Regional Pain Syndrome

Question: My partner suffers from Complex regional Pain Syndrome can it spread? It started in his hand and he gets burning pains shooting up his arm and he feels like he has sun burn. Does anyone know if it can spread because he now suffers with his shoulders and back. His other hand twitches and he keeps dropping things. He gets irritations in his legs and has now started to get pain in his feet his pain symptoms are becomming worse even though he is on medication. Can it Spread all over the body? It would be great to hear from others who know about the condition or have the condition Thanx

Answer: There are really four stages to this problem. The middle stage is broken into two parts, type 1 and type 2. The overall classification is in three stages. The first is reversible and the easiest to handle. The next stage is the one that is broken into the two stages. If the first part is not treated the advancement goes onto the later stage and that is difficult to reverse. The last stage is the worst and very difficult to manage. The use of medication is effective during the first stage. After this time becomes a factor. The longer you wait the worse the odds become. The disease is and can become progressive. Again you want to treat it do now but go to a center in a large medical school. There they will no doubtedly would have a person that specifically works with that disease. Not to say that a local community doctor isn't up on what is the latest material but the doctors at the large medical schools are up on these things.

Question: What is the difference between chronic pain syndrome and complex regional pain syndrome. Also, what causes ea each? Does anything...medication or otherwise help you?

Answer: As icesk8er said, they're the same thing. "Chronic" regional pain syndrome is, as far as I know, just a common mistake. Complex regional pain syndrome is the latest name for a condition that has about a million names. The most common is reflex sympathetic dystrophy (which many still prefer over CRPS, myself included). As for what causes RSD/CRPS, that's a much more difficult question to answer. Really, nobody knows. There are lots of theories out there, ranging from the classical theory (that it's a dysfunction of the sympathetic nervous system) to the latest theories about inflammation (mostly Dutch research). The truth is that someday we'll probably find out that there are a few different things causing similar symptoms in different people. There are lots of different treatments for RSD/CRPS. Usually, sympathetic nerve blocks are the first thing to try. I had temporary relief with those, as did icesk8ter, I believe. Some people have more permanent relief. I had even more success with continuous blocks. Also, there are many medications to try. Usually, an antiseizure drug like Neurontin or a similar medication called Lyrica are among the first things to try. Some antidepressants like the older tricyclics (amitryptiline/Elavil and it's relatives) are often used. There are newer antidepressants that are also sometimes used, like Cymbalta. Many RSD/CRPS patients also take muscle relaxants for spasms or other muscle problems, which are common with this condition. Some people take strong pain medications as well. I found that blood pressure medications (Clonidine and nifedipine) helped me somewhat, as they have some calming effect on the sympathetic nervous system. Physical therapy is also really important. It's essential for patients to keep moving so they don't lose the use of the effected limb. It's also important to try to keep muscles from atrophying. There are other medications to try, and there are also a lot more interventional treatments (by that, I mean procedures and nerve blocks). Icesk8ter mentioned spinal cord stimulation, which is an implanted device that helps many people with RSD/CRPS. I had one as well, although I don't have it anymore. I hope this answers your questions!

Question: Can anyone tell me how they cope with Complex Regional Pain Syndrome? My dad was just diagnosed with this but it will be 2 more weeks before he can get in to see the rheumatologist. I even have him on the emergency call list if anyone cancels so that I can get him in there ASAP. I have been researching this syndrome for a week now but my dad is in severe pain. I would appreciate any advice that anyone can forward to me that may enable him to get at least just a little bit of relief until his appointment. Thanks! :-)

Answer: Depending on the region the pain is in. I used hot towels (helps bloods flow) and relaxation. Ask the doctors about a lidocaine patch (Lidoderm) or even a nerve block.

