tag:blogger.com,1999:blog-64727771170358081942024-02-07T21:46:44.146-05:00Pain Is A Four Letter WordThis blog began when Keith, a 38+ year survivor of CRPS (Complex Regional Pain Syndrome), underwent HBO Therapy, or Hyperbaric Oxygen Therapy, in 2008. Keith kept blog of what it was like to go through the Therapy and shared his experiences here. He then decided to keep the blog going and share what it was like to live with CRPS and chronic pain every day.
Keith is also one of the Founders and Directors of American RSDHope, www.RSDHope.org . Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.comBlogger101125tag:blogger.com,1999:blog-6472777117035808194.post-27503586474362921072015-01-20T01:21:00.000-05:002015-01-20T01:21:13.606-05:00December 30th - 2014 - The SeeSaw Life of a CRPS Patient I think I have started more of these posts of with the phrase, "I apologize for there being such a long gap between posts", or words to that affect. Once again, I must apologize.<br />
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So many things I start writing for this blog end up as articles on the website instead. Or, I start writing a blog post and then my body simply does not allow me to finish, due to the pain from the CRPS or exhaustion from the fibromyalgia, or a combination of the two.<br />
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Most of the time though it is simply because since my CRPS is full body two of the parts of my body that are severely affected are my hands. Well, hands and forearms. Typing, using the computer, gets very difficult and painful very quickly and I have to choose between answering some emails from people who write in to RSDHope, making a few adjustments to the website, and/or writing the blog the blog will lose out every time.<br />
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I know some of you out there are saying, "But Keith there are plenty of programs now that will type what you speak!". True. For the most part. But it becomes harder when you use more medical terminology and also when you use the computer more in the middle of the night when you can't sleep due to insomnia and if you type, it's quiet. If you talk out loud you wake others in the house up! Plus, there is something I like about seeing the words come alive as I type. It is sort of like preferring an actual book to the ones you can download onto your e-books or I-pad. It is what happens when you are old-er like I am ;-)<br />
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I think maybe in the future I will just close off the blog and just add stories and articles directly to the website.<br />
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THE SEE-SAW LIFE OF A CRPS PATIENT<br />
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When you are married to a CRPS patient, or partnered with one, living with one, have a child who is a patient, etc., one of the first things you learn (some better than others) is that life often gets postponed. Too often. You try to plan things out far in advance, aim for the best times of day for the CRPS patient, your loved one, but you simply cannot plan for every contingency and sometimes life just has a way of getting in the way of even the best laid plans.<br />
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If you have a loved one with CRPS the one skill you need to develop quickly is learning to adjust. Plans <i>will</i> change. Learn to adjust. Finances <i>will</i> change. Learn to adjust. Intimacy levels and habits <i>will</i> change. Learn to adjust. The sound volume in your home will need to change, the level of hecticness (is that a word?) in your home will need to change, <i>learn to adjust</i>.<br />
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You <i>will</i> become frustrated now and then, so will they, but try and become frustrated with the disease and not with each other. Learn to adjust and laugh about the dumb things in life, there sure are plenty of them. Learn to appreciate the quieter times together, appreciate the time spent with your children, if you have them.<br />
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If you have to spend a lot of time going to and from the Doctor, get some books on tape/DVD/CD and listen to them. Better yet, make them CD's of comedians and give yourselves a humor break before and after those sometimes trying events.<br />
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<b>PAIN LEVELS</b><br />
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When you <i>live</i> the life of a CRPS patient you strive to get to a point where your pain is even, balanced, on a fairly stable level from one day to the next. Zero pain is of course the ultimate goal, zero pain and zero symptoms and with the <a href="http://www.rsdhope.org/neridronate---new-medication-for-crps1.html" target="_blank"><b>new CRPS Type I medication</b></a> now coming, wow, that is actually attainable! Or at least it will be in the very near future, perhaps as early as the end of 2015.<br />
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That actually goes for all chronic pain patients. We patients seek a place where our pain is at a <i>manageable</i> level so that on a weekly basis we know that our typical morning, evening, or daytime will be, well, typical. It will be the same week-in, week-out. "Normals" may find that boring but we find that wonderful.<br />
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We work towards that place where our pain level and symptoms will average the same each day. Now that pain level may be very different for each patient and the amount of pain that we can handle after a couple of years would probably send most "normals" (normal people) to the ER screaming for painkillers! For us, it's just <i>Tuesday.</i><br />
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<b>MY PAIN LEVELS</b><br />
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For the purposes of this article I am going to share with you my typical day and week as well as how life with a CRPS patient never ends up being <i>typical</i>.<br />
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- For me the average pain level in the <i>early</i> morning is about a 9.<br />
- It comes down to an 8 by around 8 am.<br />
- I try to plan most of my activities for this time period, usually between 8 am and noon or 1 pm.<br />
- My pain level stays that way (8) until early afternoon when it closes in on 9 again. The fatigue greatly increases at that point as well, mostly from the Fibromyalgia. Not always because of an activity but simply the cycle of the CRPS and the back diseases.<br />
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- Typically I will need to lie down in the afternoon for about four hours.<i> I don't!</i> ha ha, I <i>need to</i> but I don't ;-) I can't remember the last time I slept for four hours in a row. Maybe if I was sedated. I suffer from insomnia so between the fibromyalgia and the insomnia any time I can grab an hour or so of bodily rest I try to. Even if I don't sleep my body has rested.<br />
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I know that some Doctors will tell you that the worst thing you can do if you have insomnia or sleeping problems is to take a nap during the afternoon. Let me tell you, I tried it their way for years. I tried every sleep medication under the sun. I even tried medications that are meant to keep you awake during the day just so I would be more tired at night! My way seems to work the best.<br />
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- Late in the afternoon and early evening my pain level generally heads back down towards 8.<br />
- By bedtime it has risen to about a 9 again.<br />
- With the help of my meds I am able to get some sleep, typically two hours and that drops my pain level back to an 8. (the meds are not sleep medication but rather medication I take for migraine prevention and for spasms that have the happy side effect of making me drowsy).<br />
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- After a couple of hours of sleep, usually around 11 pm or so I am awake again, the pain will wake me up. The overnight period is marked by short periods of light sleep, rest, and wakefulness. Insomnia is one of the symptoms of CRPS and not one of the fun ones.<br />
- Without the deep REM healing sleep our bodies so desperately needs it is difficult for our pain levels to drop appreciatively and the cycle continues.<br />
- My typical sleep cycle is two hours at a time, then I am up for a bit, then back down for another two hour period. I usually get anywhere from four hours a night to six hours altogether. About once a week it is about two hours a night. About once every other week it is about 7 hours. Go figure. I can't discern a reason behind the pattern so I just accept it now.<br />
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The quality of that sleep is not the greatest of course because I never attain REM sleep. You can read more about <b><a href="http://www.rsdhope.org/apps/search?q=sleep+and+pain">why that is here. </a></b><br />
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Those of you who suffer from <a href="http://www.rsdhope.org/crps-or-fibromyalgia.html" target="_blank"><b>Fibromyalgia</b> </a>as well as CRPS understand what I mean by fatigue. Those who don't, please don't think, "Oh yeah. I get tired in the afternoon too." Trust me, being tired and having <a href="http://www.webmd.com/fibromyalgia/guide/fibromyalgia-and-fatigue" target="_blank"><b>Fibro fatigue</b></a> is like comparing a Ford Fiesta with a Ford Mustang and saying, "Oh yeah, I have a Ford too." It's not the same thing even though it sounds the same.<br />
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If I have volunteered somewhere in the morning for a couple of hours then resting in the afternoon is not only probable it is an absolute necessity. Otherwise my body will simply shutdown. I am always encouraging patients to volunteer in their community. It is an excellent way for patients to;<br />
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1) Get out of the house.<br />
2) Stay mentally and emotionally involved with other people, especially if you have had to leave the workforce.<br />
3) Still be able to share the knowledge and skills you spent a lifetime learning or perhaps do something you always wanted to do but never had the time.<br />
4) Give back to your community. My parents taught me that this is something we should all always do wherever we live and whatever is going on in our lives.<br />
5) Remain physically active.<br />
6) Keep your brain sharp and work on your memory.<br />
7) Meet new people.<br />
8) When you focus more on helping others you focus less on your own problems.<br />
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I recommend that they be smart about it of course, keeping it down to just an hour or two at a time so as not to cause a problem with their CRPS or other pain issues; make sure the people they are helping know all about their limitations, medications, emergency numbers, etc. in case of an emergency; be aware of the time of day they are volunteering so as not to cause a problem with their medications; be cognizant not to overdo. I know I am very bad about this sometimes. I get lost in what I am doing and lose track of time and then the next day I pay a high price for it in terms of extra pain.<br />
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MEDICATIONS<br />
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What chronic pain patients strive for is balance, an even keel, getting to a point where their medication and exercise regimen are working well, their emotionally stable as are the people in their sphere of influence (not always an easy thing to accomplish), they are participating in outside activities and keeping their brain and other skills sharp. In other words their life is settling back into a state of equilibrium. This is a difficult thing to accomplish after such a major calamity like CRPS or some other type of chronic illness has entered your life but it can and does happen and you can do it.<br />
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What can knock you off that merry-go-round? What do we mean when we use the term "roller-coasteering" medications and how does that apply to what I have been talking about?<br />
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Once you find medications that work for you, that your Doctor has prescribed for you, <i>FOLLOW THE PRESCRIPTION DIRECTIONS</i>! If it says two a day, or one after meals, or one in the morning and two at night, <i>do that</i> <i>please</i> ;-)<br />
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If you have questions about what it says on the bottle ask your pharmacist or Doctor but <i>don't, don't, don't</i> take your medications <i>until</i> you start feeling better and then once you are feeling better STOP taking them.<br />
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Guess<i> why</i> you are feeling better? Because your meds are working <i><u>as intended!</u></i>! When you stop, your symptoms <u>start returning</u>, you start feeling worse again, maybe pain is worse or migraines, or spasms, whatever that med was helping with. So then you start taking your medications again.<br />
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Then you say, "Hey, I am feeling much better!" Guess what happens? You stop taking some of them again. And the pain and other symptoms return.<br />
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That is <b>one scenario</b>.<br />
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<b>Another scenario</b> is the patient who does not take their medication at the <i><u>same time every day</u></i> or <i><b>even every day</b></i> figuring skipping a day here and there is no big deal or taking it at 10 am one day and 2 pm another day is no big deal.<br />
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The same thing will happen as up above. Their pain and/or other symptoms will return and/or will be all over the place. When these patients go to the Dr and he/she asks them how is the medication working they inevitably will say, "It isn't helping me very much."<br />
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Taking your drugs this way is called "roller-coastering". Up one minute, down the next.<br />
That may sound dumb to some of you but to others you are thinking, "oh boy. no wonder my meds are not helping me as much as the Dr. said they should be. I do this all the time." It may surprise you but I hear both from patients all the time. If you fall into category number two, change it right away, it will make a world of difference.<br />
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MY MEDS?<br />
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My main pain medication now is the fentanyl patch. Years ago I was on Oxycontin until they switched the formulation to stop people from abusing it (breaking it down into powder form and snorting it). They did this by adding a coating to it. All that did was slow the abusers down for about an hour and a half until they figured a way around it.<br />
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Once again, a switch. Can you sense a pattern? The see-saw life of a CRPS patient. It is what we live with and what our loved ones live with. just when you start to get settled into a routine and you think you have your pain at a level you can manage something comes along to mess it up.<br />
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Each time we have to make a change to our major pain medication you have two significant swings; the first is when the initial pain medication slowly stops working and the second is when you have to find and adjust to the new medication. if you are lucky you find a good match on the first try and it is only a short time between swings. if not? Well it can be months and there is a long swing there. That means a lot of increased pain which then cascades into your other symptoms; sleep; extreme sensitivity to touch, sound, vibration, light, temperature; spasms in the muscles and blood vessels, etc.<br />
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I was lucky in that I was able to switch right to the Fentanyl patch. It took me three tries to get to the right level and that took four months but at least I finally got to the right level and it works for me. There was a brief month when my insurance made me switch to the generic version of the patch to prove it didn't work before they would pay for the name brand. For me this was kind of like switching from a strong narcotic to certs for a month. The generic form of the patch was pretty useless for me and it was a very, very painful month for me.<br />
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SEE-SAW LIFE OF CHRONIC PAIN PATIENTS<br />
or How we go back and forth<br />
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I apologize for making this so long but I want to include a few details so you can see some of what it is like for a typical patient. I won't include anything to do with my other diseases and other medical issues so I can try and keep rings focused on the CRPS, but it still will be long. It will be worth it though so hang in there ;-)<br />
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Two summers ago in our little town we caught a glimpse of what life may have been like for Noah. It rained for many, many days and nights. A few of us started drawing up plans for an ark and I think if we could have figured out what a cubit was we may have actually have built the thing. We were going to include a man-cave in this version though and there was talk of excluding roaches and mosquitos this time around.<br />
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Near the end of the rainy season, while checking on the last of our items not flooded in our leaky basement I fell down the entire flight of stairs in our basement. It had been leaking/flooding worse and worse with every rainstorm. When I arrived at my destination, the bottom, I was terrified. Not so much at the pain, which I was sure was coming as soon as my brain registered it, but by the thought that I had re-injured the lower spine that I had originally broken in 1985 in a severe auto accident.<br />
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Back in 1985 I ended up with lamenectomy and spinal fusion on L5 and S1. I spent nearly two years in physical therapy and originally they gave me a 25% chance of success for that surgery, which occurred in 1987, following rotator cuff surgery (also from the accident). Took quite a few months to recover from and I had to learn how to walk again afterwards. That back injury and/or surgery is also what caused my CRPS to spread full body.<br />
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Somehow that flight down the stairs took a very long time and as I went down I kept thinking, "This time I may not recover, this time they may not be able to fix it, Lord help me, Lord don't let it be broken, I cannot go through that again." I don't ever remember being so scared.<br />
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It turned out to be a piriformis muscle injury. By the time I got to the ER one side of my buttocks had swollen to the size of a small cantaloupe, in the time of about ten minutes, and it kept getting larger. They said they had never seen a reaction that quick before (again, notice a pattern?) I looked like a malformed Khardasian sister.<br />
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That injury happened the end of July. I could barely walk the entire month of August and then with the help of Physical therapy and lots of pushing on my part and the help of my better half, I got back to walking but here it is 18 months later and I am still in pain from it and still suffering because of it. That injury has caused us to cancel plans, adjust many activities, cancel volunteer activities we planned on doing together, cancel months of "couples" activities, and many other things. Any time a patient suffers additional pain so does the loved one, as you all know.<br />
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Before that injury, I had my pain level at a manageable level. See-saw.<br />
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I will step things up here as you can see the pattern.<br />
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Winter comes. We had moved to a milder climate because in the colder state I lived in, every time winter came all of the progress I had made was lost once the cold weather settled in. Moved to Florida. But the very hot weather, which is almost all the time down there now, made outside activities almost impossible most of the year for me and my partner. She was very affected by the extreme heat and the hot summer month really bothered me.<br />
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Found a nice medium, right smack in the middle. Very mild winters, nine months of the year we have fantastic weather and we can walk eleven months of the year outside. Wonderful.<br />
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Still, the cold weather does affect me and my pain just not as much. Mild see-saw ;-) Maybe, teeter-totter!<br />
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Come February we had to travel via plane to a conference in another state. I don't normally like to travel because of the pressure changes that come with the altitude but we needed to attend since <b><a href="http://www.rsdhope.org/" target="_blank">American RSDHope</a></b> was co-sponsoring the event with the <b>RSDSA</b>. When I returned home it took me a week to recover. The trip and the plane ride caused my pain to spike.<br />
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See-saw.<br />
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Due to my back issues ( degenerative disc disease, bad discs in lower back and very bad discs in my neck) about once every nine months I need a lumbar nerve block to help me keep walking. These are the exact <a href="http://www.rsdhope.org/nerve-blocks-for-crps.html">same kind of Nerve Blocks</a> that are given to newly diagnosed CRPS patients. Usually I don't have any problems with them. I have been getting nerve blocks for the past 20+ years. I have gotten nerve blocks in my back, my neck, even the back of my head (to try and stop migraines, now THOSE hurt). I have even gotten needles injected directly into my eye before. Ooh yeah, fun times. That was before my corneal transplant.<br />
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The only time I ever had a problem with a nerve block was back in 1992. I received a lumbar block and apparently they went into the spinal canal and I was temporarily paralyzed from the neck down for about 24 hours but I was still able to breathe on my own. I couldn't move my arms or my legs. I could talk, could not really move my neck, couldn't feel any of that stuff. I was out of pain at least!<br />
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They made my wife take me home 23.5 hours after the block because my insurance wouldn't admit me for the procedure I had. I had started to get some feeling back in my legs at that point but I couldn't walk and could not use my arms. My poor wife, she was all of about 5 feet tall and had to carry all 6' 200 pounds of me, dead weight, up two flights of stairs. I still don't know how she did it but the neighbors forever after that called me a drunkard. They thought I had passed out drunk somewhere and she had to go get me and carry me home. May sound funny now but it was very hurtful at the time, for both of us.<br />
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Anyway, <i>this</i> time that I received the block, in 2013, I had a weird reaction but not totally unheard of. I had never experienced it and they had not seen it before but I had heard of other patients experiencing it. I share it with you now, like these other experiences, so if it ever happens to you you will know you aren't crazy or nuts or bizarre just a CRPS patient! <br />
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What happened was within an hour of the block, I was home by then, my entire upper body turned bright red. They had to put the IV in my hand because even though my veins look <i>mah-velous </i>they disappear as soon as they try to put a needle within a foot of them. No pun intended. The only place they can put an IV most times is my hand. They did a great job doing it, despite what the IV site looks like in the pictures. There were no problems putting it in. I always follow the protocol we set up when it comes to <b><a href="http://www.rsdhope.org/crps-the-er-hospitals-and-surgery.html">Needles and CRPS.</a></b><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3PU3KMxaNMQHPL-esU7haE5mRLDL8Wx_5kXgOyWLjC-WTc2U8dGGdpV-SDKPoyy3Acx3LXO89tYQuXP1pHjh0ru8u9GluJBMPE5XsPD0YixCtkUpoJNfM7AehlfENHq_yo7CZ6irncKs/s1600/Image.jpg" height="200" style="margin-left: auto; margin-right: auto;" width="150" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is my left hand where they had the IV</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVyI9YMvJj5Dq-BYN6BEUewMChleJms1jnsV7RogT5yPnslxFqN0MNs-CqgcgSm83ZssDE0qtfY2LkNqKt3NPrz0fv8GKcghtWvamBPWtW1yj7fJsU-wWAXZuAv4Sz7QDxOFY6_gNUpMk/s1600/Image+4.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVyI9YMvJj5Dq-BYN6BEUewMChleJms1jnsV7RogT5yPnslxFqN0MNs-CqgcgSm83ZssDE0qtfY2LkNqKt3NPrz0fv8GKcghtWvamBPWtW1yj7fJsU-wWAXZuAv4Sz7QDxOFY6_gNUpMk/s1600/Image+4.jpg" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">RT hand, five days post block</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9vjTGcqioZfITRXxNBbaDeUhf-p_s7T95uuYaY57Vsup44nVYYLKvbtHiOwW4EbD6id5h19GFZi5l5MzJ7ZNQC1MpB1esIDSmqL2G5jHYfd6pblrUpjkhyphenhyphenCxPXwwi64fVcQLTMdGlFOU/s1600/IMG_1848.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9vjTGcqioZfITRXxNBbaDeUhf-p_s7T95uuYaY57Vsup44nVYYLKvbtHiOwW4EbD6id5h19GFZi5l5MzJ7ZNQC1MpB1esIDSmqL2G5jHYfd6pblrUpjkhyphenhyphenCxPXwwi64fVcQLTMdGlFOU/s1600/IMG_1848.jpg" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">chest, six days post block, red disappearing<br /><br /><br /><br /><br /></td></tr>
