Monday, December 10, 2012

CRPS 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.

Not just for the few hours that that their dear loved ones are visiting you and sharing their very favorite "home remedies" that they are sure will "cure you" of all their "supposed pain issues" because; "they too once had real bad pain so they know exactly what you are going through". 

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? 

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. 

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;

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.

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. 

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, 

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. 

How does this relate to the symptoms of CRPS? Check that out on American RSDHope's CRPS Symptoms Page   The fourth main symptom CRPS patients deal with involves the Limbic system;
Insomnia & Emotional Disturbance. 

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?

According to Doctor Neil Neimark at the Mind Body Education Center, yes, there are clues to look for, symptoms that you should be aware of. They are;

Physical symptoms like tension in our muscles, headache, upset stomach, racing heartbeat, deep sighing or shallow breathing. 

Others may experience them as emotional or psychological symptoms such as anxiety, poor concentration, depression, hopelessness, frustration, anger, sadness or fear.

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.

(information from The Mind Body Education Center)

So now that we are aware of what to look for, know the type of 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?

end or part one - 

Monday, October 8, 2012

Cervical Nerve Block - what a pain in the neck

Ok, that was bad. But so is the pain.

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.

So, what did we do to try and solve this conundrum? (hard to break the habit, sorry).

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!

Doc, I really think I need an MRI.

Passive therapy first please. Let's start there.

Ok. But then can we do an MRI?  

We'll see. (the most dreaded words any child, and then any husband, wants to hear. We all know what they really mean).

Go to PT and learn new exercises, some there, some more to take home.

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.

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.

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!

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.

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.

How many months now? argggh.

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, cervical spondylosis  , 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.

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.

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.

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.

(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).

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.

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!  

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.

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.

Ok for now. Hopefully the months of August and September were much better for you guys!

remember, November is coming! NOVEMBER IS CRPS AWARENESS MONTH!

Check out the website to see what is coming up for awareness. If you have something to post, some event, send it on in to RSDHope 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.

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!

Want a copy of the National CRPS Awareness Ribbon for your Facebook page? Check it out!

or how about one of the new National CRPS Awareness Ribbon Pins! only $2 each or less if you buy them in quantity or for a fundraiser!  or how about a CRPS Awareness Magnet for your car or truck! 

I will close for now.

Have a good day folks. Sleep for me and for others who don't!


American RSDHope

Sunday, September 2, 2012

CRPS RSD and Nerve Blocks - Do they work? How quickly should they be done?


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 RSDHope Teen Corner and I get asked the question a lot by patients and loved ones who email us through our Contact US form at American RSDHope

It is a very important question for CRPS patients

But it seems there are too many Drs out there who still haven't gotten the message. One Doctor who hasn't gotten the message is far too many in my mind. 

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, the cards and letters thing, not the Anesthesiologists thing) . 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, not even told they should consider them until it is too late. 


Ok, here it is. 


Read the article that discusses CAN THERE BE PROBLEMS WITH A BLOCK?, I have to add a new part after reading a new email I got today. 

Also read the article that is at the bottom of that page SMP AND IMP, WHAT IS THE DIFFERENCE? This is very very important. Did I say it was important? Let me say that again. It is very, very important! 

It is also key to understanding the following questions we get asked a lot.

1) Is there a certain time period for getting sympathetic nerve blocks? 

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? 

Answer - yes and no. 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. 

So, is there a time when those sympathetic nerve blocks will be most effective? That is probably a better way to word the question.   

Yes. 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 symptoms of CRPS can sometimes be quite bizarre. 

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.

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. 

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. 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. 

2) Is there a typical number of sympathetic nerve blocks that are given? 

Do they usually just give one, or three? Should I stop if the first one doesn't work? 

Answer - Usually they are given in a series of one to three, or three to five, depending on the Doctor or Clinic. 

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? 

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 especially if the first three didn't work. 

One patient raised her hand and said "My Dr says you can keep giving the blocks as long as you want. I have gotten over 100 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. 

He finally said "When did he tell you he thought they might start working? 125, 150, 175 blocks?"

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! 

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. 

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 are 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. 

Hey, if you get blocks and are in less pain, fantastic. 