Question: Figure Skating again after having Complex Regional Pain Syndrome? I have had Complex Regional Pain Syndrome (CRPS) for the past year and a half and now after several surgries I have almost all of my pain resolved and I want to go back into Figure Skating again. I was a competitor and really into it before I got my CRPS, and now I want to go back into it, but I don't know if I should because if I were to move a lead from my Spinal Cord Stimulator (SCS) I would be in pain again because that SCS is what blocks my pain. What does anybody think about this who has figure skated/dealt with CRPS/or is medical professional. I've talked with my doctor and he's pretty much left it open to me to decide and I don't know what to do can anybody give me some advice? What is everbody's opinon about skating again after having getting a chronic pain syndrome like this and having the possibility of it coming back because of a fall or something? I've had my SCS leads in place now for a little over 4 months. I do know how easily they move because I've had 4 lead revisment surgeries because my heavy scarring from my scarring conditoin causes them to move or have the stimulus be blocked.

Answer: Hi there, I've had CRPS for 8 years now, and was very active before that so I know where you're coming from. Congratulations on such a good outcome. I can't go back to what I used to do because I still can't walk even after fairly major treatment (including SCS) but in your position I would be a little be wary: I know how easily I shifted my SCS lead early on- if the implant is a fairly recent thing, it might be an idea to wait a little while longer to reduce the chances of you pulling your lead. I'd also be worried about new injuries and spread of the CRPS to somewhere else (unfortunately have "been there, done that" as well). Sorry that I can't offer better advice. I hope you come to the decision that is right for you.

Question: How have you, or someone you know, coped with Reflex Sympathetic Dystraphy/Complex Regional Pain Syndrome? I am diagnosed with RSD/CRPS that afflicts my right foot. My family and I have been dealing with this for about 8 months and I have undergone 14 sympathetic nerve blocks and a lot of physical therapy. I am currently on pain medication and really would like to not be at this point. Anyone out there try something that has worked for them? Any stories of being cured?

Answer: So, I actually came across your blog while I was doing a random search once! I'm sorry to hear about your problems with RSD. It can be a very tough thing to treat. "Cure" is a loaded word. The word that is used for RSD is actually remission. And it is possible. It's also definitely possible to find treatments that work. Sometimes it's not possible to get 100% relief, but I firmly believe that everyone can find something that will help enough to regain function. What worked for me were TECs (tunneled epidural catheters), which gave me a continuous nerve block for months. Others have experimented with medications and eventually found things that work fairly well. I did find some meds that helped. I did pretty well on blood pressure medication, actually. I also know people who have had a lot of help from spinal cord stimulators (I know, implanted devices sound scary, but what works works). I know one of my friends who has had success with SCS will probably answer your question soon. I also had an SCS for some time, but ultimately had it removed (with no bad effects). There are treatments even beyond what I have experience with, and new things coming out all the time. Unfortunately, much of this process seems to be trial-and-error, because different people tend to respond to different things. As for a positive story, I can tell you that I once had RSD in my arm as well as my leg. I have not had any problems with my arm since my cervical TEC and follow-up occupational/physical therapy. It's about as good as I could ever hope for. Even my leg is much better. I still have problems with it and sometimes the pain gets bad. But it's not severely impacting my life like it once did. It was a really hard process to get here, and there were times I thought that I would be a physical mess forever. Luckily, I'm not! It's been 12 years since I was first injured, and today I think I've reached a point where life is good, even if my leg's kind of messed up. My only suggestions are to keep positive, keep searching and educating yourself, and keep doing whatever you can to distract yourself! I really hope you find something that works well for you, and that you can get back to life without RSD!

Question: how do i treat RSD or complex regional pain syndrome.? Now im going to a mayo clinic in Rochester Minnesota. Anything else I could do for the time being?