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As you can see in the pictures, I was still bright red many days following the procedure. My block was on a Friday, I went back to the clinic on a Monday because they couldn't believe it when I told them I looked like a boiled lobster! There really wasn't anything they could do and it wasn't causing me any pain fortunately, just this weird color reaction. It finally disappeared about one week later.<br />
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See-saw<br />
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It is a bizarre disease like no other and having said that, never ever compare medication dosages with other patients in the hope that if it worked for them it will probably work for you!<br />
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Chronic pain medications, like opiods, can work differently<br />
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Just two quick notes while we are talking about opiods and chronic pain medications. The first is that you might read information about chronic pain patients becoming addicted to their medications. Unfortunately the Doctors and "non-Doctors" out there who have pushed this idea that everyone who has chronic pain becomes addicted to pain medications has been very successful in getting this idea out there. it isn't backed up by the facts I have seen though. Here are some articles you should read about it; <a href="http://www.rsdhope.org/drug-therapies-for-crps.html">CHRONIC PAIN PATIENTS AND ADDICTION - ONE </a>and <a href="http://www.rsdhope.org/addiction-dependence-or-tolerance-to-opiods.html">CHRONIC PAIN PATIENTS AND ADDICTION TWO . </a><br />
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I know this was a very very long post but that will also help to explain why it took me months to write it. I had to stop and start it so many times. I think I have five other articles in various states of "finishing" as this one was. I hope this helps some of you.<br />
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Peace, <a href="mailto:RSDHope@mac.com">Keith Orsini</a><br />
Full-body CRPS survivor for 41 years<br />
<a href="http://www.rsdhope.org/">American RSDHope</a><br />
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<br />Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-66529688315806717052014-07-07T00:52:00.002-04:002014-07-07T00:52:15.030-04:00CRPS DonationsWould you like to make a donation for CRPS research? To help change the life of a newly diagnosed CRPS patient, or help further the understanding of the disease among the medical community? To enable American RSDHope to continue its mission of spreading awareness of the most sinful form of chronic pain that exists today?<br />
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We in the CRPS community have made great strides in recent years, more people know about and understand the disease than at any time in the history of our disease but we still have miles to go before we sleep. We still have so much to do, so many patients suffer every day, spend years without a diagnosis, get incorrect treatment resulting in a spreading of the disease and unnecessary agony.<br />
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We don't have a cure yet but we do have some treatments that can reduce the pain and make the life of a CRPS patient more enjoyable and mainstream. Patients and their loved ones need to know that people care about them and their lives, their futures.<br />
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Help us in our mission and donate today. Every dollar counts. Thank you to everyone who has supported American RSDHope over the last 19+ years and enabled us to help and save so many patients, so many friends. Thank you to everyone who donated their time as well for fundraisers, running support groups, volunteering as mentors, making phone calls and sending emails, and a host of other tasks. Without all of you we could not do what we have done these last two decades.<br />
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Mahatma Gandhi once said, "The best way to find yourself is to lose yourself in the service of others."<br />
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<a href="http://www.rsdhope.org/crps-donations-to-american-rsdhope.html" target="_blank">CLICK HERE TO DONATE TO CRPS</a><br />
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Peace,<br />
<br />
Keith Orsini<br />
<br />
American RSDHope<br />
<a href="http://www.rsdhope.org/">www.rsdhope.org</a><br />
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<br />Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-23902965874501412032014-07-07T00:30:00.002-04:002014-07-07T00:30:47.702-04:00American RSDHope announces two new ways to shop, save, and donate to CRPS! <span style="background-color: rgba(255, 255, 255, 0);">Hi Everyone - We have another location in which you can donate to American RSDHope. And, as said in the message below, these donations give us the ability to fund research to help search for a cure and new treatments . </span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">Check out the Cover Page for AMERICAN RSDHOPE to see the links for FIRST GIVING and Amazon's new SMILE shopping program! </span><br />
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<span style="background-color: rgba(255, 255, 255, 0);"><a href="http://www.rsdhope.org/" target="_blank">Here is the link</a>!</span><br />
<br />Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-51982737130926483022014-07-07T00:23:00.001-04:002014-07-07T00:23:22.786-04:00UK lawyer wins huge payout for CRPS patient!<h2 class="wsite-content-title" style="margin: 0px; padding: 0.3em 0px;">
<span style="font-size: small;"><span style="background-color: rgba(255, 255, 255, 0);">UK Lawyer Wins Huge Verdict For CRPS Patient </span></span></h2>
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<span style="background-color: rgba(255, 255, 255, 0);">Brian Barr has won a settlement of over £905,000 ( $1.5 Million in U.S. funds) for 44 year old Neil Swift, who developed Complex Regional Pain Syndrome (CRPS) after an accident.<br /><br />Neil Swift was an HGV driver for a Civil Engineering Company. On 25 July 2010 he returned to the Company yard, only to find a JCB blocking the entrance. His Manager asked him to move the JCB so he could put his HGV in the yard. The JCB had been vandalised and its windows smashed. Neil climbed up the steps on the driver’s side of the cab but was unable to unlock the damaged door from the outside. He attempted to reach inside through the broken window to unlock the door but, as he did so, he slipped and cut his left arm badly on protruding pieces of broken glass.<br /><br />In the incident Neil damaged his radial artery, median nerve and flexor tendons. He developed CRPS for which he underwent a median nerve block, Guanethidine blocks, physiotherapy, Pain Management, a Sympathectomy and a nerve graft.<br /><br />Sadly, Neil has been left with a virtually functionless left arm and hand. He is right handed. He has not been able to work since the accident.</span></div>
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Check out the complete article on<a href="http://www.rsdhope.org/uk-lawyer-wins-huge-settlement-for-crps-patient.html" target="_blank"> our website here</a>Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-81117968919272891572014-07-07T00:18:00.001-04:002014-07-07T00:18:25.002-04:00Donating to websites online or buying items online<span style="background-color: rgba(255, 255, 255, 0);">Unfortunately, some of us have been victims of someone soliciting funds for a cause. We want to remind you before you buy something from, or donate to someone stating they are giving some of those funds to a specific charity, a 501(3)(c), such as American RSDHope, RSDSA, etc., that you confirm with the organization receiving funds that it's true. Or that there is a legitimate connection between the "donator" and "donatee." Call the organization, email them, and make sure BEFORE you buy or donate that there is indeed a legitimate connection there. </span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">We don't like to think that someone would want to cash in on a disease, but we have all seen it in the news. Just be informed. </span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">If you want to be sure that someone is raising funds for American Rsdhope you <a href="mailto:RSDHope@mac.com" target="_blank">can email us</a> or you can call us at (207) 583-4589. You can also visit our <a href="http://www.rsdhope.org/contact-us.html" target="_blank">CONTACT US</a> page on our website. </span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">I am sure you can contact the RSDSA via their website , www.rsds.org , if the person raising the money says they are doing so on their behalf.</span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">Thank you everyone! </span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">Peace,</span><br />
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Keith Orsini<br />
American RSDHope<br />
www.rsdhope.orgKeithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-17618097684431839212014-07-07T00:09:00.001-04:002014-07-07T00:09:09.253-04:00Simulating a block by having your foot fall asleep -email questionsI have never heard of doing that and I am not sure how that would work.<br />
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Sorry it took so long to respond, we have had an inordinate number of patient emails sent to our our website.<br />
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In the future, if anyone has any questions for me or anyone at American RSDHope they will get answered much more quickly if you email us directly at RSDHope@mac.com<br />
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We get about 150 emails per day between us and typically patients get a response within a few days, we try our hardest. We also make sure not to get behind so we respond as quickly as we can . They can really pile up if you don't!<br />
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Thank you to everyone who writes in to tell us how much they have enjoyed our website, how much it has helped them. We greatly enjoy hearing the feedback and knowing that what we are doing works. Our website is approaching 17 million visitors this year, 2014, and next year will mark twenty years that American RSDHope has had their doors open. It hasn't always been easy, physically or financially, but with all of you helping us we have made it.<br />
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Have a wonderful week!<br />
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Peace, Keith Orsini<br />
American RSDHope<br />
www.rsdhope.orgKeithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-68458857784767452252014-03-16T16:59:00.002-04:002014-03-21T00:17:28.845-04:00RSD or CRPS? I still want to call it Reflex Sympathetic Dystrophy! I want to continue calling our disease RSD or Reflex Sympathetic Dystrophy, not CRPS or Complex Regional Pain Syndrome. Do I have to make the change????<br />
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I thought I would post this short answer here because we are still getting this question here at American RSDHope and not only from patients but also from family members, some medical professionals, and even from some patients who run support groups.<br />
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Some people are still clinging to the old designation "RSD" with the last few ounces of strength in their body and refuse to make the change. Well, guess what? You just don't have a choice.<br />
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<i>But I don't wannu</i></h3>
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It's kind of like when you work with children in the school system and it is time to read. They will invariably tell you, "But I don't want to read."<br />
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"Well guess what? You don't have a choice here. kiddo ;-)"<br />
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Actually we try to explain to them how important it is to read, how much it will help them in 2nd., 3rd. and 4th. grade, etc. but you get the idea. We try very hard to never say what your parents did growing up, you all know what I am referring to.<br />
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But just because you don't <i>want </i>to do something, doesn't mean that is the way it's going to be.<br />
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Unfortunately we can't throw the "Because I said so!" at everyone in the CRPS Community who asks "WHY do I have to call it CRPS?". It just won't work.<br />
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The same holds true for deciding what to call our disease.<br />
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<span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;"><i><span style="font-family: arial, helvetica;">But </span>It’s what I am used to and I prefer that name to CRPS! </i></span></h3>
<span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;"><br /></span><span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;"><span style="font-family: arial, helvetica;">I can understand wanting to stick to the old name. We all got used to saying “RSD”, we started to get some traction with the public with that name, it also sounded a lot better than CRPS sounds. That sounds like, “Hey I have craps!” Who wants to say they have craps? Yuck! </span></span><br />
<span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;"><span style="font-family: arial, helvetica;"><br /></span></span><span style="font-family: arial, helvetica;">But because any of us, you, me, anyone who deals with CRPS patients, must help them, we must use the correct and current terminology. </span><br />
<span style="font-family: arial, helvetica;"><br /></span><span style="font-family: arial, helvetica;">The current and correct terminology says the name of the disease is <a href="http://www.rsdhope.org/crps-or-rsds.html" target="_blank">COMPLEX REGIONAL PAIN SYNDROME, TYPES I AND II</a>, so that is what we must call it. Period. End of story. We don’t get to pick and choose which parts of this disease we want to follow and which we want to ignore. If that were the case I don't think there would be ANY patients who would check off the box <i>"most severe form of chronic pain know to man"</i>.</span><br />
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<span style="font-family: arial, helvetica;"><i>Two Distinct Types </i></span></h3>
<span style="font-family: arial, helvetica;"><br /></span><span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;">In fact though it is two <i><b>very</b></i> distinct types, Types I and II. CRPS Type I, <i><b>formerly RSDS,</b></i> and Type II, <b><i>formerly Causalgia</i></b>. They have very different and distinct etiologies, are diagnosed differently, and need to be treated very differently and obviously have very different outcomes. There are some methods of treatment that will never work on Type II for instance that will many times work for Type I , because of the severe nerve damage that Type II involves. </span><br />
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<span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;">For more information on the difference between the two types of CRPS please visit our website by clicking on <b><a href="http://www.rsdhope.org/what-is-crps.html" target="_blank">American RSDHope</a> </b>or visit our<a href="http://www.rsdhope.org/" target="_blank"> <b>main page HERE</b></a><b> </b>, click on the link above.</span><br />
<span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;"><br /></span><span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;"><span style="font-family: arial, helvetica;">For these, and other reasons, the name change was made back in 1985. It did take longer for some parts of the medical community to make the switch, especially the Physical Therapy community, but the switch was vital in order to better diagnose, treat, and care for CRPS patients. So while it may seem like the same old illness the name change was necessary and the distinction was much needed, and not only has the medical community made the change but so has SSD, WC, and all of the coding. </span></span><br />
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<span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;"><span style="font-family: arial, helvetica;">There are still some out there in the medical community who have not made the change and it is one way to determine who is current in their medical reading, research, and treatment and thinking of our disease. Help us help them get current. Refer them to <b><a href="http://www.rsdhope.org/" target="_blank">American RSDHope's website</a></b> or the <b><a href="http://www.rsds.org/" target="_blank">RSDSA's website</a></b> so they can learn what you now know.</span></span><br />
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<i><span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;"><span style="font-family: arial, helvetica;">New Medication Coming specifically for </span></span><span style="font-family: arial, helvetica;">CRPS Type I soon!</span></i></h3>
<span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;"><span style="font-family: arial, helvetica;"><br /></span></span><span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;"><span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px; font-family: Arial;"><span style="font-family: arial, helvetica;"><span style="font-family: ArialMT;">Now we even have a brand new medication coming out that has been developed for </span>CRPS</span><span style="font-family: ArialMT;">,</span><span style="font-family: arial, helvetica;"> neridronate, that has a 100% success rate of placing <b>CRPS Type I</b> patients into remission. It does not work on Type II patients. If you research “<b>new RSD medication</b></span></span><span style="font-family: arial, helvetica;">” you may not find it but it will pop up in <i><b>many</b></i> different locations with a search of <b><i>“new CRPS medication"</i></b>. Imagine missing this news because you stuck to your guns and only dealt with this disease on an RSD basis? Or if you wanted to make sure you got the latest news on your disease but only searched for "RSD Information" instead of "CRPS information"?</span></span><br />
<span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;"><span style="font-family: arial, helvetica;"><br /></span></span><span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;"><span style="font-family: arial, helvetica;">We all fought it in the beginning. We ALL did, myself included. But that battle ended many years ago and we lost. The name change was a done deal, we need to move on. </span></span><br />
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<span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;"><span style="font-family: arial, helvetica;">Please understand it isn’t simply me being obstinate or ornery. It is a necessary thing we must deal with every day and anyone who deals with, instruct, assists patients must make the switch in their heads for the reasons stated above. </span></span><br />
<span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;"><span style="font-family: arial, helvetica;"><br /></span></span>
<span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px;"><span style="font-family: arial, helvetica;">Only a few weeks ago Jim Broatch (of the <a href="http://www.rsds.org/" target="_blank">RSDSA</a>) and I had this very discussion with some of the leaders of other medical organizations from around the country at a meeting that our two organizations co-hosted in Philadelphia, so you aren</span></span><span style="font-family: arial, helvetica;">’t alone if you still want to hold on to the old “RSD” designation, but you need to jump on the CRPS train quickly. It has left the station and will soon be rounding the bend and out of sight! </span><br />
<span style="font-family: arial, helvetica;"><br /></span><span style="font-family: arial, helvetica;">I hope that clears things up?</span><br />
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<span style="font-family: arial, helvetica;"><a href="mailto:RSDHope@mac.com" target="_blank">Keith,</a></span><br />
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<span style="font-family: arial, helvetica;"><a href="http://www.rsdhope.org/" target="_blank">American RSDHope</a></span><br />
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<tr><td class="tr-caption" style="text-align: center;">Nat'l CRPS Awareness</td></tr>
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Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-12712081343861543982013-11-05T01:45:00.006-05:002013-11-05T01:48:46.367-05:00Fentanyl Patch - does the generic patch work as well for chronic pain as the name brand?ARGGGGGGGGGGGH, OWWWWWWWWWWWWW<br />
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GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR<br />
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GROWLLLLLLLLLLLLLLLLLL<br />
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OK , Now that was how most of my days last month went when my insurance company made me go on the generic form of the Fentanyl patch for the month to prove that the name brand that I had been using was worth the extra $35 a month. Yeah that's right. $35 a month so I could spend a month in agony.<br />
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I know. Some of the Drs out there, and maybe some pharmaceutical reps, will say "There is no difference between the name brand medications and the generic formulations."<br />
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wonderful.<br />
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YOU try living in chronic pain and having your main source of relief switched to a generic brand and see if you agree. Maybe for some people there <i>is</i> no difference. And I will admit that for some drugs and for some diseases and issues there is no or is little difference between the name brand and the generic medications HOWEVER, for about 40% of them there absolutely is!<br />
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40%? Where did you get that??? personal experience and patient submissions, no studies or articles so don't quote me. Share your own experiences if you like here and I will post them.<br />
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I will say that FOR ME, the generic patch at 75 mcg was about the same as about a 25 mcg patch for the first two days and it felt like a band-aid for the third day. It was hell. The first week was bearable, the second and third weeks were extremely difficult and the last week was very very rough but at least I knew relief was coming.<br />
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Now I have been back on the real patches for 5 days and it is beginning to get better but here is what those guys don't understand. There is a c u r v e involved. Like a learning curve for people learning a new skill or children learning to read, with medications, when you go off a pain med, it takes a while to get back up to speed, it isn't like a light switch that suddenly is turned on and bang! All your pain is gone again because you are on the better medication or the right dosage.<br />
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When you get taken off of the correct dose or the medication that is working well for you, for whatever reason, your pain levels go up , you can go into pain spikes or flares, and that nice even keel of pain management you were on takes a while to get back. It doesn't matter if you were holding onto a pain level of 5 or 9 every day, if it was the SAME every day it was easier to manage than if it was an 8 one day , a 7 the next, a 9 the next, a 6 the day after and so on. You adjust your mental picture and your daily routine to your pain level, you plan your future routine and activities to your pain level, etc.<br />
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Not to mention when you have weeks-long pain increases, due to being taken off of your regular pain medication because the insurance companies want you to go through their hoop-dee-hoops to prove what you and your Doctor already know, your normal physical therapy regimen gets tossed all out of whack.<br />
