Tuesday, January 20, 2015

December 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.

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.

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.

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 ;-)

I think maybe in the future I will just close off the blog and just add stories and articles directly to the website.

THE SEE-SAW LIFE OF A CRPS PATIENT

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.

If you have a loved one with CRPS the one skill you need to develop quickly is learning to adjust. Plans will change. Learn to adjust. Finances will change. Learn to adjust. Intimacy levels and habits will 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, learn to adjust.

You will 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.

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.

PAIN LEVELS

When you live 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 new CRPS Type I medication 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.

That actually goes for all chronic pain patients. We patients seek a place where our pain is at a manageable 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.

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 Tuesday.

MY PAIN LEVELS

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 typical.

- For me the average pain level in the early morning is about a 9.
- It comes down to an 8 by around 8 am.
- I try to plan most of my activities for this time period, usually between 8 am and noon or 1 pm.
- 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.

- Typically I will need to lie down in the afternoon for about four hours. I don't! ha ha, I need to 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.

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.

- Late in the afternoon and early evening my pain level generally heads back down towards 8.
- By bedtime it has risen to about a 9 again.
- 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).

- 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.
- 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.
- 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.

The quality of that sleep is not the greatest of course because I never attain REM sleep. You can read more about why that is here. 

Those of you who suffer from Fibromyalgia 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 Fibro fatigue 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.

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;

1) Get out of the house.
2) Stay mentally and emotionally involved with other people, especially if you have had to leave the workforce.
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.
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.
5) Remain physically active.
6) Keep your brain sharp and work on your memory.
7) Meet new people.
8) When you focus more on helping others you focus less on your own problems.

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.

MEDICATIONS

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.

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?

Once you find medications that work for you, that your Doctor has prescribed for you, FOLLOW THE PRESCRIPTION DIRECTIONS! If it says two a day, or one after meals, or one in the morning and two at night, do that please ;-)

If you have questions about what it says on the bottle ask your pharmacist or Doctor but don't, don't, don't take your medications until you start feeling better and then once you are feeling better STOP taking them.

Guess why you are feeling better? Because your meds are working as intended!! When you stop, your symptoms start returning, 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.

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.

That is one scenario.

Another scenario is the patient who does not take their medication at the same time every day or even every day 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.

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."

Taking your drugs this way is called "roller-coastering". Up one minute, down the next.
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.

MY MEDS?

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.

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.

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.

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.

SEE-SAW LIFE OF CHRONIC PAIN PATIENTS
or How we go back and forth

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 ;-)

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.

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.

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.

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.

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.

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.

Before that injury, I had my pain level at a manageable level. See-saw.

I will step things up here as you can see the pattern.

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.

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.

Still, the cold weather does affect me and my pain just not as much. Mild see-saw ;-) Maybe, teeter-totter!

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 American RSDHope was co-sponsoring the event with the RSDSA. When I returned home it took me a week to recover. The trip and the plane ride caused my pain to spike.

See-saw.

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 same kind of Nerve Blocks 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.

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!

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.

Anyway, this 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!

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 mah-velous 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 Needles and CRPS.

This is my left hand where they had the IV
RT hand, five days post block


chest, six days post block, red disappearing
















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.

See-saw

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!

 Chronic pain medications, like opiods, can work differently

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; CHRONIC PAIN PATIENTS AND ADDICTION - ONE and   CHRONIC PAIN PATIENTS AND ADDICTION TWO . 

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.

Peace, Keith Orsini
Full-body CRPS survivor for 41 years
American RSDHope


Monday, July 7, 2014

CRPS Donations

Would 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?

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.

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.

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.

Mahatma Gandhi once said, "The best way to find yourself is to lose yourself in the service of others."

CLICK HERE TO DONATE TO CRPS

Peace,

Keith Orsini

American RSDHope
www.rsdhope.org




American RSDHope announces two new ways to shop, save, and donate to CRPS!

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 . 

Check out the Cover Page for AMERICAN RSDHOPE to see the links for FIRST GIVING and Amazon's new SMILE shopping program! 

Here is the link!

UK lawyer wins huge payout for CRPS patient!

UK Lawyer Wins Huge Verdict For CRPS Patient 

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.

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.

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.

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.


Check out the complete article on our website here

Donating to websites online or buying items online

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. 


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. 

If you want to be sure that someone is raising funds for American Rsdhope you can email us or you can call us  at (207) 583-4589. You can also visit our CONTACT US page on our website. 

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.

Thank you everyone! 

Peace,

Keith Orsini
American RSDHope
www.rsdhope.org

Simulating a block by having your foot fall asleep -email questions

I have never heard of doing that and I am not sure how that would work.

Sorry it took so long to respond, we have had an inordinate number of patient emails sent to our our website.

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

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!

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.

Have a wonderful week!

Peace, Keith Orsini
American RSDHope
www.rsdhope.org

Sunday, March 16, 2014

RSD 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????

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.

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.

But I don't wannu


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."

"Well guess what? You don't have a choice here. kiddo ;-)"

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.

But just because you don't want to do something, doesn't mean that is the way it's going to be.

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.

The same holds true for deciding what to call our disease.

But It’s what I am used to and I prefer that name to CRPS! 


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! 

But because any of us, you, me, anyone who deals with CRPS patients, must help them, we must use the correct and current terminology. 

The current and correct terminology says the name of the disease is COMPLEX REGIONAL PAIN SYNDROME, TYPES I AND II, 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 "most severe form of chronic pain know to man".


Two Distinct Types 


In fact though it is two very distinct types, Types I and II. CRPS Type I, formerly RSDS, and Type II, formerly Causalgia. 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. 

For more information on the difference between the two types of CRPS please visit our website by clicking on American RSDHope or visit our main page HERE , click on the link above.

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. 

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 American RSDHope's website or the RSDSA's website so they can learn what you now know.

New Medication Coming specifically for CRPS Type I soon!


Now we even have a brand new medication coming out that has been developed for CRPS,  neridronate, that has a 100% success rate of placing CRPS Type I patients into remission. It does not work on Type II patients. If you research “new RSD medication” you may not find it but it will pop up in many different locations with a search of “new CRPS medication".  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"?

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. 

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. 

Only a few weeks ago Jim Broatch (of the RSDSA) 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’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! 

I hope that clears things up?

Keith,

American RSDHope

Nat'l CRPS Awareness