But ....

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? 

The way sympathetic nerve blocks are supposed to work 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.

The music/drums starts out slowly 
(first block a little relief, maybe hours, perhaps a day or longer), 

then builds a little more, little louder now 
(second block a little more relief, instead of a day maybe you get a week or two of relief)

louder still, you can feel the ground start to shake 
(third block really gives relief, instead of week or two maybe longer, 3 weeks or more)

So, if these three work one of two things will happen next. 

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).


2) The Dr will try a fourth block to see if you can get even longer relief. 

HOWEVER, if the Dr, (typically an Anesthesiologist does these types of blocks by the way), 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). 

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???

Again, look at the article on SMP and IMP here.

Remember that your Doctor is part of your healthcare team and you are the captain. It is ok for you to question any play call. If you don't understand something, ASK!  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! 

If your current Doctor doesn't like to discuss these things with you, believes he doesn't need 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. 

3) How does a block actually work? What is entailed in one?  

Answer - There is a good link here that illustrates a lumbar sympathetic block 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. 

You can visit one of their other pages if you want to get an overall view of a vast variety of INJECTIONS  including some of the other types that would be given to CRPS patients. 

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.

Peace and freedom from pain, it is all we seek.

Keith - 38 year systemic CRPS survivor

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.  

Sunday, August 26, 2012

Pain 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?

Ok, Which Pain? CRPS pain? Fibro pain? Back pain? Eye pain?

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?

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?

And compared to who? You haven't seen me before. How do you know what my 7 is like, or my 8?

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?

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.

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.

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.

There are Pain Conferences that occur usually ever year where pain management physicians gather and perhaps this issue could be addressed there?

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?

You will have to do your part as well. That may mean keeping better track of your symptoms and pain levels in between visits.

Average Pain over the last month?
Worst level during that time? Best level during that time?
What symptoms should be included? Aching? Crushing? Throbbing? Spasms? Shooting? Electrical feeling? Difficulty walking/standing/  Difficulty falling/staying asleep?

What about a picture?

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.

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.

So what do ya'll think?

Send your suggestions to me and I will put them in a future post here!

Peace, Keith
American RSDHope

National CRPS Awareness Ribbon

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Or even to add to your daily emails? Contact American RSDHope here!

Monday, August 6, 2012

What was your week like? As a CRPS Patient like? Must be nice to sit around and do nothing all day huh? Argggggghhhh Sound familiar?


Ok, this has been an interesting week.

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 running 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.

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 are smart enough. So many of them are told the opposite, a lot. Mostly at home. The one place where it should never be said.

We tried to give them two pieces of advice.

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.

2) You can accomplish anything. Don't let anyone tell you that you are less than you are.

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.

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.

I have mentioned it here before I think and most certainly on the RSDHope website  volunteer somewhere, anywhere, even if it is only for a few hours. It will help you, help others, and maybe change someone's life!

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.

Ok. How did I get started with that?

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.


Ok, it is now tomorrow.

Ahh, the magic of the internet. I bet you didn't even notice I was gone!

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 being in chronic pain 24/7 drains you. It saps the strength right out of you. When you add in the fact that because of the disease and/or its' side effects and the medications you take for it and their side effects the chance of getting any kind of quality or quantity sleep is out of the question for most of us.

Now throw in the physical therapy and exercise that a CRPS/chronic pain patient must do every day simply to stay at the same level where they currently are right now, 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.

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?

Not done yet.

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.

Just a reminder for all the "normals" out there. Love that word, "normals".  Most, not all, but most CRPS patients suffer from allodynia and other symptoms. 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?

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)

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!

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.

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! What does CRPS feel like? 

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 very desperate, 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 quote here because the quote is almost always the same, "It must be nice to sit around all day and play video games. I wish I was on Disability!"

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.

I also know how I responded 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, live, in the room when these people said these things. As angry as I was, am, 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?

How do get across to these people what it is like to have this monster inside of you, have all of these strange and disturbing and bizarre symptoms  going on at the same time and finally learn it is actually ONE disease, finally get the correct diagnosisif you are lucky after only 3, 5, or 8 Doctors and then still have your loved ones not believe you!