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For me and my better half that means walking most days of the week. People always say to us "Didn't I see you guys walking ……?" Yes probably. We are always walking because if we don't it increases both of our medical issues. it isn't easy to get ourselves out there many days, much easier to stay inside and sit on our tushies but not in the long run. Use it or lose it very much applies to CRPS and other chronic pain diseases, MS, etc. Plus, after being in a wheelchair for a few years I never want to go back there so I walk whenever I can even when it hurts a lot, and it does. And last month boy did it ever hurt. But I have to admit I missed more days than I wanted to and simply could not walk as fast as I was used to, because of those dern patches.<br />
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And I was already messed up due to the fall down the flight of stairs I had taken at the end of July. I lost an entire month there when I simply could not walk further than around my house except maybe once a day down the block with my cane, again. I was able to lose that cane after a month or so but the extra pain of that fall will be with me for many months yet.<br />
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I am not complaining, although it may seem that way. I am far better off than so many of the people who write in to us at American RSDHope. I feel blessed when I read some of their stories and I try to sound encouraging to them.<br />
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We try to share with them the positive stories of volunteering and working with the kids, how much that helps us. People ask us how can we do that, being in pain? My answer is simple. We hear from parents of little kids and teens who suffer from this horrific disease called Complex Regional Pain Syndrome every day. They tell us how much their children suffer, how they can't go to school, play like "normal" children, how they as parents feel so helpless and ask us what they can possibly do to raise awareness and understanding? What can they do to help their children?<br />
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We help them. We call them, we email them. My Anjanette, my mom Lynne, myself. Every day or most days. As our bodies allow. Some days we can do more than others. We have other people we can call on to help us, other volunteers, other family members, friends. But the answers are still all very difficult because this disease, as all of you out there suffering with it know, is extremely difficult. It is the most painful form of chronic pain that exists and has been since it was first discovered and studied during the Civil War.<br />
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So why do we volunteer with kids? To remind ourselves that not all the kids out there are in pain. To hear their laughter, to be surrounded by their joy and be replenished by it. To remember that for most kids the biggest problems they face is when Joey poked them during small groups, or Suzie took their favorite book during reading time and wouldn't share, or that David has a tough time pronouncing words that start with the letter L. It's our breather. It is the same reason we love going to church, to have our faith renewed, be surrounded by friends and family, by all that love and warmth, and to be reminded that no matter how big our problems seem at the moment, God is always beside us. For me, faith guides me , renews me, and has been there to keep me going these 39 years through this disease.<br />
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I am sharing this story because it aggravates me that we still have to jump through these hoops, to dance this "even though your pain medication is working beautifully for you we need you to try this less powerful medication that will result in your being in more pain but it will only be for a month, then you can go back to being in your regular amount of chronic pain" substitution dance, just because that's the way it's always done.<br />
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There has to be a better way to do it. I don't know anyone who works in this part of the insurance company who might be in a position to change things. Perhaps you do, maybe it is even you yourself?<br />
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Just sharing my experience.<br />
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Peace and freedom from pain, it is all we seek<br />
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And this month? HAPPY <a href="http://www.rsdhope.org/november-2013-national-crps-awareness-month.html" target="_blank">NATIONAL CRPS AWARENESS MONTH </a>ONCE AGAIN!!<br />
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Keith Orsini, CRPS Survivor (and fibromyalgia, and failed back syndrome , and<br />
well, we'll stop there;-)<br />
<a href="http://www.rsdhope.org/" target="_blank">American RSDHope</a><br />
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<br />Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com1tag:blogger.com,1999:blog-6472777117035808194.post-20273062625948296632013-11-05T01:05:00.000-05:002013-11-05T01:05:19.878-05:00Official CRPS RSD Awareness Ribbon Color This is a post of an article from the American RSDHoe website. It discusses the official color of the national RSD or CRPS Awareness ribbon, why it is a multi-colored ribbon, (or flame -colored ribbon) and not a generic orange ribbon, or red ribbon, or purple, etc. Since the article was posted on the RSDHope website it has been viewed hundreds of times already in just ten days and the requests for the ribbon have gone way up. This is great news for Awareness, especially during November, which is National CRPS Awareness Month!<br />
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Official CRPS Or RSD Awareness Ribbon </h2>
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<span style="line-height: 1.3;">How Did The CRPS Community Decide On The Color Combination ?</span></h2>
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<span style="line-height: 1.3;">By Keith Orsini, Director and long-term CRPS Survivor</span></div>
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<span style="line-height: 1.5;">Is the CRPS Awareness Ribbon <span style="color: #a82e2e;">Red,</span> <span style="color: #dab844;"><strong>Yellow,</strong></span> <span style="color: #a85f2e;"><strong>Orange</strong></span>, <span style="color: #ae40a5;"><strong>Purple?</strong></span> Or is it the <strong><a href="http://www.rsdhope.org/national-crps-awareness-ribbon.html" style="color: #990000; text-decoration: none;" target="_blank">Multi-colored Flame ribbon</a></strong> displayed on the American RSDHope website? How was the choice made? How can individual patients help spread CRPS Awareness? These are questions we sometimes get asked at <a href="http://www.rsdhope.org/" style="color: #990000; text-decoration: none;" target="_blank"><strong>American RSDHope.</strong></a> </span><br /><br />Let me clear up the confusion and explain how it all came to pass that the RSD and CRPS Community acquired its' very own Awareness ribbon many, many years ago, almost 15 years now!<br /><br />A time long, long ago. In a galaxy close to home ….<br /><br />No, seriously.<br /><br /><span style="color: #2a2a2a;"><strong>There</strong><em style="font-weight: bold; position: relative;"> is </em><strong>an official CRPS and RSD Awareness Ribbon. YEAH! WHOOPEE! </strong>There has been for a long time but don't feel badly if you didn't know. You would be shocked if you learned how many physicians in this country still have no idea what our disease is all about <em style="position: relative;"><u>and that's their job </u>;-)</em></span><br /><br />You can see it by <a href="http://www.rsdhope.org/national-crps-awareness-ribbon.html" style="color: #990000; text-decoration: none;" target="_blank"><strong>CLICKING HERE</strong></a>. It is also displayed on the cover page of the American RSDHope website and thousands of other webpages, Face Book pages, as well as everything from professional race cars and speedboats to horse blankets and awareness brochures. Patients and their loved ones have had it tattooed on their bodies, and wear it proudly on their shirts, sweatshirts, cars and trucks. <br /><br />How did the multi-colored flame ribbon come to be? It is an amazing story of cooperation really. Approximately fifteen years ago the CRPS and RSD groups across the country, including American RSDHope, held a many-months long discussion and voting process to decide what color we should have as our official national CRPS Awareness ribbon. These groups included groups that met in person as well as those that met in on-line chat-rooms and listservs. It was not an easy process as you can imagine. We were communicating with so many different people, some via the internet and some not. We had patients from all over the country talking in chat rooms, discussing it in their monthly support groups, and many patients simply wrote to us directly, sharing their feelings.<br /><br />Many colors were suggested in the early stages of course; everything from red to yellow, purple to orange, yellow to blue. It was obvious that we had to first make a list of what the many different color ribbons stood for and go from there.<br /><br />When we did, we learned that many colors had a <strong>VERY LARGE</strong> number of diseases or causes already associated with them; such as orange, red, and purple.<br /><br /><em style="font-weight: bold; position: relative;"><span style="color: #a85f2e;">Orange </span>ribbons: </em>This is<em style="position: relative;"> </em>the color Awareness Ribbon for not only MS (Multiple Sclerosis), but also Leukemia, Muscular Dystrophy, Malnutrition, ADHD, and several types of Cancer among other things. Those are pretty big causes with lots of years of awareness behind them.<br /><br /><strong><em style="position: relative;"><span style="color: #c23b3b;">Red </span>ribbons:</em></strong> AIDS awareness and Heart disease.<br /><br /><strong><em style="position: relative;"><span style="color: #b748ae;">Purple</span> ribbons:</em></strong> Suicide Prevention, Lupus, Crohn’s Disease, Testicular Cancer, Animal Cruelty, Drug Overdose, Fibromyalgia, and many others.<br /><br />There may be others out there that someone has suggested for CRPS or RSD Awareness but you get the idea. The other colors suggested were simply more of the same, that is, already being used by other causes. <br /><br />We decided to take a different tack entirely. We asked everyone what they wanted the Awareness Ribbon to say, what symptoms they wanted the ribbon to represent, or what aspect of the disease, or what message did they want it to convey? What did we want people to<em style="position: relative;"> look at the ribbon and see</em>? Think about some of the ribbons out there now and think about what pops into your mind. For most people when they see an orange ribbon they think Multiple Sclerosis. When they see a pink ribbon they think Breast Cancer. When they see a red ribbon they think Aids Awareness. There are some causes that are extremely tied to their ribbons and that can be extremely beneficial when it comes to fundraising, events, publicity, etc.<br /><br />We learned that most people wanted it to somehow stand for the color of the burning pain, to remind people of the FLAME, the burning we feel everyday. That tied in to the colors that people sent in but it was obvious we needed to look elsewhere since using one of the colors stated above would simply make us one of the many diseases lost in the colors. Many others wanted people to look at it and immediately think of CRPS, think of our name, our disease.<br /><br />In the end we decided to design one of our own and when we did, the <strong><a href="http://www.rsdhope.org/national-crps-awareness-ribbon.html" style="color: #990000; text-decoration: none;" title="">multi-colored Flame Ribbon you see here</a></strong> was born. We shared it with all of the groups, voted on it, and it was overwhelmingly YES in favor of adopting it as the Official National CRPS and RSD Awareness Ribbon. </div>
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<span style="line-height: 1.5;">That was more than a decade ago, almost fifteen years ago, and awareness has been growing by leaps and bounds and though we still have a long way to go, with every patient we grow a little bit more. With your help, we can keep that trend going!</span></div>
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Ever since we started, the jpeg of the ribbon has been made available to any individual or support group at no cost; to use on their websites, Face book page, e-mails, for fundraisers, for awareness specialties such as race Cars, racehorses, racing boats, tattoos, t-shirts, sweatshirts, you name it. Many have used it to raise research funds and many, many more<br /><br />I am not really sure how it started but apparently a few years back the color Orange started appearing on the internet as an option for RSD Awareness. That was one reason we thought make it clear that yes, there already was an official CRPS Awareness ribbon. <i>One that no other organization or disease has or can ever have! </i></div>
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This is very important to creating awareness. The public sees our ribbon and they know instantly it is for CRPS and RSD Awareness, not one of many diseases, as happens with one of the other color ribbons that many diseases use. No one else can ever have the flame ribbon ;-)<br /><br />Help us to keep spreading CRPS Awareness by educating the public about the disease and by using the official ribbon.<br /><br />Listen, we have all worked very hard in the CRPS Community trying to raise Awareness of this diseases. We have all shared stories if our disease with friends and family trying to help more people realize how horrific this disease can be if not caught and reversed early enough. Some of the luckier ones have been able to get their stories told in their local paper, local news broadcast, national news, syndicated talk show, Twenty-Twenty, 60 Minutes, and more. Hundreds of thousands of CRPS brochures have been distributed from the two national CRPS organizations to all points of the compass, explaining in detail what this disease is all about.<br /><br />There are groups across the country that hold seminars and conferences for patients, their loved ones, and medical professionals. Many of us have marched on and in Washington, DC and in our own local statehouses getting bills passed for National Awareness Day (November 5th) and National Awareness Month (November); or getting SSDisability to accept CRPS as a disabling disease; or to provide an exemption for CRPS patients on Medicare so that they can get as much physical therapy as needed. The two national CRPS Organizations have held countless conferences over the years and workshops for research and continue to do so.<br /><br />Awareness is something that requires constant CONCERTED and COORDINATED effort. That is why we have pushed so hard to get the official ribbon out to as many places as possible, as quickly as possible. It doesn’t matter if it is a bake sale at your local Walmart or an Awareness Talk at your daughter's school. If you inform one more person, you have been successful. <br /><br />This November, make it a point to begin <strong><em style="position: relative;">your</em></strong> fight for CRPS Awareness. <strong><em style="position: relative;">Make every day</em> </strong>CRPS Awareness Day. <strong><em style="position: relative;">Every month</em></strong> CRPS Awareness Month! Get the <strong><a href="http://www.rsdhope.org/national-crps-awareness-ribbon.html" style="color: #990000; text-decoration: none;" title="">official CRPS Awareness Ribbon</a></strong> for yourself, your webpages, Face Book, your emails, your families" pages and email. Get it for your friends and ask them to post it on <strong><em style="position: relative;">their Face Book page! </em></strong>Get some CRPS Brochures and pass them around to your local physician's offices, hospitals (especially the ER departments), physical therapists, podiatrists, etc. Wear your CRPS Ribbon pin so people can ask you “What does <strong><em style="position: relative;">that</em></strong> stand for?” Get one for your car, truck, RV, work vehicle, snowmobile, whatever, and spread the word!<br /><br />As my friend Heather says, "Let's make <em style="position: relative;">every month</em> National Awareness Month!" <span style="line-height: 1.5;">Then maybe, five or ten years from now, the CRPS Ribbon will be so well known that everyone will recognize it immediately. </span><br /><br /><span style="line-height: 1.5;">What can you do, ONE PERSON, during National CRPS Awareness Month to make a difference? I am so glad you asked! </span><br /><br /><span style="line-height: 1.5;">Take a minute each day during National CRPS Awareness Month (November), and <span style="color: #2a2a2a;"><strong>send out one fact about CRPS</strong>.</span> You can <a href="http://www.rsdhope.org/november-2013-national-crps-awareness-month.html" style="color: #990000; text-decoration: none;" title="">learn more about Tonya's idea here.</a> </span><span style="line-height: 1.5;">If you enjoy doing it, continue the project by sending out one fact each week or every other week for the entire year. When you<em style="position: relative;"><strong><span style="color: #2a2a2a;"> include a link for more information with your fact</span></strong></em>, eventually everyone will know all about CRPS!</span><br /><br /><span style="line-height: 1.5;">Thanks to you, each and every one of you. </span><br /><br />Peace,<br />Keith Orsini<br /><a href="http://www.rsdhope.org/" style="color: #990000; text-decoration: none;" target="_blank">American RSDHope</a><br /><a href="http://www.rsdhope.org/" style="color: #990000; text-decoration: none;" target="_blank">www.RSDHope.org</a><br /><br />Any questions, please submit them to <a href="mailto:RSDHope@mac.com" style="color: #990000; text-decoration: none;" title="">RSDHope </a>;-)<br /></div>
Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-50526857971548926302013-09-02T16:59:00.001-04:002013-09-02T17:12:22.368-04:00Disabled With Fibromyalgia? Applying For Social Security Disability? You will want to read this!<br />
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<span style="letter-spacing: 0.0px;"><b>Social Security Administration passes new Disability Ruling for those with Fibromyalgia! </b></span></div>
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<span style="letter-spacing: 0.0px;"><b>September, 2013</b></span></div>
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<span style="letter-spacing: 0.0px;"><b>What does this mean? </b></span></div>
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<span style="letter-spacing: 0.0px;">This Social Security Ruling (SSR) provides guidance on how we develop evidence to establish that a person has a medically determinable impairment (MDI) of fibromyalgia (FM), and how we evaluate FM in disability claims and continuing disability reviews under titles II and XVI of the Social Security Act (Act).</span><span style="color: #202c9a; letter-spacing: 0.0px;">[1]</span></div>
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<span style="letter-spacing: 0.0px;"><b>When did it go into effect?</b> </span></div>
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<span style="letter-spacing: 0.0px;">Effective date was July 25, 2012.</span></div>
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<span style="letter-spacing: 0.0px;">Publication date was July 25, 2012</span></div>
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<span style="letter-spacing: 0.0px;">Federal Register Volume 77, No.143, Page 43640</span></div>
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<span style="letter-spacing: 0.0px;">http://www.socialsecurity.gov/OP_Home/rulings/PDF/2012-17936.pdf</span></div>
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<span style="letter-spacing: 0.0px;"><b>Where can I go to learn more? </b></span></div>
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<span style="letter-spacing: 0.0px; text-decoration: underline;"><a href="http://www.socialsecurity.gov/OP_Home/rulings/di/01/SSR2012-02-di-01.html">http://www.socialsecurity.gov/OP_Home/rulings/di/01/SSR2012-02-di-01.html</a></span></div>
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<span style="letter-spacing: 0.0px;"><b>What is needed for a diagnosis of Fibromyalgia?</b></span></div>
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<span style="letter-spacing: 0.0px;"><b>Introduction</b></span></div>
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<span style="letter-spacing: 0.0px;">FM is a complex medical condition characterized primarily by widespread pain in the joints, muscles, tendons, or nearby soft tissues that has persisted for at least 3 months. FM is a common syndrome.</span><span style="color: #202c9a; letter-spacing: 0.0px;">[2]</span><span style="letter-spacing: 0.0px;"> When a person seeks disability benefits due in whole or in part to FM, we must properly consider the person's symptoms when we decide whether the person has an MDI of FM. As with any claim for disability benefits, before we find that a person with an MDI of FM is disabled, we must ensure there is sufficient objective evidence to support a finding that the person's impairment(s) so limits the person's functional abilities that it precludes him or her from performing any substantial gainful activity. In this Ruling, we describe the evidence we need to establish an MDI of FM and explain how we evaluate this impairment when we determine whether the person is disabled.</span></div>
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<span style="letter-spacing: 0.0px;"><b>Policy Interpretation</b></span></div>
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<span style="letter-spacing: 0.0px;">FM is an MDI when it is established by appropriate medical evidence. FM can be the basis for a finding of disability.</span></div>
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<li style="color: #333233; font-family: Helvetica; margin: 0px 0px 1px;"><span style="letter-spacing: 0.0px;"><b><i>What general criteria can establish that a person has an MDI of FM?</i> </b> </span><span style="letter-spacing: 0px;">Generally, a person can establish that he or she has an MDI of FM by providing evidence from an acceptable medical source.</span><span style="color: #202c9a; letter-spacing: 0px;">[3]</span><span style="letter-spacing: 0px;"> A licensed physician (a medical or osteopathic doctor) is the only acceptable medical source who can provide such evidence. We cannot rely upon the physician's diagnosis alone. The evidence must document that the physician reviewed the person's medical history and conducted a physical exam. We will review the physician's treatment notes to see if they are consistent with the diagnosis of FM, determine whether the person's symptoms have improved, worsened, or remained stable over time, and establish the physician's assessment over time of the person's physical strength and functional abilities.</span></li>
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<li style="color: #333233; font-family: Helvetica; margin: 0px 0px 1px;"><span style="letter-spacing: 0.0px;"><b><i>What specific criteria can establish that a person has an MDI of FM?</i> </b>We will find that a person has an MDI of FM if the physician diagnosed FM and provides the evidence we describe in section II.A. or section II. B., and the physician's diagnosis is not inconsistent with the other evidence in the person's case record. These sections provide two sets of criteria for diagnosing FM, which we generally base on the 1990 American College of Rheumatology (ACR) Criteria for the Classification of Fibromyalgia</span><span style="color: #202c9a; letter-spacing: 0.0px;">[4]</span><span style="letter-spacing: 0.0px;"> (the criteria in section II.A.), or the 2010 ACR Preliminary Diagnostic Criteria</span><span style="color: #202c9a; letter-spacing: 0.0px;">[5]</span><span style="letter-spacing: 0.0px;"> (the criteria in section II.B.). If we cannot find that the person has an MDI of FM but there is evidence of another MDI, we will not evaluate the impairment under this Ruling. Instead, we will evaluate it under the rules that apply for that impairment.</span></li>
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<span style="letter-spacing: 0.0px;">A.<b> <i>The 1990 ACR Criteria for the Classification of Fibromyalgia.</i></b> Based on these criteria, we may find that a person has an MDI of FM if he or she has all three of the following:</span></div>
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<li style="color: #333233; font-family: Helvetica; margin: 0px 0px 1px;"><span style="letter-spacing: 0.0px;">A history of widespread pain—that is, pain in all quadrants of the body (the right and left sides of the body, both above and below the waist) and axial skeletal pain (the cervical spine, anterior chest, thoracic spine, or low back)—that has persisted (or that persisted) for at least 3 months. The pain may fluctuate in intensity and may not always be present.</span></li>
