CRPS - anyone suffering with complex regional pain syndrome

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In 2000, I was diagnosed with fibromyalgia, which is body wide pain along with many additional problems that come alongside Fibro. Including GERD , IBS, chemical sensitivities, ect ect. I have taken comfort with finding out everything I can about this disease, online and in reputable books. I believe that CRPS is just another name that the medical community has come up with, for Fibromyalgia. I send a prayer to your family. Read about Fibro and CRPS in online sites like this one, Mayo clinic, WEBMD, any medical schools. Fibro exists in up to 10 million people. Is your daughter on medicines like Gabapentin? They are used to treat nerve pain. I have been on Gabapentin for about 15 years. i have never experienced any of the side effects that some report online. Get your info on medicine from a trusted pharmacist and your doctor.

It used to be called in the 90’s, Reflex Sympathetic Dystrophy ~ identified in the civil war. Ppl still could feel seething pain in their foot when the foot was no longer there anymore. It seems there is a short circuit in the nervous system to the brain that does not shut off, even after the initial injury has healed or still has residual pain, the brain sends shocks to get off the foot or rest the arm.
Mayo in Rochester (not all mayo campuses are the same FYI) did a sympathetic block, which is the test for CRPS or RSD and it’s also the treatment!
After a few minutes my cold pale foot turned pink & warm!
The pain subsided.
The next morning, I could walk to the bathroom with NO pain and no limp! It was like a miracle!
So it lasted about 6 months & got another sympathetic block locally, and Mayo sent the orders over to an anesthesiologist so I didn’t have to go all the way back to Rochester ~

"I believe that CRPS is just another name that the medical community has come up with, for Fibromyalgia."

*added here at the end, CRPS was called causalgia in the civil war. It then became known as RSD, reflex sympathetic Dystrophy. It actually has been given many names over the years, including, sadly, "the suicide disease." The diagnosis of fibro is fairly new historically, newer for sure. *

This is not true. Many people with CRPS also develop Fibro but having fibro does not include CRPS at all. Very different. Its hard on these kinds of sites when people put up thoughts as facts.

CRPS Complex Regional Pain Syndrome is always caused by a physical trauma. The trauma can be minimum be comparison (sprained ankle or even just a needle stick) but the way it shows up in the body is different. With CRPS it begins (almost always) in the extremity where the trauma was and usually within a month or so tho it can take years for a diagnosis as its an orphan disease and few drs have even heard if it and may in tjeir lifetime only have 2 or 3 patients with it. Its fairly rare - esp stage 3 and 4. Thd pain is very localized at least at the start. If by the time you are diagnosed, its not localized, you've had it for a long time undiagnosed. The key symptoms are burning, a discolored foot, hand (usually first tho I've heard of times it wasn't.) Over years the red hot foot can become cold and pale.

I've had it for 45 years. With CRPS it is difficult to put weight on the injured leg, foot, for example. You could tell I had something very wrong when looking at my foot where it started. With fibro its widespread without there being one focal point of extreme pain. With CRPS, a cats whisker or a feather or a breeze, brushing your skin, can feel like a razor blade.

I have crps and fibro and they are very, very, different. I have a friend with fibro and our pain is different. Both cause some similar symptoms fatigue (all pain causes fatigue as it zaps your energy. Both can cause brain fog but so do many illnesses, most commonly lately long covid.

Many people with long covid are ending up with fibro. On the other hand, people who have CRPS before covid can end up with a spread because of elevated cytokines levels. Cytokines are elevated in the blood when there is inflammation, and both of these illnesses are autoimmune and therefor causes by an inflammatory process.

The one thing both of these two illnesses have is central sensitization. The central nervous system becomes hyper aroused and our brains interpret most touch as painful.

For me, if someone pokes at me with their fingertip, it hurts, almost anywhere, that's fibro. With CRPS, the pain is very localized. If I have it in my foot, it won't hurt to touch my arm but a light breeze on my foot hurts so much saying it feels like an ax feels overstating it, but ask anyone with CRPS. The wind hurts. That is not the case with fibro.

I am by no means saying fibro is not painful, I know its painful, but in a different way. The more they study our nervous systems in books like "the body keeps score" and our immune systems, the more commonalities are found in many chronic pain issues. Fibro is more and more common tho there are still too many doctors that don't believe its real. Some people, most people who get CRPS from a body trauma/accident etc., with recover rather quickly esp perhaps a nerve block cures them.

Few comparatively, I've heard as little as 10% of people who develop CRPS go on to become completely disabled by it for pretty much the rest of their lives tho remissions are possible and not ALL days are shear misery but months and years at a time can be and are for many.

I'm sorry you are trying to live well, the best you can with fibro but I don't want someone coming here thinking these are the same syndromes. They are not.

I just wanted to clear uo your assertion esp for people newly diagnosed. If someone goes into a doctor saying they are the same thing, they will lose all credibility as drs then get angry that they self-diagnosed online with false information.

I hope this help. Neither are "fun." The more serious cases of either can take you out of life and leave you feeling disabled. Fibro does not cause one extremity of your body to swell up, turn red or purple, become extremely hypersensitive to touch (the lighter the touch, the worse it feels.) CRPS can spread to the colon, bladder, ribcage, I have it in the larynx post covid.

