CRPS - anyone suffering with complex regional pain syndrome

How did you realize you had atrophy and where?

"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