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<span style="letter-spacing: 0.0px;">2. At least 11 positive tender points on physical examination (see diagram below). The positive tender points must be found bilaterally (on the left and right sides of the body) and both above and below the waist.</span><br />
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<span style="letter-spacing: 0.0px;">a. The 18 tender point sites are located on each side of the body at the:</span></div>
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<li style="color: #333233; font-family: Helvetica; margin: 0px 0px 1px;"><span style="letter-spacing: 0.0px;">Occiput (base of the skull);</span></li>
<li style="color: #333233; font-family: Helvetica; margin: 0px 0px 1px;"><span style="letter-spacing: 0.0px;">Low cervical spine (back and side of the neck); Trapezius muscle (shoulder);</span></li>
<li style="color: #333233; font-family: Helvetica; margin: 0px 0px 1px;"><span style="letter-spacing: 0.0px;">Supraspinatus muscle (near the shoulder blade); Second rib (top of the rib cage near the sternum or breast bone);</span></li>
<li style="color: #333233; font-family: Helvetica; margin: 0px 0px 1px;"><span style="letter-spacing: 0.0px;">Lateral epicondyle (outer aspect of the elbow);</span></li>
<li style="color: #333233; font-family: Helvetica; margin: 0px 0px 1px;"><span style="letter-spacing: 0.0px;">Gluteal (top of the buttock);</span></li>
<li style="color: #333233; font-family: Helvetica; margin: 0px 0px 1px;"><span style="letter-spacing: 0.0px;">Greater trochanter (below the hip); and</span></li>
<li style="color: #333233; font-family: Helvetica; margin: 0px 0px 1px;"><span style="letter-spacing: 0.0px;">Inner aspect of the knee.</span></li>
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<span style="letter-spacing: 0.0px;">b. In testing the tender-point sites,</span><span style="color: #202c9a; letter-spacing: 0.0px;">[6]</span><span style="letter-spacing: 0.0px;"> the physician should perform digital palpation with an approximate force of 9 pounds (approximately the amount of pressure needed to blanch the thumbnail of the examiner). The physician considers a tender point to be positive if the person experiences any pain when applying this amount of pressure to the site.</span><br />
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<span style="letter-spacing: 0.0px;">3. Evidence that other disorders that could cause the symptoms or signs were excluded. Other physical and mental disorders may have symptoms or signs that are the same or similar to those resulting from FM.</span><span style="color: #202c9a; letter-spacing: 0.0px;">[7]</span><span style="letter-spacing: 0.0px;"> Therefore, it is common in cases involving FM to find evidence of examinations and testing that rule out other disorders that could account for the person's symptoms and signs. Laboratory testing may include imaging and other laboratory tests (for example, complete blood counts, erythrocyte sedimentation rate, anti-nuclear antibody, thyroid function, and rheumatoid factor).</span></div>
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<span style="letter-spacing: 0.0px;">See the <a href="http://www.buzzle.com/images/diagrams/fibromyalgia-tender-points.jpg" target="_blank">TENDER POINTS OF FIBROMYALGIA ILLUSTRATION</a></span></div>
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from Medicinenet</div>
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or <a href="http://img.medscape.com/article/722/159/722159-fig1.jpg" target="_blank">VIEW THE TENDER POINTS OF FIBROMYALGIA </a></div>
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from Medscape</div>
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<span style="letter-spacing: 0.0px;"><i>The 2010 ACR Preliminary Diagnostic Criteria.</i> Based on these criteria, we may find that a person has an MDI of FM if he or she has all three of the following criteria</span><span style="color: #202c9a; letter-spacing: 0.0px;">[8]</span><span style="letter-spacing: 0.0px;">:</span></div>
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<span style="letter-spacing: 0.0px;">1. A history of widespread pain (see section II.A.1.);</span></div>
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<span style="letter-spacing: 0.0px;">2. Repeated manifestations of six or more FM symptoms, signs,</span><span style="color: #202c9a; letter-spacing: 0.0px;">[9]</span><span style="letter-spacing: 0.0px;"> or co-occurring conditions,</span><span style="color: #202c9a; letter-spacing: 0.0px;">[10]</span><span style="letter-spacing: 0.0px;"> especially manifestations of fatigue, cognitive or memory problems (“fibro fog”), waking unrefreshed,</span><span style="color: #202c9a; letter-spacing: 0.0px;">[11]</span><span style="letter-spacing: 0.0px;"> depression, anxiety disorder, or irritable bowel syndrome; and</span></div>
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<span style="letter-spacing: 0.0px;">3. Evidence that other disorders that could cause these repeated manifestations of symptoms, signs, or co-occurring conditions were excluded (see section II.A.3.).</span></div>
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<span style="letter-spacing: 0.0px;"></span></div>
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<span style="letter-spacing: 0.0px;">This information is all from the Social Security website,and can be found here;</span></div>
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<span style="letter-spacing: 0.0px;">http://www.socialsecurity.gov/OP_Home/rulings/di/01/SSR2012-02-di-01.html They also have much more information there such as; documentation needed to prove your diagnosis, additional information that might be collected, types of tests, etc. The usual things that apply to anyone who is applying for Social Security Disability, or SSD. </span></div>
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<span style="letter-spacing: 0.0px;"></span><br /></div>
<div style="font-family: Helvetica;">
<span style="letter-spacing: 0.0px;">If you would like more information on Fibromyalgia please </span></div>
<div style="font-family: Helvetica;">
<span style="letter-spacing: 0.0px;">The National Fibromyalgia and Chronic Pain Association. </span></div>
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<span style="letter-spacing: 0.0px;"></span><br /></div>
<div style="font-family: Helvetica;">
<span style="letter-spacing: 0.0px;">They are a fantastic resource and will help you through this difficult diagnosis. They also have a wonderful newsletter and in the latest issue you can read all about how this SSD Ruling came about!</span></div>
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<span style="letter-spacing: 0.0px;"></span><br /></div>
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<span style="letter-spacing: 0.0px;">As a side note; many CRPS patients who have CRPS for a few years seem to have a greater tendency to develop Fibromyalgia.</span></div>
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<span style="letter-spacing: 0.0px;"></span><br /></div>
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<span style="letter-spacing: 0.0px;">Or you can visit our website;</span></div>
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<span style="letter-spacing: 0.0px;"></span><br /></div>
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<span style="letter-spacing: 0.0px; text-decoration: underline;"><a href="http://www.rsdhope.org/fibromyalgia-articles.html">http://www.rsdhope.org/fibromyalgia-articles.html</a></span></div>
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<span style="letter-spacing: 0.0px;"></span><br /></div>
<div style="font-family: Helvetica;">
<span style="letter-spacing: 0.0px;">Peace, Keith Orsini</span></div>
<div style="font-family: Helvetica;">
<span style="letter-spacing: 0px;"><a href="http://www.rsdhope.org/" target="_blank">American RSDHope </a></span></div>
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<span style="letter-spacing: 0.0px;"><br /></span>
<span style="letter-spacing: 0.0px;">PS - If you have any comments regarding this article either post them here or send them to <a href="mailto:RSDHope@mac.com" target="_blank">Keith at RSDHope.</a></span><br />
<span style="letter-spacing: 0.0px;"><br /></span>
<span style="letter-spacing: 0.0px;">PSS - Don't forget to get your copy of the National CRPS Awareness Ribbon from the American RSDHope website.</span><br />
<span style="letter-spacing: 0.0px;"><br /></span>
<span style="letter-spacing: 0.0px;">Information for this article from the <a href="http://www.socialsecurity.gov/OP_Home/rulings/di/01/SSR2012-02-di-01.html" target="_blank">SS website</a> -</span></div>
Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-78870759580631510892013-07-05T00:10:00.004-04:002013-07-05T00:10:48.794-04:00CERVICAL Nerve Block - Epidural Steroid Block - December I just realized that this post did not get , well, posted! It got sent into my "drafts" folder.<br />
<br />
So I have made a few edits and posted it. Sorry for the delay.<br />
<br />
My second Cervical Epidural steroid block, for my neck pain, the arthritis or whatever you wish to call it, went so much better!!!!! YEAH!!!!<br />
<br />
I had it done around November 7th..<br />
<br />
Two reasons;<br />
<br />
1) Steroid medications generally take anywhere from 4 or 5 days to a few weeks to really kick in.<br />
<br />
BUT, the real reason is because of the excellent nursing staff at the Unifor Pain Clinic. What I didn't know when I had the first one done was that I could have had it done at my own Pain Clinic! No one told me, they just automatically set it up at the other place, no names mentioned. Which as you saw from the above post, was a huge mistake. IV issues can be huge, even with a very trained nursing staff.<br />
<br />
People! Do NOT take the issue of IV insertion lightly. If you ever have ANY problems with having an IV inserted into your arm, hand, etc. because of your disease (CRPS) do not hesitate to let the staff know ahead of time.<br />
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What is an ISSUE?<br />
<br />
I will explain, since this third time I had a block done (well, third time in 2012 anyway) , I had a great nurse, great staff, and still I had an issue. Sometimes, as they say, <i><b>things</b></i> just happen. Plus, I made a mistake. Let me share my experience and you can see if anything similar ever happened to you.<br />
<br />
First, my mistake.<br />
<br />
I had blood drawn the day before my block. I have it drawn about every six months to check on my various levels, vitamins, blood counts, liver functions, white blood cells count, etc. So many diseases going on, need to keep track and make sure everything is ok. I even went to my GP's second office further away just so I could have his main nurse do the blood draw since she is much better at it and more gentle. had her her use my left arm, the crook of the arms, she used a butterfly needle, smallest there is. (always ask for this guys). She had a little trouble with the vein as usual, my veins tend to move around and disappear. This is also not unusual for CRPS patients. This is part of the problem.<br />
<br />
For the block the next day I had shaved the top of my hand so they could set up the IV there. Yes, it is more painful there but they always have trouble setting up the IV in the crook of my arm and end up going to the hand in the end where the veins are easier to see, find, and spear.<br />
<br />
I explained to the nurse (new to me but not to the facility) that my veins move, or sometimes they simply collapse despite the fact that as they get ready to stick me they look maH-vah-lous, as Billy Crystal would say. Especially the veins in my arms, and that she should use the veins in my hand, and yes, I knew it was a much more painful place to do it but as long as they rubbed some numbing solution on it first, waited for that to take effect, then injected some pain meds into it, waited for that to take effect, and THEN injected the needle to give me the set up the IV line.<br />
<br />
My mistake was having the blood draw the day before my procedure. Neither myself nor my Doctor felt it was an issue at the time and he is still perplexed as to why it became one. Chalk up another one for the strange world of CRPS.<br />
<br />
I have had countless nerve blocks over the many decades I have had CRPS. I have had many different types as well. The procedure was nothing new to me. However, the reaction that occurred, well, THAT was something very new.<br />
<br />
So what happened?<br />
<br />
The <a href="http://www.rsdhope.org/cervical-nerve-block.html" target="_blank">cervical block</a> (upper body block) proceeded as normal. I always ask for enough meds to pretty much knock me out enough so he walks over to the bed, says "Are you ready for your block Keith?" I say, "Yup." They wheel me into the procedure room. I switch over from the portable bed to the OR bed. I talk to the nurse for a second. I make sure the blankets are warm ( see <a href="http://www.rsdhope.org/crps-the-er-hospitals-and-surgery.html" target="_blank">CRPS, THE HOSPITALS, AND SURGERY </a>, specifically see number 3) and then I start counting back from 100. I never make it past around 89 I think.<br />
<br />
Next thing I know I am in the recovery area and the nurses are checking up on me. Again, so what happened?<br />
<br />
It didn't happen until after I got home. Everything seemed fine. Normal reaction. I left the clinic when I felt "normal" again, steady on my feet. Felt like a normal post-block time. But within a few hours I noticed that my face was starting to turn red, then my hands. By that evening my entire upper body had turned a dark shade of red; from the top of my head to my a little bit above my waist. It included both of my arms, both hands, shoulders, chest, face, etc.<br />
<br />
It was the same shade of red that occurs when my CRPS is in flare. Some of you CRPS patients out there might know what I am talking about and may experience the same thing, where part of your body turns different colors when you have a flare coming on or during the actual flare; when the pain exacerbates (gets much worse) due to something you did, a change in the weather, stress, a medical procedure, etc.<br />
<br />
The problem was I had never had it happen before where the entire upper half of my body went red before! Despite the fact that my CRPS is full-body. I was pretty nervous, I didn't know what was happening. I thought maybe it was a reaction to the medication they used or a dye or something so I called the clinic and they told me if it doesn't go away by morning to come in first thing. It wasn't causing me any extra pain though except in my left hand which was quite painful, the rest was just looking like I got caught in the sun.<br />
<br />
Next day I went in to the clinic so they could see for themselves. Very weird. They had no idea, had not seen anything like it before. Since it was not causing me pain we decided to just let it be and watch it.<br />
<br />
It lasted for weeks. Here are a couple of pictures from that time. The first is the hand where the IV was inserted. Not sure if you can see how red my body was in the pics, it doesn't show too well. I took these about ten days into it. The purpley patch is the actual IV site.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmT71Q5818vzDsRpuLQvA4MuXY4YDApm3o5EI6AlD0o2BNBCW4iprl57XkPpzWHj_gpwm5z7-t9IcBtWhVEafKV3nouhrB55aeUv7efnIZ8P0cEHUg23DrfxERth9oylxrWLxAcwrPT5U/s1280/Image.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img alt="" border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmT71Q5818vzDsRpuLQvA4MuXY4YDApm3o5EI6AlD0o2BNBCW4iprl57XkPpzWHj_gpwm5z7-t9IcBtWhVEafKV3nouhrB55aeUv7efnIZ8P0cEHUg23DrfxERth9oylxrWLxAcwrPT5U/s200/Image.jpg" title="Keith's left hand showing IV site and reaction" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Keith's hand - IV site</td></tr>
</tbody></table>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3BSWDzvZqyqWxTj1hG1CKbHLJnsbTmHHoenFZp43Tu4DVllSsOnxK9bJstL2M_wy_UPpCYmm4XGzBAmOh3kOu-XrdYXB0rMAk7skRnmAWqg27RL77fK4DZTZSgOoOaQCcpIP8lL9M2VI/s1280/IMG_1848.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img alt="" border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3BSWDzvZqyqWxTj1hG1CKbHLJnsbTmHHoenFZp43Tu4DVllSsOnxK9bJstL2M_wy_UPpCYmm4XGzBAmOh3kOu-XrdYXB0rMAk7skRnmAWqg27RL77fK4DZTZSgOoOaQCcpIP8lL9M2VI/s200/IMG_1848.jpg" title="keith's chest pic showing redness, reaction" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Keith's chest showing redness, reaction - cervical block</td></tr>
</tbody></table>
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Eventually it all calmed down and the redness went away, it took about seven weeks I believe. I was very lucky. The pain in the left hand took a little longer to go away, about nine weeks altogether before I could type with it again.<br />
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Lesson learned.<br />
<br />
Be careful out there.<br />
<br />
Peace, <a href="mailto:RSDHope@mac.com" target="_blank">Keith Orsini</a><br />
<br />
<a href="http://www.rsdhope.org/" target="_blank">American RSDHope</a><br />
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<br />Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-83387935890710814442013-06-18T00:18:00.001-04:002013-06-18T00:18:24.756-04:00Newly diagnosed with CRPS where do I go for information?This is a question we get quite often at American RSDHope. Unfortunately it is a question that we also <i><b>don't get</b></i> <i>often enough</i> because they got answers themselves by going to various websites on the internet that purported themselves as "RSD" or "CRPS Informational websites".<br />
<br />
Some of you are saying "Huh???"<br />
<br />
Here is what I am saying.<br />
<br />
There are two national non-profit organizations who have dedicated themselves for decades solely to helping RSD and now CRPS patients and their loved ones, as well as the Medical Community and the general public, better understand this horrific and extremely complicated disease; the American RSDHope Organization ( www.RSDHope.org ) ; and the RSDSA ( www.rsdsa.org ).<br />
<br />
These two organizations, which often work together, have a ton of information on their websites dedicated solely to the disease of Complex Regional Pain Syndrome. They have it checked by physicians whose speciality is chronic pain, they work with physicians around the USA as well as other countries constantly to keep the information as up to date as possible. That is very, very important with CRPs because it is a very fast-moving disease. I don't mean the disease itself spreads quickly, I mean what we know about the disease has progressed rapidly over the last two decades, and even the last five years, especially. <br />
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Many CRPS patients, most probably, seem to fit into what is known as the "Type A" personality category. That means they are very aggressive in their approach to life. They don't tend to be couch potatoes, they are much more likely to say, "Ok, I have what? RSD? CRP-what? Ok. never mind. I will find information on it myself", and off they go in a never-ending quest on the internet through all hours of the night in search of every last scrap of information they can find on the disease. They also tend to want to share EVERY SINGLE piece of it, every article and tidbit, with anyone who is within earshot or email range. <br />
<br />
Normally you would say, "What's <i><b>wrong</b></i> with that? We <i>should</i> educate ourselves about our disease right?"Yes. normally you should. But CRPS is special. And not in a Saturday Night Live Dana Carvey Church Lady "<i>Isn't that Special?</i>" sort of way. (any of you youngin's out there who don't recognize that gem need to google Dana Carvey's old Church lady bits.<br />
<br />
I won't go into it too much because so many people have read and heard me rail on this subject many times and I don't want you tuning me out here. But the bottom line, quick and dirty; far too many websites out there have out of date or just plain wrong information on their websites in a bid to help their fellow patients deal with this disease.<br />
<br />
They mean well, I know that. I don't want to discourage them from wanting to help, just do it in another way. For medical information please direct them to one of the two national CRPS organizations, we have to stay updated, we have people for that. If someone comes to your website for help and they read something on a website you wrote that is no longer true, or something you may have copied from another website that is out of date, etc. With this disease folks, using outdated information, performing the wrong treatment, or the right treatment at the wrong time (too soon in the diagnosis or too late) could really cause serious problems.<br />
<br />
Perhaps you visit a website that talks about physical therapy. Seems harmless right? After all, it is very important to know how much you can move, or not right? So what do you do? Protect the affected limb? Put it in a boot? A cast? Swim? Walk on it to keep the ROM alive? Don't walk on it or the swelling will increase?<br />
<br />
What about ice? Maybe ice it down to bring down the swelling? But others say NOOO , don't use ice? Which is it? The answer for ice is if you use ice on the CRPS-affected limb you can not only possibly accelerate the disease but you run the risk of making the disease spread as well. There also exists the possibility of sending the CRPS even more quickly through the first or second stage and into the third. <br />
<br />
Shouldn't my Physical Therapist know what to do? The answer is yes but not all of them know the correct treatment for CRPS. Most do but some still have not become educated on the correct things to do, and what not to do. The information is all out there for the taking on both national websites, all they have to do is visit them. There are videos for the therapists to view and/or download, informational brochures, articles, and they can even talk directly to the people in either organizations office if they have any questions.<br />
<br />
What about Doctors? What kind of Doctors treat this disease? Again, answers are right on both RSDHope's and the RSDSA's websites.<br />
<br />
Signs? Symptoms? Treatments? Medications? Latest new therapies? Both websites and any questions you can call and/or email both organizations.<br />
<br />
The reason I am writing this article AGAIN is from time to time I peruse the internet, when I am up late at night. Many CRPS/chronic pain patients suffer from insomnia, like myself. I google CRPS or versions of it and find websites and look for mistakes. Not for "aha moments! or "gotcha! moments", but in the hope that we can correct them and encourage them to instead simply have them send people to our website or the RSDSA's website. I am always saddened by the amount of incorrect information out there, oftentimes masquerading as medical fact on one news website or another.<br />
<br />
I read one tonight that purported to be heavy on research on the brain and CRPS but it was chock full of inaccuracies. It didn't even have HOW people can get the disease right! Didn't even have the definitions of CRPS Type I and Type II correct ! It was even written, put together, in the last year.<br />
<br />
It makes me angry, yes, because people can get hurt by reading and following the information contained in these websites. They can ruin people's lives, change them permanently!!!! This is a bad enough disease as it is without hurting them after the fact with incorrect information regarding blocks, physical therapy, SSDisability, medications, and even Doctors.<br />
<br />
Please everyone, if you are a CRPS patient, think you might be, have someone you love who is or might be, send them or go yourself to American RSDHope's website www.RSDHope.org or the RSDSA's website www.rsdsa.org and get the correct information right off the bat.<br />
<br />
CRPS Description, definition, stages, how is it diagnosed, differences between Type I and Type II, CRPS awareness, the national CRPS Awareness Ribbon, CRPS videos and audios, treatments, ketamine, HBOT, medications, terminology, FAQ's, SSDisability, Support groups, links, articles, info for loved ones, and so so much more.<br />
<br />
any questions please always feel free to email me directly<br />
<br />
peace to you all;<br />
<br />
Keith<br />
<br />
American RSDHope<br />
www.RSDHope.org<br />
rsdhope@mac.org <br />
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Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-32579835511877764732013-03-28T21:48:00.001-04:002013-03-28T21:48:18.370-04:00CRPS Brochures available and new CRPS Bracelets <b>CRPS AWARENESS BROCHURE ALL NEW APRIL 2013</b><br />
<br />
New and updated CRPS informational brochure is now available on American RSDHope's website.<br />
<br />
We totally re-designed the<a href="http://www.rsdhope.org/awareness.html" target="_blank"> CRPS / RSD brochure </a>in March 2013, put it on glossy white card stock, the National CRPS Awareness Ribbon is poppin' on the cover, and if you get some to place in your Doctor's office or local hospital they are sure to catch people's eyes!<br />
<br />
The first ones will be mailed out on April 1st, no joke! We will be sending 20 FREE copies to every CRPS/RSD Support Group we have listed on our website to help them get started on getting the word out. That is ONE THOUSAND CRPS BROCHURES hitting the streets right off the bat!<br />