And so many worse off than me as it becomes full body, can affect your esophagus and I know at least one person in a wheelchair, unable yo walk at all and has a feeding tube for nourishment. This doesn't happen with fibro. Contractions don't happen with fibro unless the person stops moving their hands and fingers 100%.

People with fibro might be more susceptible to developing CRPS 1 or 2 after an injury because central sensitization may already exist in their body, but if you have fibro and develop CRPS, you will be very clear on the difference.

Neither syndrome makes for happy campers. Just wanted to clear that up for people who land here. Thanks

I also have fibromyalgia and in pain every day, sometimes severe. I haven't taken any drugs for it yet. My Dr prescribed 100mg gabapentin 3x a day but I haven't started it yet. Afraid of side effects I guess. She didn't say anything about increasing the dose down the road, and said I could take it "as needed" for pain, which conflicts with things I've read about the drug. Can you tell me what dose you started with and what dose finally helped with pain? Do you have to continually increase the dose as your body gets used to the drug? thanks.

Hello. I am sorry you are suffering from this disease. I do not have any qualifications to answer questions about medicine. I have recommended this book before, but the book The Fibro Manual by Dr Ginevra Liptan is excellent, It covers various medicine, supplements that might help, gentle massage and other good stuff. She is an M.D. who has Fibro herself. I can only encourage you to learn all you can from REPUTABLE sources and not from folks who have had unwanted reactions to meds. Every single person with Fibro reacts differently to medicine. The best thing I have ever done is to find a good, caring doctor who wants to help you with Fibro. Get your info from the doctor and/or from a trusted pharmacist. Be open to whatever your trusted doctor wants you to try.

fibromyalgia is totally different then CRPS or the original name Reflex Sympathetic Dystrophy. It dates back to the Civil War (the name back then was Causalgia) when soldiers who lost limbs would get this condition which is listed as the #1 most painful condition on the McGill Pain Scale. There are two types. I have had the disorder since 2017 during foot surgery when 3 nerves were severed causing RSD type 2 (documented nerve damage) type 1 does not need actual damaged nerves. They can confirm the condition by doing a EMG study sending electrical impulses to the muscles to see how they react. In a short time mine is whole body. My one leg atrophied and is smaller than my other leg. I have been through skin rashes like shingles, gastroparesis, muscle spasms, the list goes on and on. During the surgery and the nerves being severed what it does is turn on your sympathetic nervous systems "fight or flight" response. I feel pain twice as bad as the actual injury. My pain sensors are permanently turned on. When they ask at the doctors to rate my pain I will not answer that. A 10 on the average pain scale is a good number for me, as it's the worst pain for someone else. my worst pain would be rated a 20....the earlier it's treated the better your outcome is for it not to spread to other body parts. It usually comes from an injury or some sort of trauma to one of your limbs. That's the most common cause. There is no cure. You can go in to remission but it is rare to just go away. Mine was in remission with no muscle spasms for about a year. In December of 23 I had an accident where I stumbled on a walkway that had uneven bricks and I slammed my face and head in to a heavy glass door then the cement ground. I was knocked out for over 30 minutes. I had a concussion and I hit the door with such force I broke my neck. Luckily it could have killed me or paralyzed me...I healed my neck by wearing a hard brace for three months. I have been left with Post Concussion Syndrome and lost my short term memory. My symptoms of the RSD have come back due to the additional trauma to my head. If anyone has CRPS with spasms especially in your feet you need to fight through it and force yourself to get up and walk. The weight of your body will take away the spasms pretty quickly. I get spasms now in my leg which are horribly painful. I find putting a heating pad on the area is very helpful. I take no pain medication due to stage 3 kidney disease so I just do the best I can when those spasms hit. For my stomach issues I actually was given a motion sickness drug that I put under my tongue the minute I feel those stomach spasms coming on...Night time is the worst ....I find Valium 10 mg. helps to take away the stress and anxiety of the pain. It's been a long 7 years but I manage to deal with it....God Bless you all for living with chronic pain. I was in therapy for awhile to try to handle such a life change and how it did not have to happen. I was okay and was in a good mental place. I did not need to have something else so horrific happen finding back where I started. But I can get thru this also. And if I can't ......well, I won't remember it. Feel free to contact me if you have any questions. I have become somewhat an expert since so many doctors have no idea what CRPS (RSD) is......they need to teach it in medical schools......

I just wrote a similar response not seeing yours first. You must be one incredible person to have lived with CRPS for as long as you have. I have had RSD type 2 for 7 years and as I sit here writing this I wish I could have my foot removed. During foot surgery, after my foot decided to move and then dislocate my big toe I was forced to have the surgery and they severed nerves. My foot barely moves, it is almost paralyzed. My big toe with no hardware inside has no movement. My foot feels like glue is stuck on it, it's awful. I've had the shingles like rashes, I will lose my voice at times, the muscle spasms at night you wish you were dead. My leg is atrophying.....I was so glad to read your comment explains these two disorders are completely different. People don't realize how serious CRPS/RSD really is. No way can the two be compared.....I remember years ago I saw a doctor and he had no idea what was wrong with me and said "You probably have Fibromyalgia"......to which I said...."Is that what you tell all women when you think it's all in their head".....He laughed and walked out of the room....That kind of said it all...Thanks again for such a good comment...Mine is hidden. I am going to re-post it as it's own......

what is exactly scrambler therapy. is it something covered by insurance or experimental?? I've heard of it but no one has ever explained what it is.
thank you

How did you realize you had atrophy and where?