Answer: Actually, staging of CRPS is well and truly outdated. However, you are correct about desensitisation. Using different household materials is the best way - if you are having a lot of problems with sensitivity to touch, start out with something very soft (e.g. cotton wool) and work your way up to more coarse materials. Rubbing and tapping is good, as is something like a warm bath. Another important thing is to keep moving and using your limb as normally as you can without flaring up your pain too badly. A lot of CRPS patients develop guarding behaviours, which leads to disuse atrophy and also reinforces the abnormal nerve signals. To help with this, you can try starting 'mirror therapy' at home. All you need is a mirror large enough to hide your CRPS-affected limb. It is a little bit hard to describe, but you need to sit with you bad foot (or hand, or whatever is affected) behind the mirror so that all you see is your good foot and a reflection of your good foot. Start gentle movements with both feet while watching the reflection of your good foot. It sounds bizarre and I don't think anyone can really explain how it works, but it's thought to help 'retrain' the brain and normalise some of the nerve signals. I'm guessing that as you're waiting for a pain clinic appointment, you're probably being seen by your general practitioner? It might be worth talking to him/her about beginning a medication such as amitriptyline. This is actually an antidepressant, but in low doses can often help with nerve pain such as that of CRPS. If you're having difficulty sleeping it can also be helpful for that. They may not feel comfortable prescribing it, especially if they've no experience of its use for this purpose, but it's certainly worth asking. I've been dealing with CRPS for 9 1/2 years and have been through pretty much every treatment under the sun, so if you've any particular questions please feel free to email me. I hope that that is some help to you. All the best with your treatment and I hope that it brings some much needed relief.

Question: Reflex Sympathetic Dystrophy / Complex Regional Pain Syndrome? Does anybody else out there have this condition?

Answer: I do, as you already know. I've had it since knee surgery when I was 14. I've lost almost everything to CRPS. I've had poor responses to almost all the treatments I've tried, and have too many side effects with most medications. I'm now on 400mg of tramadol & 60mg of baclofen. The only thing that has given me some relief is my spinal cord stimulator, and even that is not working nearly as well as it used to. I've spent every day of the last couple of months with pain levels of 8-9 out of 10 and I'm getting fed up. Add dystonia and severe muscle spasms (to the extent that I get muscle tears) to the CRPS pain, and it's far from a pleasant life... I haven't been able to walk more than a couple of steps without crutches for over 18 months now due to the way it's deteriorating, and I've now got major problems with my hip & knee on my non-CRPS side. I can't remember the last time I slept for more than about 1/2 hour in one go, or the last time I slept for more than about 5 hours in an entire night.

Question: How do you get S.S.N. to understand the problem I have CRPS. Complex Regional Pain Syndrome .? I have file twice and still not getting any where with them .I given all doctor, medical, and rehabilitation institute. I've went to State of Missouri Department of Elementary and Secondary Education Division of Vocational Rehabilitation . They all say do to the disorder work is imposable

Answer: Talk to an attorney that handles social security disability claims. I know not one person whom has successfully gotten social security disability with out the help of an attorney. They will take a percentage of your retroactive. It is a very time consuming process and you need to be unemployed due to your disability.

Question: What cures Complex Regional Pain Syndrome?

Answer: See link: http://mayoclinic.com/health/complex-reg…

Question: Does anyone suffer from Complex Regional Pain Syndrome (CRPS) ? I have had it for almost 2 years now and for my senior thesis I am doing a documentary on how people are affected both physically and emotionally by this enigmatic condition. If you would be interested in sharing your experience, I'd love to hear from you.

Answer: Hi - I have had CRPS/RSD for nearly ten years, following a knee surgery when I was 14 and worsened by another when I was 20. I now have it 'full body' - both legs, both arms, and also have dystonia, as well as gastrointestinal and cardiac complications. I've been through virtually every treatment there is - mirror and motor imagery, physio, sympathetic blocks, ketamine, oral medications, SCS, intrathecal pump, etc., and despite that it continues to get worse. It has now left me in a wheelchair, almost housebound, and with the doctors telling me that they've never seen such a severe case and that they don't know what to do for me. I'm happy to help you out if I can, so feel free to email me if you have specific questions, would like an extended version of 'the story', or just want someone to talk to.