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<b>NEW CRPS AWARENESS BRACELET!</b><br />
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We have also added a brand new CRPS Awareness Bracelet designed by the PuraVida company! It is a very pretty bracelet that shows all the colors of the National Awareness CRPS Ribbon. You can read all about it and even order your own, for only $5, by <a href="http://www.rsdhope.org/national-crps-awareness-pins--bracelets.html" target="_blank">VISITING HERE</a>!<br />
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We have made a lot of changes to the website in many different palces as well.<br />
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<b>AMERICAN RSDHOPE LAUNCHES THEIR FACEBOOK PAGE</b>!<br />
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Have you visited <a href="http://www.rsdhope.org/facebook-page.html" target="_blank">American RSDHope's FaceBook page</a> yet? It isn't a huge, glossy, amazing page by any stretch of the imagination. We didn't want to take the time away from the work we do on the main <a href="http://www.rsdhope.org/" target="_blank">RSDHope website</a>, but what it IS and how it can benefit you to visit it and LIKE our page, is because what we do there is send out updates.<br />
<br />
Whenever we update the website, add new sections, update existing sections, put out information (such as the info above), put out a notice such as the upcoming <a href="http://www.rsdsa.org/" target="_blank">RSDSA</a> conference, we put that notice out on FB as well. So while we encourage you to drop by our main website as often as possible to increase your knowledge of this disease (there is so much to learn), it is a great addition to have the FB page "liked" so you stay current on additions to the site.<br />
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That's all for now guys,<br />
<br />
I won't promise I will try to post more often because I keep doing that and then don't follow through. As someone in the movies once said; there is doing and not doing, there is no try.<br />
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Peace and freedom from pain, it is all we seek;<br />
<br />
Keith<br />
<br />
American RSDHope<br />
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<a href="http://www.rsdhope.org/crps-national-crps-awareness-ribbon.html" target="_blank">National CRPS</a></div>
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<a href="http://www.rsdhope.org/crps-national-crps-awareness-ribbon.html" target="_blank">Awareness Ribbon </a></div>
<br />Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-54153190521673641342012-12-10T02:49:00.001-05:002012-12-10T02:49:25.042-05:00CRPS Thanksgiving stress and Increased pain Levels - Is there a correlation ?CRPS patients often ask me why their pain levels seem to increase around holiday times.<br />
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Not just for the few hours that that their dear loved ones are visiting you and sharing their very favorite "<b><i>home remedies"</i></b> that they are sure will "<i>cure you</i>" of all their "<i>supposed pain issues</i>" because; "<i>they too once had <b>real bad pain</b> so <b>they know exactly</b> what <b>you</b> are going through</i>". </div>
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Sound familiar? Have you been given the list of home remedies from the family? Sure to cure your chronic pain? Maybe even a list of names of their favorite Doctors? </div>
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Or maybe you had the always fun conversation that starts out, "I know a guy who had the exact same thing as you and he went to this guy and he was cured in a New York minute", and the next thing you know five people in the room are all loudly discussing your situation and trying to figure out the names of the "two guys", the one who was miraculously cured and the amazing healer. </div>
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Holiday gatherings can be difficult places to be for chronic pain patients for a number of reasons, the ones listed above are just a few. There are also;</div>
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1) The problems that come with your not being able to eat certain foods because they make your pain worse, they interact with your medications, or perhaps because of your pain, medication side effects, etc., you just have no desire to eat. Trying to explain, or even having to explain, any of the above can be stressful, difficult, and frankly just something you are tired of having to explain.</div>
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2) The stress of a typical gathering of relatives at holiday time can be high for a "normal" person, a healthy person; extra people in the house, people are tired from traveling, not getting enough sleep, too many people in too small a space, old grudges always seem to surface, and this large group of people who would not normally gather together were it not for the fact that they happened to be born into the same family, can drive everyone's stress level through the roof. But for someone living with CRPS stress can be a serious pain trigger. </div>
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High levels of stress trigger the body's fight or flight response. Basically our brains are hard-wired with this response to protect ourselves from harm. When this bodily reaction is triggered, it initiates a sequence of nerve cell firing and chemicals (like adrenaline) in preparation for our body to Fight or Run. Here is where things get problematic. Our brain gets a little one-way, seeing everything as a potential threat. Our bodies undergo changes as well, </div>
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There is overwhelming evidence that over-activation of our fight-flight response can lead to disorders of the autonomic nervous system because we cannot fight, we cannot flee, and it all leads to an cumulative build-up of stress hormones. </div>
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How does this relate to the symptoms of CRPS? Check that out on <a href="http://www.rsdhope.org/crps-symptoms.html" target="_blank">American RSDHope's CRPS Symptoms Page</a> The fourth main symptom CRPS patients deal with involves the Limbic system;</div>
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Insomnia & Emotional Disturbance. </div>
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Is there a way to be aware of the build-up ahead of time? To educate ourselves when our bodies are "gearing up" so to speak for an over activation of the response? If so, what do we look for?</div>
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According to Doctor Neil Neimark at the <a href="http://www.thebodysoulconnection.com/EducationCenter/fight.html" target="_blank">Mind Body Education Center,</a> yes, there are clues to look for, symptoms that you should be aware of. They are;</div>
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<span style="font-family: 'Book Antiqua';"><i>Physical symptoms like tension in our muscles, headache, upset stomach, racing heartbeat, deep sighing or shallow breathing. </i></span></div>
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<span style="font-family: 'Book Antiqua';"><i>Others may experience them as emotional or psychological symptoms such as anxiety, poor concentration, depression, hopelessness, frustration, anger, sadness or fear.</i></span></div>
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<span style="font-family: 'Book Antiqua';"><i>Excess stress does not always show up as the "feeling" of being stressed. Many stresses go directly into our physical body and may only be recognized by the physical symptoms we manifest. Two excellent examples of stress induced conditions are "eye twitching" and "teeth-grinding." Conversely, we may "feel" lots of emotional stress in our emotional body and have very few physical symptoms or signs in our body.</i></span></div>
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<span style="font-family: 'Book Antiqua';"><i>(information from <a href="http://www.thebodysoulconnection.com/EducationCenter/fight.html" target="_blank">The Mind Body Education Center</a>)</i></span></div>
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<span style="font-family: 'Book Antiqua';">So now that we are aware of what to look for, know the type of </span><span style="font-family: Book Antiqua;">situations that we might find ourselves in that can bring out the stress in ourselves (based on past personal experience), what can we do once we have triggered these responses? To quiet our bodies back down? To lower our stress level and thereby lower our pain level? Does it take hours? Days? Weeks? Do we have to remove ourselves from the situation entirely or can we just go to a quiet corner for a few moments and utter Kramers "Serenity Now" chant a few hundred times and we're good?</span></div>
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<span style="font-family: Book Antiqua;">end or part one - </span></div>
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Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-47156652447002876242012-10-08T03:51:00.000-04:002012-10-08T03:51:21.486-04:00Cervical Nerve Block - what a pain in the neckOk, that was bad. But so is the pain.<br />
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I have been dealing with incredible neck, shoulder, back, and arm pain for months now. One reason, the main reason, I have not made more posts here. I have not spent much time on-line anywhere, not here or on the website. My answers to emails have been as short as I could make them. The pain of doing anything with my arms has been excruciating. probably should use shorter words too. Guess using long words comes from all those college term papers where you had to fill up so many pages and using long words helped immensely.<br />
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So, what did we do to try and solve this conundrum? (hard to break the habit, sorry).<br />
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What all of your Drs have done in the past I am sure, you will recognize the theme, most insurance companies require it anyway. Music please!<br />
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Doc, I really think I need an MRI.<br />
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Passive therapy first please. Let's start there.<br />
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Ok. But then can we do an MRI? <br />
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We'll see. (the most dreaded words any child, and then any husband, wants to hear. We all know what they really mean).<br />
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Go to PT and learn new exercises, some there, some more to take home.<br />
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Pain continues. I suggest to the therapist that she send in her report early and maybe suggest 1) MRI and 2) aqua therapy. She agrees and does.<br />
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Next appointment. How is the pain? Same, maybe a little worse. Did you get the PT's report? Yes. Can we do the MRI? Not yet, but try the aqua therapy.<br />
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We try the aqua therapy. I happened to hit my foot in the meantime, trying to avoid my cat in the house, stub my foot, it sets off a nasty CRPS flare. I sure hate this darn disease. The aqua therapy doesn't help the neck/shoulder/arm pain but does calm down the CRPS flare in the foot/lower leg. yeah!<br />
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back to Dr. How is pain? worse. Can we do MRI? Yes. Three months down the road now. I hate insurance companies. I know he had to wait, to show we tried other things before we did MRI.<br />
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Now we wait for ten days for insurance company to approve MRI. Finally do. have MRI. Then we wait for three weeks for appointment to review MRI and maybe do epidural cervical block.<br />
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How many months now? argggh.<br />
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ok. So on Wednesday I had my appointment for the review/block. Keith, the good news is that you don't have a new herniated disc in your neck. yeah! The bad news is that what it IS is, <b><a href="http://orthoinfo.aaos.org/topic.cfm?topic=a00369" target="_blank">cervical spondylosis</a></b> , also called arthritis of the neck. He said, in some people it is not an issue. Many people can have the same looking MRI at this age and not have a problem. Others, like you, can have severe pain, or flare-ups, from time to time.<br />
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Um ok. Four+ months of lots of pain. Lots! neck, shoulders (both), arms (both). He said that we needed to do an epidural cervical block. Not a big deal he said, just like the one we did in your back a few months back (I need one in my back about once every 9 or 10 months for the disc issues there). Except the last one took a long time to recover from for some reason. Not sure if it was the different medication used or just age or some other reason. But I have had blocks of many types in many areas over the years; back, lower, middle, many of them; back of head (for migraines); heck, even right in the eye before my corneal transplant! So I am used to injections. Then he said, plus we will need to get you back here in three weeks for two more to really put this thing to bed. Fine by me, whatever it takes to stop this pain.<br />
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I am used to the CRPS pain by now, the level I have been having anyway for the last few years, even the back pain level, and all the other pain issues. It is the flares of the pain problems that seem to kick my butt because they seem to rile up everything else as well. it is kind of like living in a house full of animals, or probably kids. If everyone is calm and quiet it isn't too bad, even if there are a lot of them. But if one starts getting loud, then everyone starts getting loud. Pretty soon there is all kinds of noise going on and it is hard to get everything calmed down again.<br />
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So my pain right now is about a 9.5 and it is usually an 8 or so. An 8 for a chronic pain patient. That isn't too bad. You chronic pain patients out there understand me when I say there is a BIG difference between an 8 and even a 9 and a huge difference between a 9 and a 9.5. I rarely say I am having a 10 day because I know there is nothing above that.<br />
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(this is why we are with the group of individuals and organizations that is working on trying to develop a new pain scale for chronic pain patients that will be used across the country, the current one simply does not apply to CP patients. It is really just laughable to apply to us).<br />
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BUT, here is the issue. The nurse who starts the IV line (something that is covered, I assume, in month one of nursing school) can't get it started and decides she is going to have the plastic needle thing go and visit every square mm of space inside of arm possible looking for the vein she missed, despite my repeated cries of pain. I finally convince her to take it out. I think it was the third "Take it out!" that did it. I had explained to her, before she started, that I had CRPS, RSD, and that she had to be very careful when finding the vein and starting the IV, use the smallest needle possible, and please be gentle. I said the veins tend to move and disappear. I said you might want to use the hand area instead. ok. Nope.<br />
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It was the second time in two months I ended up with a baseball size bruise due to this process. I explained to her and the staff and the Dr that venipuncture CRPS is the most painful form of CRPS that exists and it starts due to getting stuck with a needle giving blood or starting an IV! <br />
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Makes me nervous about the next time but I will do two things. I will bring in an article about venipuncture CRPS and I will make sure they have the most experienced nurse on the floor, or the Dr, do the IV line this time. I am also going to go in this week and share the same article. I already wrote the clinic about it and talked to them on the phone about it. They were very nice and knew about the issue already. I know some may think I am being a pain in the ass about it and I am not trying to get that nurse in trouble for it, but I don't want a new CRPS site or flare, nor do I want some unknowing person to end up with this crappy disease because someone does not know how to put in an IV line anymore. There are enough CRPS patients already darn it. Let them be pissed off at me if that is what it takes to stop one more person from getting this disease.<br />
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Well, it is almost a week later and I don't feel much better but the Doc said it might be three weeks before I felt much effect from the block. Great.<br />
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Ok for now. Hopefully the months of August and September were much better for you guys!<br />
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remember, November is coming! <a href="http://www.rsdhope.org/crps-awareness.html" target="_blank">NOVEMBER IS CRPS AWARENESS MONTH!</a><br />
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Check out the website to see what is coming up for awareness. If you have something to post, some event, <a href="mailto:keeths@mac.com" target="_blank">send it on in to RSDHope</a> and we will post it there. A fundraiser, run, walk, etc. send it in. If you had one, send us the pictures and we will post it. Doesn't matter who you raised the money for, as long as it was raised for CRPS Awareness, let us share it with the CRPS Community.<br />
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Have a great CRPS Video you shared on youtube? Send us the link and your permission and we will out it into consideration for placement on our video/audio awareness page!<br />
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Want a copy of the <a href="http://www.rsdhope.org/crps-awareness.html" target="_blank">National CRPS Awareness Ribbon for your Facebook page? Check it out!</a><br />
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or how about one of the new <a href="http://www.rsdhope.org/awareness.html" target="_blank">National CRPS Awareness Ribbon Pins</a>! only $2 each or less if you buy them in quantity or for a fundraiser! or how about a <a href="http://www.rsdhope.org/awareness.html" target="_blank">CRPS Awareness Magnet for your car or truck! </a><br />
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I will close for now.<br />
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Have a good day folks. Sleep for me and for others who don't!<br />
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peace,<br />
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Keith<br />
<a href="http://www.rsdhope.org/" target="_blank">American RSDHope</a><br />
www.rsdhope.orgKeithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-9236966929479760632012-09-02T09:30:00.002-04:002012-09-02T09:30:36.827-04:00CRPS RSD and Nerve Blocks - Do they work? How quickly should they be done? <span class="Apple-style-span" style="border-collapse: separate; border-spacing: 0px; font-family: Helvetica;"></span><br />
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AH YES, WHAT A TITLE ! </div>
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I know, we just did this one didn't we? Seems like it but looking back it has been a while. I guess it is because we talk about it a lot on the <a href="http://www.rsdhope.org/rsdhope-teen-corner.html" target="_blank">RSDHope Teen Corner</a> and I get asked the question a lot by patients and loved ones who email us through our <a href="http://www.rsdhope.org/contact-us.html" target="_blank">Contact US form</a> at <a href="http://www.rsdhope.org/" target="_blank">American RSDHope</a>. </div>
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It is a very important question for CRPS patients</div>
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But it seems there are too many Drs out there who still haven't gotten the message. <b><i>One</i></b> Doctor who hasn't gotten the message is far too many in my mind. </div>
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Now before I start getting cards and letters, yes, I know. There are tons of wonderful Anesthesiologists who know exactly what they are doing when it comes to sympathetic nerve blocks (I always wanted to say that, like Jay Leno, <i>the cards and letters thing, not the Anesthesiologists thing</i>) . I realize that. But you would be shocked if I told you how often we hear from patients who are not even counseled about blocks, <b>not even told they should consider them until it is too late. </b></div>
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BLOCKS BLOCKS BLOCKS!!!!!! </div>
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Ok, here it is. </div>
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READ THE ARTICLE ON BLOCKS! </div>
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Read the article that discusses <a href="http://www.rsdhope.org/can-there-be-problems-with-a-block.html" target="_blank">CAN THERE BE PROBLEMS WITH A BLOCK?</a>, I have to add a new part after reading a new email I got today. </div>
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Also read the article that is at the bottom of that page <a href="http://www.rsdhope.org/smp-and-imp.html" target="_blank">SMP AND IMP, WHAT IS THE DIFFERENCE?</a> This is very very important. Did I say it was important? Let me say that again.<b> It is</b> <b>very, very important! </b></div>
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It is also key to understanding the following questions we get asked a lot.</div>
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<b>1) Is there a certain time period for getting sympathetic nerve blocks?</b> </div>
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In other words, is there a point in time after my injury, when my CRPS has started, that the sympathetic blocks will most likely no longer work? Or a time when they will be more helpful than another time? If so, what is it? Is it measured in weeks? Months? </div>
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<b>Answer - yes and no.</b> A time limit? Not really. You can get nerve blocks anytime and for a number of different reasons. They can help pain patients, and others, for a wide variety of reasons. We are only going to be addressing CRPS patients in this article and mainly focusing on the importance of early treatment with sympathetic nerve blocks. </div>
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So, <b>is there a time when those sympathetic nerve blocks will be <i>most effective?</i> </b>That is probably a better way to word the question. </div>
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<b>Yes</b>. The accepted wisdom is that if a patient is treated with sympathetic nerve blocks within the first 6-9 months they stand the best chance of putting the disease into remission, 12 months at the outside. This is the prime-time for treatment, the best window for attacking this disease. The younger the patient the better. That means post-onset of symptoms, not since diagnosis obviously. This can sometimes be a problem since it is not always easy to pinpoint when exactly the symptoms began since the <a href="http://www.rsdhope.org/crps-symptoms.html" target="_blank">symptoms of CRPS</a> can sometimes be quite bizarre. </div>
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There are exceptions of course, like with everything else associated with this disease, or to put it another way, there are no absolutes, so blocks are tried long after that 12 month window.</div>
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- Again, see - <a href="http://www.rsdhope.org/smp-and-imp.html" target="_blank">"SMP and IMP, What is the Difference?"</a> and <a href="http://www.rsdhope.org/can-there-be-problems-with-a-block.html" target="_blank">"Can There Be Problems With a Block?"</a> </div>
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Now, having said that, does that mean that Drs do not give CRPS patients sympathetic nerve blocks after the 12 month window? No. of course not. Because there is always a chance they will still work. Maybe a little, maybe a lot. it is a difficult disease to pin down and pin down absolutely. We have to work in generalizations. It is why it can be a very frustrating disease for Drs as well as patients. </div>
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It might help one patient in stage one, but not in stage two, you might show certain symptoms in stage two but not stage three, and vice versa. This is why WC and SSD cases are frustrating. Your symptoms may/may not be visible or as visible depending on the stage you are in or even the time of day, time of month, time of year, and a million other factors. <i>Something to take into consideration when you are making your Drs appointments, try to make them at different times of day each time you go, that way if you are one of those patients whose symptoms vary as the day goes along, like most of us, the Dr gets to see that. </i></div>