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?

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.

But there has to be some way, doesn't there? Let's figure it out. Let me know your suggestions.

send them to me!

I will post the best answers in an upcoming post here.

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.

Peace and freedom from pain, they are all we seek,

Keith Orsini
American RSDHope

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!

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! 

Send an email to RSDHope and ask for the ribbon in the large size for the website or Facebook page or the smaller size for email, or both!

Saturday, June 23, 2012

CRPS and our other Pains and/or diseases ; does it affect them?

Someone once asked me if CRPS pain is worse when you have other illnesses and/or pain. 

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).

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?

Again, I can only go by my own case here and how I and my Drs deal with it. Each case is different.

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. 

I was on Opana ER and doing fairly well until they changed the formulation in March of this year, similar to what they did to Oxycontin ER in the fall of 2010. 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, again. 

I switched to the fentanyl patch. 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 that can cause. 

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. 

- what is an opiod agonist? 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.

Read more: What Is an Opiate Agonist? |

Ok, so how does my CRPS affect my other diseases?

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.

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. 

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. 

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.

"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;

1) Your mattress isn't what it used to be.
2) You over-did it with the kids rough-housing last night.
3) You spent a little too much time playing golf over the weekend.
4) Once in a while your old football injury kicks up.
5) Your wife is pregnant and you are experiencing "sympathy pains".

You might think you are commiserating but in reality you are minimizing our pain, making light of a situation we are already having difficulty dealing with, and especially because most likely our back pain has escalated our other chronic pain issues such as CRPS. 

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!

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. 

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!

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;

1) Go away with rest, heat, and soaking in the tub, or

2) Require an epidural injection of the lumbar region.

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. 

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 radiculopathy 

Anyway, long story. Many of you know all about this so I don't need to explain.

Bottom line is that these types of things; back pain, disc herniations, fibromyalgia flares, flares of other diseases like CFIDS, 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. 

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.

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? 

So yes, I would say that CRPS does have an effect on other pains and illnesses ;-D

Peace, Keith Orsini

Friday, June 15, 2012

CRPS 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.

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, American RSDHope, 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. 

Before the RSD/CRPS Community chose the colors, red/orange combination with flames representing the burning pain of CRPS, 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.

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.

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.

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 CONTACTING US VIA EMAIL. 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.

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.

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. 

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.; CLICK HERE 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. 

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 CLICK HERE AND LEARN MORE.

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.

In the meantime, we have a MENTOR PROGRAM if you would like to help other patients.

Are you a teen with CRPS? If so, we have a very active RSDHOPE TEEN CORNER for those who are 14-21 and have CRPS.

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!

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.

We also have a LOCAL SUPPORT GROUP section on the site and all sorts of links in the LINKS SECTION (click here and then select from the drop-down menu)

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! 

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!



American RSDHope

Tuesday, May 22, 2012

Paula Abdul - again talks about CRPS

Ok, so yesterday Paula Abdul once again took to the airwaves to talk about our disease. 

This time it was to talk about a product she is now a spokeswoman for, something called Fembody. 

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. 

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 link to the Dr Oz Show and info

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.

Be well everyone, 

peace, Keith 
American RSDHope

Saturday, May 5, 2012


Ahhh, Opana ER, I hardly knew ya!

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.

1) 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;


2) 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;


3) 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.

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 Digestive System is endowed with its' own local Nervous System 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 CVS or cyclic vomiting syndrome and it involves migraines and the gut.

Don't think you are alone in this. It happened back in 2010 with Oxycontin when they changed that medication ( Oxycontin Re-formulation - not well received )  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, here is just one I have followed 

Unfortunately the purpose behind these re-formulations was supposedly to deter abuse.

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.

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.

Well in both of these cases they severely underestimated the people they were up against and their desire for the drug, and apparently the financial demand for it. In both cases within days the internet was filled with instructions on how to break it down.

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.

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.

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.

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 re-tooling a successful product, Endo Pharmaceuticals will be losing quite a lot of customers. What is that old expression? If it ain't broke, don't fix it.

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).

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.

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, no pun intended.

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.

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.

Praying for all of you as well.

Peace to you all,


American RSDHope