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<b>2) Is there a typical number of sympathetic nerve blocks that are given?</b> </div>
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Do they usually just give one, or three? Should I stop if the first one doesn't work? </div>
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<b>Answer - Usually they are given in a series of one to three, or three to five, depending on the Doctor or Clinic. </b></div>
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However, we still get a number of patients write to us who say their Dr has given them twenty or more sympathetic blocks, yet they still have a lot of pain. WHAT???!!! Is always my response. HUH????? How many? </div>
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I remember going to a conference for CRPS patients, actually it was still called RSD back then in 1995, and I was listening to Dr Hooshang Hooshmand speak. He was taking questions from the audience. I don't know how many of you got to hear him speak but he was a hoot and a holler. (for you city folk that means he was funny) He was always aghast at the incompetence of other Drs. I remember he had just finished talking about sympathetic nerve blocks and that after three blocks if they haven't worked by then, the chances of them helping you was pretty slim and after 12 months it was pretty much nil <i>especially </i>if the first three didn't work. </div>
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One patient raised her hand and said "<b><i>My</i></b> Dr says you can keep giving the blocks as long as you want. <b><i>I</i></b> have gotten over <i><b>100</b></i> nerve blocks in the last three years." She had this smug little look on her face like she had proven Dr Hooshmand wrong. He just stared at her for a few minutes. You could have heard a pin drop. Everyone was looking back and forth between her and him. She was sitting in a wheelchair near the front. </div>
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He finally said "When did he tell you he thought they might start working? 125, 150, 175 blocks?"</div>
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She just sat there and looked at him, didn't know how to respond. No one said anything, not sure if he was serious or making a joke. I thought it was a hilarious response. But now, having heard quite a few other patients tell me their Dr has given them over 100 nerve blocks, I wonder if this is the same guy! </div>
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c'mon people! Wake up! I feel we need to make a poster for this possibility; "Don't let this happen to you!" and have a person with CRPS sitting in a clinic room lying on their stomach, beside a fluoroscope and on the table are 100 used syringes. </div>
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Fortunately it isn't as common as it used to be but there are still a few Drs out there who seem to do far too many sympathetic nerve blocks, in the twenties and above , when they are not helping at all! If they were helping the patient, that would be something else entirely, and if you are getting some from your Dr., a type of block and they <i>are</i> helping we certainly are not suggesting that you stop. Maybe it is a different type and/or for a different medical issue. There are many CRPS patients who develop other medical problems along the way; fibromyalgia or CFIDS for example. Many have also gotten into MVA's initially and developed CRPS as a result so they have significant injuries from that accident and may have back issues and they receive ongoing blocks of one type or another that help them. </div>
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Hey, if you get blocks and are in less pain, fantastic. </div>
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But ....</div>
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Listen, if the first ten aren't working, what makes you think the second ten will help? Or the second set of five if the first set of five didn't? </div>
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<b>The way sympathetic nerve blocks are supposed to work</b> is they build in success. Think of it like the crescendo at the end of a movie or a concert or a opera or a big drum solo or whatever you can relate to based on your age and music tastes.</div>
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<b><span style="color: red;">The music/drums starts out slowly </span></b></div>
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(first block a little relief, maybe hours, perhaps a day or longer), </div>
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<span style="color: red;"><b>then builds a little more, little louder now </b></span></div>
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(second block a little more relief, instead of a day maybe you get a week or two of relief)</div>
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<b><span style="color: red;">louder still, you can feel the ground start to shake </span></b></div>
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(third block really gives relief, instead of week or two maybe longer, 3 weeks or more)</div>
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So, if these three <i>work</i> one of two things will happen next. </div>
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1) The CRPS will start to recede and the Dr will wait before doing another block, to see what will happen. See if maybe it will go away on its own. The less times you inject the body, subject the body to a needle, the better. (one of the most painful forms of CRPS is called Venipuncture CRPS caused by a needle, it can even be caused by giving blood).</div>
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2) The Dr will try a fourth block to see if you can get even longer relief. </div>
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HOWEVER, if the Dr, (<i>typically an Anesthesiologist does these types of blocks by the way</i>), does not get these types of results from the first blocks, a CRPS-skilled physician usually stops there. It depends on how long you have had CRPS, how far out from the initial injury you are (they work best within the first 6-9 months but definitely within the first 12 months is key). </div>
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If you have not gotten any relief from the blocks, from any of them, if you showed little or no response (warmth in the extremity , either hand or foot), and very little pain relief from them, and yet the Dr is still doing them, 3, 4, 5 blocks down the road, start questioning him. Why are we still doing them???</div>
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Again, look at the article on SMP and IMP here.</div>
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Remember that your Doctor is part of <i>your</i> healthcare team and <i>you</i> are the captain. It is ok for you to question any play call. If you don't understand something, <b>ASK!</b> Not sure why a treatment is being done? Ask! Not sure why a particular medication is being prescribed or what it is supposed to do? Ask! Not sure why the blocks aren't working and/or why we are still doing more? Ask! Not sure what will happen next in the treatment plan if this step doesn't work? Ask! </div>
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If your current Doctor doesn't like to discuss these things with you, believes he doesn't <i>need</i> to, then you need to replace that particular player on your team and find another Doctor. There are plenty of amazing Doctors out there who are team players. You might be surprised how many there are who are willing to work with you, who are actually eager to have a patient who is interested in being a part of the treatment plan. Even if they are not currently the most educated in the disease don't let that stop you, they might be willing to learn. Some of the best Drs I have ever had over the last four decades battling this disease have been the ones who did On-The-Job-Training. They did not mind my bringing in information from the internet as long as it was from a reputable source, talking with me about the disease, our plan to battle it, and I truly felt a partner in it. It makes a huge difference in how you approach it. </div>
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<b>3) How does a block actually work? What is entailed in one? </b></div>
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<b>Answer - There is a good link here</b> that illustrates a <b><a href="http://www.spine-health.com/video/lumbar-sympathetic-block-video" target="_blank">lumbar sympathetic block</a> </b>from Spine Universe. It is an excellent website and has wonderful information on a wide variety of topics, especially injections. This gives you a good idea of how blocks work. </div>
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You can visit one of their other pages if you want to get an overall view of a <a href="http://www.spine-health.com/treatment/injections" target="_blank">vast variety of INJECTIONS</a> including some of the other types that would be given to CRPS patients. </div>
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Hope some of this information was helpful to you. We know that dealing with CRPS can be very difficult at the least but confusing at the most. The American RSDHope website was designed to try and help patients, loved ones, and medical professionals steer through the maze of this disease and not only better understand it but also better understand the patients who live with it 24/7.</div>
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Peace and freedom from pain, it is all we seek.</div>
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Keith - <i>38 year systemic CRPS survivor</i></div>
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<a href="http://www.rsdhope.org/" target="_blank">American RSDHope</a></div>
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<i><span style="font-size: x-small;">I am not a medical professional of any kind, just a fellow patient and the information I share is not intended to replace any that your Dr has given you. Do not stop or start any treatment or medication that your Dr has given you or started you on without first consulting with your Physician. </span></i></div>
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Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com1tag:blogger.com,1999:blog-6472777117035808194.post-46765972633295021262012-08-26T14:07:00.002-04:002012-08-26T14:07:54.433-04:00Pain Scales - Useful Tools or just Tools? Needs to be updated. I always chuckle when i meet with a new Doctor and they ask me what my pain level is today on a scale of 1 - 10. Seriously?<br />
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Ok, Which Pain? CRPS pain? Fibro pain? Back pain? Eye pain?<br />
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And you don't mean ALL the symptoms correct? Not the individual symptoms like exhaustion, fatigue (very different things, ask anyone with fibromyalgia or CFIDS), burning pain, allodynia, crushing, aching, squeezing, insomnia, etc. right?<br />
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Oh, and which pain scale? The pain scale for 1- the "normals", 2 - the people in acute pain, or 3 - the people in chronic pain?<br />
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And compared to who? You haven't seen me before. How do you know what my 7 is like, or my 8?<br />
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Is my 7 the same as Diane's? Or is Karen's 9 the same as Maxwell's 10 perhaps? They say that women can handle pain better than men. Is my 9 today of more importance than it might be three weeks from now after you started me on a new medication? But what if in three weeks the weather is different, or there is construction outside of my house all week, or a neighbor moved in with a barking dog, or I stubbed my toe the night before and am in a flare?<br />
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Herein lie the many problems associated with pain scales and yet you see them peppered throughout all sorts of medical studies, especially ones having to do with pain.<br />
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Simple pain scales, the 1-10 deals are archaic. They need to be updated, adjusted, modified for today's patient and for today's medical professional. It would help not only your pain management physician but also your physical therapist, psychiatrist, and pretty much anyone dealing with your pain; attorney, WC, SSD, etc. Especially if there was a single, across the board Chronic Pain Scale that everyone agreed on that addressed all aspects of a patients pain and not just a simple number.<br />
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I understand that there would still be some variations based on Drs and patients individual perceptions and possibly even some regional variations but it would be a huge improvement on what we have now.<br />
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There are Pain Conferences that occur usually ever year where pain management physicians gather and perhaps this issue could be addressed there?<br />
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What would you like to see included on a new Chronic Pain Scale? What things should your Dr ask you when inquiring about your pain? A typical chronic pain patient?<br />
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You will have to do your part as well. That may mean keeping better track of your symptoms and pain levels in between visits.<br />
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Average Pain over the last month?<br />
Worst level during that time? Best level during that time?<br />
What symptoms should be included? Aching? Crushing? Throbbing? Spasms? Shooting? Electrical feeling? Difficulty walking/standing/ Difficulty falling/staying asleep?<br />
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What about a picture?<br />
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One of the best Drs I ever had, had a wonderful pain chart and part of it had a series of faces. Picture a smiley face gradually changing to a very sad, painful face. Just as you filled in each of the other items; 1-10 rating of burning, aching, crushing, etc. you circled which of the five faces best fit your pain today. He also had on there two drawings of the human body; one facing front and one facing back. You had to fill in where you pain was, and if you liked you could use symbols. For instance I used x's for my CRPS pain and -- for my fibro pain, and then where my pain was worse I made it the darkest.<br />
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I am not saying this has to be the template, just an idea I am throwing out there as a possibility and to say that you can think outside the box.<br />
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So what do ya'll think?<br />
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<a href="mailto:keeths@mac.com" target="_blank">Send your suggestions to me</a> and I will put them in a future post here!<br />
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Peace, Keith<br />
<a href="http://www.rsdhope.org/" target="_blank">American RSDHope</a><br />
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<span style="font-weight: normal;"><span style="font-size: x-small;"><i>Want your own jpeg of the ribbon for your Facebook page or website?<br />Or even to add to your daily emails? <a href="http://www.rsdhope.org/crps-awareness.html" target="_blank">Contact American RSDHope here!</a></i></span></span></h4>
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<br />Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-17494322827340607092012-08-06T18:37:00.004-04:002012-08-06T18:37:27.388-04:00What was your week like? As a CRPS Patient like? Must be nice to sit around and do nothing all day huh? Argggggghhhh Sound familiar?argggggggggg<br />
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Ok, this has been an interesting week.<br />
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Actually it has been an interesting summer. We spent most of it working with some amazing kids, tutoring them in reading. We signed on to this program as tutors, thinking we were going to be helping the people running the program. Instead, with the help of two other wonderful adults we ended up <i>running</i> the program, the four adult volunteers. Thank God for those two other adults! One of them was a professor of a nearby community college and he did a lot, knew most of the kids, and was such a nice guy. Think we made a real friend there. You never know what life will bring. The other volunteer was used to volunteering with Mission trips with her church so this was something new for her. The kids loved her, she was very sweet and even though she felt out of her depth, she was very effective with the kids she worked with.<br />
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The kids were so much fun. There is nothing so exciting as seeing the lights click in a child's eyes when it all starts making sense, when they see an adult tell them that anything is possible if they work hard, that they <i>are </i>smart enough. So many of them are told the opposite, a lot. Mostly at home. The one place where it should never be said.<br />
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We tried to give them two pieces of advice.<br />
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1) Knowledge is Power. If you learn to read, what you learn can never be taken away from you. People can take away your house, your job, your money, even your healthy can be taken from you. But they can never take away what you know.<br />
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2) You can accomplish <i>anything</i>. Don't let anyone tell you that you are <i>less</i> than you are.<br />
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Ok, well. That was our summer anyway. It was more stressful than we anticipated but in the end, it was about the kids and the last day of class we had them write a story of their own. Their own book. Anything they wanted. Started our rough. Not sure what to write. These were 2nd-6th graders after all and no one ever asked them to do such a thing before, no one was ever that interested in what they had to share.<br />
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But by the end of the hour we had stories ranging from a newly designed solar panel to make cars more efficient, to retail stores that would enable the owners to be successful enough to buy monster trucks to play with on the weekend, to one student who was going to build a series of underground houses, and much more. Like I said, amazing kids.<br />
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I have mentioned it here before I think and most certainly on the <a href="http://www.rsdhope.org/" target="_blank">RSDHope website </a> volunteer <i>somewhere</i>, anywhere, even if it is only for a few hours. It will help you, help others, and maybe change someone's life!<br />
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This reading program was only a little over an 90 minutes a day a few days a week. Even if it was a bad pain week, it was doable. And when you see what some of these kids deal with on a daily basis, you think, wow, they put up with a lot, and made it here just to try and get help to read. I can make it here for a short time to help them.<br />
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Ok. How did I get started with that?<br />
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Let me finish this tomorrow. I want to do a post on nerve blocks. It is important but I need to rest for a bit. I promise I will finish it.<br />
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Ok, it is now tomorrow.<br />
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Ahh, the magic of the internet. I bet you didn't even notice I was gone!<br />
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One of the problems, (yes there are more than one), with this disease called CRPS, or maybe it is the Fibromyalgia, or maybe it's the CFIDS, or, wait. Let's just go with the CRPS. One of the problems is it is simply exhausting. Just <i><b>being</b></i> in chronic pain 24/7 drains you. It saps the strength right out of you. When you add in the fact that <i><b>because of</b></i> the disease and/or its' side effects <i><b>and</b></i> the medications you take for it <i><b>and their</b></i> side effects the chance of getting any kind of quality or quantity sleep is out of the question for most of us.<br />
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Now throw in the physical therapy and exercise that a CRPS/chronic pain patient must do<i> every day</i> simply to stay at the <i>same level where they currently are right now</i>, I am not talking about doing extra PT or exercise to improve your condition, but rather the things we must do day in, day out just to maintain; add that in and you get even more tired.<br />
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Now for good measure throw in a few extracurricular activities. Nothing spectacular like climbing Mount Everest or bungee jumping or leaping out of an airplane or babysitting pre-schoolers. Let's not get crazy here. Maybe a movie with friends, church on Sunday, perhaps volunteering an hour a week a few weeks a month. Ok, now how tired are you?<br />
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Not done yet.<br />
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You still have Drs appointments, usually one or two a month. Calls to your Doctor, maybe one to your insurance company as well to straighten out some problem or another. Toss in two trips to the pharmacist, maybe three trips to the grocery store as well.<br />
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Just a reminder for all the "<i>normals"</i> out there. Love that word, "<i>normals</i>". Most, not all, but most CRPS patients suffer from<b><a href="http://www.rsdhope.org/crps-symptoms.html" target="_blank"> allodynia and other symptoms</a></b>. The simple medical definition of Allodynia is pain from things/stimuli which do not normally produce a painful reaction. It is an extreme hypersensitivity. What are some examples of things that can cause pain to us that would not normally cause pain?<br />
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wind - noise - change in temperature (especially cold) - ice - change in barometric pressure - touch (can be touch of a person, clothing on our skin, even our own hand touching another part of our body, sudden, surprise, light touches are almost always worse than firm touches we know are coming), vibration, water temperature (again, warm is much better than cold)<br />
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These are just some of many examples. Any CRPS patient can give you many, many more examples. Some patients may not even realize that this is part of the disease!<br />
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Then you add in the pain to all of this and you get an even better idea of how exhausting it can be simply to try and get through the week, month as a CRPS patient, or chronic pain patient.<br />
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What is the pain of CRPS like? Funny you should ask. I just happen to have aa link to an article that discusses just that! <a href="http://www.rsdhope.org/what-does-crps-feel-like.html" target="_blank">What does CRPS feel like? </a><br />
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The reason I decided to write this topic this week was that I have heard from a number of patients these past few months, some who were <i><b>very desperate</b></i>, whose loved ones felt that they were either playing the sympathy card, over-emphasizing their pain, over-acting in an effort to gain sympathy from the rest of the family; or from loved ones or family members , or even friends who told them that, and <i>I quote here</i> because the quote is almost always the same, <b>"It must be nice to sit around all day and play video games. I wish I was on Disability!"</b><br />
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Now I know how these patients responded. Mostly with tears. They were heartbroken, that their loved ones, parents, siblings, and in two cases, husbands, felt this way. That they were simply sitting around enjoying being on disability, having this "little disease" so they could play video games.<br />
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I also know <i>how I responded</i> when I got these letters. I cannot repeat the words here that went through my head or came out of my mouth and it was fortunate that I was not present, <i><b>live</b></i>, in the room when these people said these things. As angry as I was, <i>am</i>, it also broke my heart for those patients, knowing the agony they endured, endure daily, and yet their very own loved ones still doubted their veracity; still doubted their suffering, still did not understand the agony of their everyday lives. How then would they be able to help them recover and move forward?<br />
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How do get across to these people what it is like to have this monster inside of you, have <a href="http://www.rsdhope.org/crps-symptoms.html" target="_blank">all of these strange and disturbing and bizarre symptoms </a> going on at the same time and <b><u>finally </u></b>learn it is actually <b>ONE</b> disease, <b>finally</b> get the <b>correct diagnosis</b>, <i><b>if</b> </i>you are lucky after only 3, 5, or 8 Doctors and then <b><i>still</i></b> have your loved ones not believe you!<br />
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So folks, what do I tell these patients? How do they convince their loved ones that life on SSD is not all peaches and cream and X-Box? That it is more than a full-time job to have a chronic illness, as described above; there is more than enough to keep you busy every day just to stay even with the disease and not lose any ground! That the pain we live with every minute of every day would probably turn that same person who thinks it is a cakewalk into a screaming, crying, help-me-please, huddled-in-a-corner mess inside of ten minutes?<br />
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Fortunately for them, we would never want our loved ones to ever truly know the extent of the agony we suffer, unendingly. It would break their hearts if they were able to actually plug-in to our bodies and feel it, even for a minute. So as much as we think "If only there was a way for my "Dr", Husband", "Parent", "WC Attorney", etc. , to be plugged into my pain, just for a few minutes to see what it was like, the reality is we do not want anyone else to feel what we feel.<br />
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But there has to be some way, doesn't there? Let's figure it out. Let me know your suggestions.<br />
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<a href="mailto:keeths@mac.com" target="_blank">send them to me!</a><br />
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I will post the best answers in an upcoming post here.<br />
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In the meantime, please folks. Let us all just try and help each other. enough with the hate. Time for healing. Too many boundaries everywhere, for far too long. <br />
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Peace and freedom from pain, they are all we seek,<br />
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Keith Orsini<br />
<a href="http://www.rsdhope.org/" target="_blank">American RSDHope</a><br />
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PS - If you have not gotten your copy of the National CRPS Awareness Ribbon for your Facebook Page or website, personal or business! Help spread awareness!!! Send me an email, at the address above. We also have a smaller size of the ribbon for those who want to include it in the emails they send out to people all day long! We do not charge for this jpeg file of course. It is copyright protected though. But if you have something special you want to do with it, let us know. We might say yes and send you a permission form! Someone recently added it to their body as a tattoo! Another is going to use it for a fundraiser!<br />
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<i>We will also soon have ceramic ribbons that we can share at cost, it will be the national ribbon, they look amazing! Get some for your support group, Facebook group, fundraiser, school, family, whatever. You can even get the awareness ribbon for your car! nearly ten thousand cars across the country are already showing their awareness for CRPS, and thousands of websites, Facebook pages, and emails are now starting to zip across the web with the ribbon on them. Join the wave! </i><br />
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Send an email to <a href="mailto:keeths@mac.com" target="_blank">RSDHope</a> and ask for the ribbon in the large size for the website or Facebook page or the smaller size for email, or both!<br />
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<br />Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-14678211677381543012012-06-23T07:30:00.001-04:002012-06-23T07:30:06.885-04:00CRPS and our other Pains and/or diseases ; does it affect them?<br />
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Someone once asked me if CRPS pain is worse when you have other illnesses and/or pain. </div>
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In other words, for me, I have Fibromyalgia, common for CRPS patients, CFIDs (Chronic Fatigue Immune Deficiency Syndrome), DDD (Degenerative Disc Disease), FBS (Failed Back Syndrome), some eye problems; well, let's stop there. I know many of you have something in addition to your CRPS as well, maybe not as many things as I have but remember, I have had a long time to collect things along the way ;-D I have friends who have had CRPS even longer than the nearly four decades that I have who have a few more issues than me so I feel fortunate! (that does not mean it happens to everyone or even most everyone so don't start panicking folks).</div>
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So, do these other disorders/issues make my CRPS worse? When these other disorders "act up" does that make my CRPS worse? How do my Drs treat these other disorders and the CRPS at the same time?</div>
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Again, I can only go by my own case here and how I and my Drs deal with it. Each case is different.</div>
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My CRPS is full body or systemic. I was fortunate in that I had about 35, if I remember correctly, HBO treatments in 2008. They went very well and I am still doing fairly well because of them. I don't have the 85% relief today I had right afterwards but there is still a fair amount of relief of the CRPS pain. I don't take anywhere near the amount of pain medication I did many years ago for the CRPS. It also helps that in 2003 and in 2007 I had low-dose ketamine infusions. Before that first one I was spending most of my time in a wheelchair and on so many medications I barely knew what time it was and I was so pale I looked like I was dead half of the time. It is amazing how few medications I am on today, especially given the things I still deal with, pain and disease-wise. I am thrilled. </div>
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I was on <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004942/" target="_blank">Opana </a>ER and doing fairly well until they changed the formulation in March of this year, <i>similar to what they did to Oxycontin ER in the fall of 2010</i>. They changed the formulation because some people were abusing the drug, breaking it down, snorting it, whatever. Within days it was on the internet how to do the same thing to the new version so I am not sure it was very effective but the coating they put on the new versions seemed to make a lot of people sick to their stomach and/or not get as effective a dose before it left their bodies. Bottom line, many pain patients went in search of something else, <i>again.</i> </div>
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I switched to the <a href="http://www.drugs.com/cdi/fentanyl-patch.html" target="_blank">fentanyl patch</a>. Some people like it, others have a problem with the adhesive itching too much. I admit, it can be itchy. It took me a couple of months to get over that part of it but the trade off between the side effects of the pill opiod and the patch, which enters your blood stream directly instead of passing through your stomach and intestines and all the side effects <i>that</i> can cause. </div>
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Bottom line, since I am not sure why I got off on this tangent, is the patch has been great! I put it on, lasts for three days! No having to remember to take the pills, no constipation from the opiate pills (a side effect all pain patients know about), none of those weird side effects that can sometimes take place with the other pain meds. For me anyway, it is much better that either the opana or the oxycontin. Everyone is different of course and I am no medical professional, just a fellow patient. The fentanyl patch is an opiod-agonist, for many patients these types of opiods seem to work more effectively than others. </div>
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<i>- what is an opiod agonist? <span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: 13px;">An opiate agonist gives the user the same feeling as would be experienced by an endorphin, which is a natural compound. The receptors in the brain that feel effects from opiates receive the opiate agonist and feel an opioid effect, even though one isn't really happening.</span></i></div>
<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif; font-size: 13px;"><span style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; vertical-align: baseline;"><br />Read more: <a href="http://www.ehow.com/facts_5679207_opiate-agonist_.html#ixzz1ycC2io00" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #003399; cursor: pointer; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: none; vertical-align: baseline;">What Is an Opiate Agonist? | eHow.com</a> <a href="http://www.ehow.com/facts_5679207_opiate-agonist_.html#ixzz1ycC2io00" style="border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; color: #003399; cursor: pointer; font-family: inherit; font-size: 13px; font-style: inherit; font-weight: inherit; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: none; vertical-align: baseline;">http://www.ehow.com/facts_5679207_opiate-agonist_.html#ixzz1ycC2io00</a></span></span><div style="margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px;">
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Ok, so how does my CRPS affect my other diseases?</div>
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Well for many years the CRPS pain was so overwhelming it well, simply overwhelmed the other pains. I had issues because of the other diseases, the problem walking, the disabilities due to the back, the fatigue and exhaustion due to the Fibro and CFIDS, dry mouth, eyes, etc. due to the CFIDs, the severe back pain from the DDD and the FBS, etc. but the pain from the other diseases was often masked by the CRPS. As any of you with the disease can attest, its pain is all-consuming.</div>
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But many times, when one of those diseases decides to reach out and bite you, you feel it. If one of them has a flare, you know it. Just like when the CRPS has a flare, you know it. </div>
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I have a lousy back, ever since my auto accident back in 1985; broke my back, ended up with surgery, spinal fusion, laminectomy, etc. Anyway, when it decides I have done too much it simply tells me . But not until the NEXT day. Pretty inconvenient! It can also then have a domino effect on the CRPS, even if the CRPS has been fairly quiet, meaning only a 5 or a 7 instead of a 8 or 9. </div>
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Anyone who has had spinal fusion, severe back trauma, back surgery, anything along these lines where you spent time under the knife for your back, months in rehab probably learning to walk again (not as easy as it sounds folks) will understand what I am about to say.</div>
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"Please, if you have not had any of the above types of surgeries and accompanying rehabilitative physical therapy, if you know about our situation and you see that we are having trouble with our back, (maybe we are using a cane suddenly, or you heard we have been forced into bed-rest for a few days, or you see us having extreme difficulty standing or getting up), where we don't normally have these issues; please don't regale us with stories of how you also have back problems because;</div>
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1) Your mattress isn't what it used to be.</div>
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2) You over-did it with the kids rough-housing last night.</div>
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3) You spent a little too much time playing golf over the weekend.</div>
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4) Once in a while your old football injury kicks up.</div>
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5) Your wife is pregnant and you are experiencing "sympathy pains".</div>
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You might think you are commiserating but in reality you are <i><b>minimizing our pain</b></i>, making light of a situation we are already having difficulty dealing with, and especially because most likely <i><b>our back pain</b></i> has escalated our other chronic pain issues such as CRPS. </div>
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I might also suggest you take a step back because some people might want to slap you for some of those answers listed above ;-D Not me of course, but some people might. Maybe even your wife if she hears you say number 5!</div>
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So two weeks ago I was doing some volunteer work at a food shelter. Nothing major. I try and am careful not to do heavy lifting, twisting, bending, etc., the behaviors I know will lead to making my back scream and/or my CRPS get overly upset. I also keep my time there restricted to short bursts of an hour or so. </div>
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I know it may sound weird to many people but the people I volunteer with know my situation (the chronic pain issues), and know I have to be careful with regards to how long I spend there and what exactly I do/don't do. They keep an eye on me! Sometimes I forget and try to act normal you know, like we all do; do normal things and forget that we have these diseases. Unfortunately, the next day or even later the same day the disease comes back and gives us a painful reminder that it is there and says, HEY! I didn't like what you did back there! I saw that! You lifted three cans instead of two cans. Uh Uh Uh, no no. Just for that, here is a little extra pain for ya!</div>
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Normally it is not an issue because I have had CRPS for almost 4 decades now, my back surgery was way back in 87, my fibro started, well, it has been many years for all of this stuff and I have grown accustomed to what I can and can't do. But typically once a year or year and a half, I mess up. I end up over-doing somehow and a day later I end up with back pain so severe I have difficulty even walking. After two days of this type of pain I can tell if it will either;</div>
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1) Go away with rest, heat, and soaking in the tub, or</div>
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2) Require an epidural injection of the lumbar region.</div>
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This time it was an injection. I knew it after one day. It took longer to get simply because my Pain Dr was on vacation. Fortunately he was back in town for a few days and squeezed me in a week later, gave me the shot on Monday, and I am slowly recovering. It takes a while, a week usually even though I am walking again later that day. The back pain lasts a week or so simply because of the impact of the whole situation on the CRPS and the overall back. </div>
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When you have one area of the back that is weak, for me it is a herniated disc just above the site of the surgery and too much or the wrong kind of activity puts pressure (or compression) on the nerve where it exits the disc space, which sends pain radiating down the back (which is why they call it <a href="http://www.medicinenet.com/radiculopathy/article.htm" target="_blank">radiculopathy </a>) </div>
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Anyway, long story. Many of you know all about this so I don't need to explain.</div>
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Bottom line is that these types of things; back pain, disc herniations, <a href="http://www.rsdhope.org/fibromyalgia-articles.html" target="_blank">fibromyalgia</a> flares, flares of other diseases like <a href="http://www.cfids.org/" target="_blank">CFIDS</a>, or whatever you have to deal with, all of these things, when they flare up they can make your CRPS pain/symptoms flare up as well. </div>
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This can cause many patients great worry. They may feel as if the CRPS is spreading (because they may feel symptoms in new places), or they may feel their disease is worsening, but typically the CRPS will calm itself back down shortly after the other disease calms itself back down. It may take a little longer just because CRPS affects more of the body and the bodies systems but usually it happens. It takes you a while to learn how your body reacts to all of these things going on, so you have to pay a great deal of attention to it.</div>
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I tell people all the time, now that you have CRPS you have a new full-time job. It isn't a joke. Having a chronic illness is a full time job. Between managing the medications, Drs appts., insurance companies, learning the disease/medications, understanding and researching various treatments, learning how the disease will affect you long-term, not to mention juggling the financial aspects of a chronic illness and how the whole thing affects your family and the emotional counseling involved there. How many hats is that so far? </div>
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So yes, I would say that CRPS does have an effect on other pains and illnesses ;-D</div>
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Peace, Keith Orsini</div>
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<a href="http://www.rsdhope.org/" target="_blank">American RSDHope</a></div>
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<br />Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-89093423561563547182012-06-15T11:03:00.000-04:002012-12-30T06:54:33.808-05:00CRPS RSD Awareness Ribbon , which is the right color?I have a lot of patients writing to me asking me about an awareness ribbon for CRPS / RSD. They want to know which is the official one, official color, etc.<br />
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All I can tell you is American RSDHope came out with a National Awareness Ribbon, which you can see on the cover of our website, <a href="http://www.rsdhope.org/" target="_blank">American RSDHope</a>, back in the 90's. Of course it said RSD Awareness back then, that was before everyone made the changeover to CRPS Type I and II. When the official changeover occurred , we made that changeover as well. </div>
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Before the RSD/CRPS Community chose the colors, <b><i>red/orange combination with flames representing the burning pain of CRPS,</i></b> we talked with many, many patients individually and in support groups around the country about the choices available, both on-line and the ones that met in person. We even talked about it at one of the conferences we held. It has been many years now but we even held votes in some of the larger groups and on-line. That was some fifteen years or so ago so I don't remember the exact details, some of you who were around the internet and the online groups may be able to refresh my memory on the exact dates but it took place over many, many months. We went back and forth, coming up with exactly the right color choice. Our biggest concern was of course, not wanting to choose a color that was already being used by other causes.<br />
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Red was discussed, as was purple and orange. But these colors already were taken by many causes. Take orange for instance. Orange was being used by many causes such as Cancer Awareness, Agent Orange, Multiple Sclerosis, Feral Animal Awareness, Hunger Awareness, and quite a few more, and so many of these were well established causes. If you google Orange Awareness Ribbon it will probably bring up a page or more of causes associated with it. We didn't want to get confused with them, or more importantly, simply lost among them all. <br />
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We also wanted a color that brought the disease to mind when you saw it and orange didn't really do it, neither did purple, or red. It kept coming back to some sort of combination of red/orange. So we had a design drawn up using both colors AND flames! It was perfect and was a big hit! We added the website to the ribbon so when people saw it they would not only see what it was about but be able to go somewhere for more information. In addition, we are able to protect it so it could not be used and abused by who knows who, or duplicated all over the place and end up like so many of the other ribbons out there. After all of these years, we have managed to keep it from being duplicated and at the same time it is on thousands of vehicles all over the United States, on thousands of websites, Facebook pages, and by November of 2012 it will be available for people to use in their daily emails if they wish.<br />
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Anyone who would like a copy of the jpeg file to use for their website, Facebook page, twitter account, and soon, Emails, can get it for free just by <a href="mailto:RSDHope@mac.com" target="_blank">CONTACTING US VIA EMAIL</a>. Support groups can put it on their website, use it at their meetings or conferences, etc., just send us an email and let us know and we can send it right out to you! All we ask is that you don't try to make any money off of the image, the ribbon.<br />
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The only items American RSDHope has used it on have been sold either at cost, or at cost plus shipping and we have also allowed other groups/individuals to use the ribbon for fundraisers, conferences, or unique items as long as the money went towards CRPS research.</div>
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We updated it a couple of years ago when we updated the website to include CRPS so it now says CRPS/RSD, instead of the old designation of RSDS. </div>
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If you don't have a copy of the jpeg file for your website, Facebook page, or would like to add it when you send your email, etc.; <a href="mailto:RSDHope@mac.com" target="_blank">CLICK HERE</a> and I can pop it back to you. It is a very clear file and you can even re-size it if you need to. </div>
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So if you would like a copy, just go to our website, click on the contact us section, and ask for a copy of the ribbon to be emailed to you. Or you can<a href="http://www.rsdhope.org/crps-national-crps-awareness-ribbon.html" target="_blank"> CLICK HERE AND LEARN MORE.</a><br />
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If you do pop over to the website to get your own copy of the ribbon, why not take a few minutes and share a little bit about yourself with us? How long have you had CRPS? How did you get it? What have you done that has helped you or conversely, have you tried any treatments that made it worse? This type of information helps us learn more about the disease and aids us in helping your fellow patients. We do not share your personal information and/or emails with anyone else unless you have given us express permission to do so.<br />
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In the meantime, we have a <a href="http://www.rsdhope.org/rsdhope-mentor-program.html" target="_blank">MENTOR PROGRAM</a> if you would like to help other patients.<br />
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Are you a teen with CRPS? If so, we have a very active <a href="http://www.rsdhope.org/rsdhope-teen-corner.html" target="_blank">RSDHOPE TEEN CORNER</a> for those who are 14-21 and have CRPS.<br />
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We are always looking for CRPS patients to have on file when patients call in seeking others in their area to connect with, to chat with, meet for coffee, share local info on Drs., maybe even start your own local support group! <br />
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We ONLY give out your information if you have told us it is ok ahead of time and usually we send you the other person's contact info and let you know they are seeking people, and leave it up to you to contact if you want to.<br />
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We also have a <a href="http://www.rsdhope.org/groups.html" target="_blank">LOCAL SUPPORT GROUP section </a>on the site and all sorts of links in the <a href="http://www.rsdhope.org/links.html" target="_blank">LINKS SECTION (click here and then select from the drop-down menu)</a><br />
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The national CRPS awareness ribbon is already on hundreds and hundreds of websites all over the web, stopped counting a few years back. Let's keep adding them until it is everywhere! </div>
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While you are on the website, check it out! Especially if you have not been by there since we gave it a new look earlier this year and we have been improving it each month since. It is an ongoing project and I think if I had one or two full-time web-design volunteers I could keep them busy with projects!</div>
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Keith </div>
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Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-9252899747816853332012-05-22T23:58:00.001-04:002012-05-22T23:58:30.402-04:00Paula Abdul - again talks about CRPSOk, so yesterday Paula Abdul once again took to the airwaves to talk about our disease. <div>
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This time it was to talk about a product she is now a spokeswoman for, something called Fembody. </div>
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Those of you who have been around our disease for a while might remember she came out a few years back to discuss her weird and strange behavior on American Idull, she appeared very distracted and couldn't stop giggling, for instance. We know the distracted part could have been what many of us were feeling, too many years of the show, but she told Dr Oz that no, it was actually all part of this disease, our disease, CRPS, and that this stuff, fembody, and her diet high in the greens, is helping her a great deal. </div>
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I have included a link that discusses the show in more detail as well as this new product that she is now endorsing. Before all of you go out and buy some, looking for an immediate cure though, remember to take such endorsements with a grain of salt. She is getting paid by this company, more than likely although I do not know the exact details, AND what works for one person does not always work for another. But what is good here is the info on all the greens. Greens in a diet for a CRPS patient "is a good thing". Here is the<a href="http://www.dr-oz-reviews.net/supplement/1761/dr-oz-paula-abdul-forever-greens-recipe-fembody-activator/" target="_blank"> link to the Dr Oz Show and info</a></div>
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I am glad she is in less pain, no one should suffer from this horrible disease and any light she can shed on this disease, any brightness she can bring to our corner of the world is most welcome.</div>
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Be well everyone, </div>
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peace, Keith </div>
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</div>Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-1352645543646183272012-05-05T00:14:00.001-04:002012-05-05T00:14:31.333-04:00OPANA CHANGES FORMULATION - SAGA CONTINUES<h2>
Ahhh, Opana ER, I hardly knew ya!</h2>
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For many of you chronic pain patients, especially CRPS patients, you know all too well what happens when a drug company changes their formulation on a tried and true pain medication.<br />
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<span class="Apple-style-span" style="background-color: blue;"><span class="Apple-style-span" style="color: blue;">1) </span></span>The chronic pain patients who have been having great success on that medication, and who were NOT abusing it, suddenly find that the new version does not work as well for them;<br />
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and/or<br />
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<span class="Apple-style-span" style="background-color: blue;">2)</span> The new version has some type of coating, which was the reason for the new formulation in the first place, that seems to make everyone who takes it sick to their stomach because of the stuff it is made of;<br />
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and/or<br />
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<span class="Apple-style-span" style="background-color: blue;">3)</span> Because this new coating is not completely breaking down in your stomach and/or intestines before it passes through and out of your body you do not get 100% use out of the medications pain-relieving properties.<br />
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Therefore, you do not get the pain relief you were getting on the old version of the medication, your stomach develops various problems, AND your pain issue (whether it is CRPS or fibro or whatever, starts to spike. Sometimes people forget that the <a href="http://www.vivo.colostate.edu/hbooks/pathphys/digestion/basics/gi_nervous.html" target="_blank">Digestive System is endowed with its' own local Nervous System </a>and when it gets riled up it can lead to all sorts of pain spikes, especially when you have a disease like CRPS. In fact, some children can get what they call <a href="http://www.hindawi.com/journals/grp/2009/701019/" target="_blank">CVS or cyclic vomiting syndrome</a> and it involves migraines and the gut.<br />
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Don't think you are alone in this. It happened back in 2010 with Oxycontin when they changed that medication ( <a href="http://www.prescriptiondrug-info.com/Discuss/Will-Oxycontin-Be-Changed-Back-To-Original-Formula-213251.htm" target="_blank">Oxycontin Re-formulation - not well received</a> ) and now it has happened again with another very successful medication for treating chronic pain, Opana. You can read many blogs/lists/websites about patients stories on the net, <a href="http://www.prescriptiondrug-info.com/Discuss/New-Opana-Is-Out-Now-March-15-228657.htm" target="_blank">here is just one I have followed </a><br />
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<u><span class="Apple-style-span" style="font-size: large;">Unfortunately the purpose behind these re-formulations was supposedly to deter abuse.</span></u><br />
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Mainly by people who were getting it from the street, they were doing everything from snorting it to breaking it down into smaller sizes, and probably a hundred other things. Some were doing it to get high, some were doing it because they needed the drug for pain relief and couldn't get it legitimately.<br />
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The makers of these drugs decided they would come up with ways to coat the medications so no one would be able to "break-down" the drug without destroying it in the process. <br />
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Well <i><b>in both of these cases they severely underestimated the people they were up against and their desire for the drug</b></i>, and apparently the financial demand for it. In both cases within days the internet was filled with instructions on how to break it down.<br />
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I remember going on-line after the new Opana was introduced, I wanted to see what, if any, people had to say about it. I was shocked to see the posts by people who were already sharing ways to break down the coating. Those posts were mixed in with posts from legitimate patients who were really upset because once again, their pain relief was going away, the stomach pains were back, and another short-lived attempt at pain-relief was yanked from their hands by short-sighted people.<br />
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I personally had been on Opana since the change to Oxycontin. I was one of the many, many legitimate patients who had done well on Oxycontin only to have to change to something else when the change came to Oxy. I, like many, switched to Opana. I was thrilled because it worked even better than Oxy. There aren't a lot of options when it comes to pain relief for CRPS patients; opiod agonists are one of the best. Oxy was one of the most popular, then most had to switch to Opana.<br />
<br />
Then in March of this year Opana switched to a new formulation and bang. It happened again. Within days the abusers had figured out how to beat the system, get around the new tamper-proof and crush-proof coating, and they were back to snorting it, and doing whatever else they do to them once they are in powder form. While those of us who take them legitimately were left holding the bag, and for some people it was a very expensive bag depending on your co-pay.<br />
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So .... it is back to searching for a new source of pain relief for many of us, and looks like after spending all that money on <b><i>re-tooling a successful product</i></b>, Endo Pharmaceuticals will be losing quite a lot of customers. What is that old expression? If it ain't broke, don't fix it.<br />
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Some will go to another opiate, many will try the patch. Some will even try the Opana IR, or instant release version (the re-tooled opana was the ER or extended release).<br />
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For me, I went to the Fentanyl patch. I tried the new version of Opana for five weeks. All it did was put me into a very bad CRPS flare, very bad. I have been on the patch for a few weeks now and it has started to calm down my flare and I am doing better. I should be back to "my version of normal" in another week.<br />
<br />
The good thing about the patch is that it has three levels, 25 mg, 50 mg, and 75 mg so I can even get more pain relief than I had with the Opana, PLUS I have already noticed the best thing about the patch; since there is no internal opiate being taken, I have no internal side effects that come with it! Meaning no constipation! I know that may sound a little vulgar but for those of you who have had to deal with it for years like me, even with whatever remedies you have used, it is a pain in the you know what,<i> no pun intended.</i><br />
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Nor do you have the other side effects that come with taking an oral opiod, dashes of medication (where suddenly you feel a rush of the medication, it can sometimes get released that way when it is an ER), it is much steadier with the patch, and you don't feel as sleepy or dopey with the patch for some reason, even at the same level or higher of med. In addition, the medication is more effective because it is delivered directly into your bloodstream, nothing is wasted, nor do you have to wait while it is absorbed through your intestinal wall.<br />
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So I am hoping and praying that people don't find a way to abuse the patches so they don't feel the need to re-formulate them! Wish me luck.<br />
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Praying for all of you as well.<br />
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Peace to you all,<br />
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<a href="mailto:keeths@mac.com" target="_blank">Keith</a><br />
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<a href="http://www.rsdhope.org/" target="_blank">American RSDHope</a><br />
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<br />Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com1tag:blogger.com,1999:blog-6472777117035808194.post-8593166236170202702012-04-02T11:36:00.001-04:002012-04-02T11:37:14.215-04:00Opana - new formulation - Pain and other drugsOpana ER, manufactured by Endo Pharmaceuticals, changed in March of 2012.<br />
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Endo was allowed by the FDA to change the formulation of Opana ER.</div>
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According to Endo, "<span class="Apple-style-span" style="color: #666666; font-family: verdana; font-size: 14px; line-height: 21px;">"FDA's approval of this new formulation of Opana ER is an important milestone for both the Long Acting Opioid category as well as Endo's branded pharmaceutical portfolio," said Dr. Ivan Gergel, M.D., executive vice president, R&D and chief scientific officer, Endo Pharmaceuticals. "Patient safety is our top concern and addressing appropriate use of opioids is a responsibility that we take very seriously. We firmly believe this new formulation of Opana ER, coupled with our long-term commitment to awareness and education around appropriate use of opioids will benefit patients, physicians and payers." </span></div>
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<span class="Apple-style-span" style="color: #666666; font-family: verdana; font-size: 14px; line-height: 21px;">* <a href="http://www.rsdhope.org/medication-articles.html" target="_blank">See entire article</a></span></div>
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<span class="Apple-style-span" style="color: #666666; font-family: verdana;"><span class="Apple-style-span" style="font-size: 14px; line-height: 21px;">Also according to Endo, "</span></span><span class="Apple-style-span" style="color: #666666; font-family: verdana; font-size: 14px; line-height: 21px;">The new formulation, which utilizes the proprietary INTAC™ technology owned by Grunenthal, will continue to be called Opana ER with the same dosage strengths, color and packaging and similar tablet size and shape. Also, the FDA approval means that there is no significant difference in the rate and extent of absorption of the therapeutic ingredient between this new formulation and the original formulation of Opana ER."</span></div>
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<span class="Apple-style-span" style="color: #666666; font-family: verdana; font-size: 14px; line-height: 21px;"><br /></span></div>
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<span class="Apple-style-span" style="color: #666666; font-family: verdana; font-size: 14px; line-height: 21px;"><a href="http://www.rsdhope.org/medication-articles.html" target="_blank">* See entire article</a></span></div>
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Just when we get our bodies used to one set of medications, something else changes!<br />
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Keith </div>Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-61306273004970663192012-02-21T06:58:00.003-05:002012-02-21T07:25:18.160-05:00CRPS articles - new articles February 2012We just added a few new articles to the website this week in case you wanted to check them out.<div><br /></div><div>One in particular I found very interesting;</div><div><br /></div><div><a href="http://www.rsdhope.org/medical-articles1.html"><b>Neuron Memory Key to Taming Chronic Pain</b></a></div><div><br /></div><div>The subheading reads;</div><div><span class="Apple-style-span" style="color: rgb(102, 102, 102); font-family: verdana; font-size: 14px; line-height: 21px; "><em style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; position: relative; ">Study Suggests Erasing Neuronal Memories May Help Control Persistent Pain</em></span></div><div><br /></div><div>The first two paragraphs should be enough to make you want to read the entire study if you suffer from chronic pain but especially if you suffer from CRPS I think, or any type of neuropathy;</div><div><br /></div><div><span class="Apple-style-span" style="color: rgb(102, 102, 102); font-family: Helvetica, Arial, Verdana, sans-serif; ">Newswise — For some, the pain is so great that they can’t even bear to have clothes touch their skin. For others, it means that every step is a deliberate and agonizing choice. Whether the pain is caused by arthritic joints, an injury to a nerve or a disease like fibromyalgia, research now suggests there are new solutions for those who suffer from chronic pain.<br /><span style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; "></span><br /><span style="margin-top: 0px; margin-right: 0px; margin-bottom: 0px; margin-left: 0px; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 0px; "></span>A team of researchers led by McGill neuroscientist Terence Coderre, who is also affiliated with the Research Institute of the McGill University Health Centre, has found the key to understanding how memories of pain are stored in the brain. More importantly, the researchers are also able to suggest how these memories can be erased, making it possible to ease chronic pain.</span></div><div><br /></div><div>Let me know what you think!</div><div><br /></div><div>We also added back in an article we used to have on the old site, from a 2009 edition of the US News and World Report, an excellent magazine if you have never read it. It is chock full of great information and very few ads. Don't let its' slim size fool you. </div><div><br /></div><div>The reason we re-posted it was because the content is being bandied about a lot these days; the topic of addiction, dependence, and tolerance and the problem of people not understanding the differences between the three. I will also include a link to an article I wrote on the subject. </div><div><br /></div><div>Most people Do not even understand that tolerance is part of the equation and it is an important part nor do they understand the true definition of dependence. Part of this is the fault of the media for not defining it correctly and part of the fault lies with the medical community for not correcting them I believe.</div><div><br /></div><div>The article from US News and World Report is called <a href="http://www.rsdhope.org/medical-articles1.html">"Managing Your Pain, How to Use Prescription Drugs Without Becoming Addicted"</a></div><div><br /></div><div>I think that there are a great many lawmakers out there, legislators that is, and people in the media (who I doubt have ever pain in real pain or know anyone who has), who truly understand that that is possible. </div><div><br /></div><div>In <a href="http://www.rsdhope.org/addiction-dependence-or-tolerance.html"><b>ADDICTION, DEPENDENCE, AND TOLERANCE</b></a>, an article I pulled together a few years back is the following quote;</div><div><br /></div><div><span class="Apple-style-span" style="color: rgb(102, 102, 102); font-family: verdana; line-height: 19px; font-size: small; ">"Some medications used to treat pain can be addictive. Addiction is different from physical dependence or tolerance, however. In cases of physical dependence, withdrawal symptoms occur when a substance suddenly is stopped. Tolerance occurs when the initial dose of a substance loses its effectiveness over time. Addiction and physical dependence often occur together." People who take a class of drugs called opioids for a long period of time may develop tolerance and even physical dependence. This does not mean, however, that a person is addicted. In general, the chance of addiction is very small when narcotics are used under proper medical supervision." The article goes on to say, "Most people who take their pain medicine as directed by their doctor do not become addicted, even if they take the medicine for a long time."</span></div><div><br /></div><div><br /></div><div>There are some great facts in there backed up by a few very good articles in case you ever need to make the case to a Doctor or insurance company. I tried to pull together information from many different articles regarding addiction, dependence, and tolerance to help explain the differences between the three. </div><div><br /></div><div>Hope this helps!</div><div><br /></div><div>Have a great week everyone! Stay warm!</div><div><br /></div><div>Peace, Keith</div><div><br /></div><div><a href="http://www.rsdhope.org">American RSDHope</a></div>Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0tag:blogger.com,1999:blog-6472777117035808194.post-89307757093784234372012-02-09T04:58:00.003-05:002012-02-09T05:30:20.782-05:00Ice and CRPS or ICE and RSDI have been asked this question so many times that I have written about it a lot. So if you have read it here or elsewhere before, feel free to skip on over it :-D<div><br /></div><div>The question is, Is it bad to apply ice pack to the CRPS (or RSD) affected area? (or even nearby)</div><div><br /></div><div>Or, Is it bad to use the hot/cold contrast therapy in the CRPS affected area? </div><div>(hot/cold contrast therapy </div><div><br /></div><div><br /></div><div>I would definitely suggest you read our <a href="http://www.rsdhope.org/physical-therapy.html"><b>physical therapy section</b></a> of the website, especially the article on <a href="http://www.rsdhope.org/ice-and-crps.html"><b>Ice and CRPS</b></a>,</div><div><br /></div><div>one section of the article on Ice and CRPS, Dr Hooshmand states the case very well when he says;</div><div><br /></div><div> "<span class="Apple-style-span" style="color: rgb(102, 102, 102); font-family: verdana; font-size: 14px; line-height: 21px; ">On the other hand repetitive application of ice freezes and coagulates the myelin (fatty tissue insulating large nerve fibers) exactly like ice freezes and solidifies melted butter. As the ice freezes the large nerve fibers, causing freeze damage to the myelinated nerves, the patient develops sensory loss and pain due to permanent damage to the large sensory nerve fibers. </span></div><div><span class="Apple-style-span" style="color: rgb(102, 102, 102); font-family: verdana; font-size: 14px; line-height: 21px; "><br /></span></div><div><span class="Apple-style-span" style="color: rgb(102, 102, 102); font-family: verdana; font-size: 14px; line-height: 21px; ">This aggravates the RSD by adding sensory nerve pain of non-sympathetic origin to the initial thermal sensory pain of sympathetic origin. As a result, Ice provides total anesthesia and relief of pain for several minute the same way as the hand becomes numb being exposed to snowballs in the winter. However, a<i><b> few hours after the cessation of ice exposure, the pain recurs with vengeance </b></i>due to reactive enlargement of blood vessels after the constriction of blood vessels due to exposure to ice. This phenomenon causes excellent relief of pain with ice treatment<b> followed by not only aggravation of pain, but damage to the nerve fibers adding sympathetic independent pain (SIP) to the original sympathetic mediated pain (SMP)."</b></span></div><div><span class="Apple-style-span" style="color: rgb(102, 102, 102); font-family: verdana; font-size: 14px; line-height: 21px; "><br /></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px; ">If you need a refresher course on SIP and SMP (IMP as it is sometimes called) check out <a href="http://www.rsdhope.org/smp-and-imp.html"><b>this article.</b></a></span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px; "><br /></span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px; ">But pay particular attention to the words I put in bold letters in the quote above. So often I hear from patients who say, "But it feels better when I apply ice or run my hands under cold, ice-cold water for a few minutes", but they have to do it more and more often as the weeks and months roll on. And then hours later the pain is worse then ever. </span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px; "><br /></span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px; ">The reason they have to do it more often and the reason the pain is worse than ever afterwards is both the same, are both the same. That is what Dr Hooshmand is saying above. The more you do these things, the more you are breaking down the protective myelin sheath that protects the nerve. Pretty soon there is no going back, the damage is permanent and the pain is no longer SMP, or localized, but SIP, or brain centered. This is where the pain-cycle gets in that stuck position and is nearly impossible to break. It is also where it seems the disease spreads.</span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px; "><br /></span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px; ">We hear so many sad stories of patients whose use of ice precipitated their spread of their CRPS, from the one small area to not just further up that limb but also the opposite limb. It also seems to accelerate the timing of the disease through the stages if ice is used repeatedly. </span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px; "><br /></span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px; ">Remember also that ice, even very cold water/temperature, can cause the blood vessels to constrict and/or spasm. This is one of the four main symptoms of CRPS (spasms in muscles and/or blood vessels). It can be very, very painful for your extremities; toes, fingers, feet, hands, nose, etc. </span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px; "><br /></span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px; ">So please, be very cautious here. If your physical therapist insists on using ice, educate them. This is your life we are talking about, you are the boss, take control, take charge! </span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px; "><br /></span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px; ">There are other articles on the net besides the one sited above too. I just think his is the best and probably was the first!</span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px; "><br /></span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px; ">Peace,</span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px;">Keith Orsini</span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px;"><a href="http://www.rsdhope.org"><b>American RSDHope</b></a></span></span></div><div><span class="Apple-style-span" style="font-family:verdana;font-size:100%;"><span class="Apple-style-span" style="line-height: 21px;"><br /></span></span></div>Keithhttp://www.blogger.com/profile/06236861907626544779noreply@blogger.com0