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

Hello All, I was just diagnosed with CRPS after my last surgical procedure on July 27, 2017. It's in my left foot, for the first 10 weeks I was in bed taking pain pills every 2 hours 24/7. It wasn't for the nerve pain it was to glogg my mind so I didn't have to focus on the nerve pain that was intolerable. The nerve pain was so severe I was on suicide watch by my family. Once the doctor saw me he diagnosed me right away with CRPS, he schedule a diagnostic injection a week later and I had some relief for about 2 weeks. Since then I have had 2 injections with Botox which last for about 2 1/2 months with some relief but gives me some hope. He started me on Terazosin which is a medication to lower my blood pressure. I haven't been on it very long so i will try to keep you updated on my progress. Most recently I have been having similar nerve issues now in my right foot but not as severe but it's the beginning. I have to say what has worked the best is my faith and praying 24/7 to take the pain away. I did go to pool therapy at first it was very difficult all I did was cry but I stayed with it. Each pool session got better then I started to have land therapy which started out rough then it got better. Both therapist had gone through CRPS courses which makes it much easier because they understand what we go through. Another thing to watch out for is being pricked by needles, every time I am pricked with a signal needle my symptom will worsen for about 5-7 days. I am now seeing a Christian Pain Psychiatrist that is going to start with a program called EMDR for CRPS & Chronic Pain. I will try to keep you updated on my progress. At this point of our life we have to try anything because there is NO cure for this disease. One other thing I want to share with all of you. I have a brother that is a Nero Chiropractor that practices in Sweden for over 30 years now. I begged him to fly home which I offered to pay for his trip. After thinking about my condition and changing his work schedule he came home for 8 days to work his magic on me. At first he could not touch my left foot nor work on it so he started from my head and worked his way done day after day. By the time he left he was able to touch my foot with little resistance from me. This was a miracle that he was able to touch my foot, prior to this a fly could not land on my foot if so it was very painful. After he left to go back home he did some research to find a Nero Chiropractor near where I live. This wasn't easy because there are very few Nero Chiropractors in the USA. If you can locate one I highly recommend to go see them. The one he found for me was just starting to take course from a doctor in Canada. When and if I get up to it I plan on flying to Sweden to have my brother work on me for about 2-3 months. I cant imagine what he can do for me after 2-3 months after seeing what he did after 8 days. Again I will try yo keep you posted when this time comes, it may be he'll come back home before I can fly.
Everyone that has this disease, I will add everyone of you to my daily prayers.
Good Luck - Steve

I have had CRPS dx after four years of burning pain in rt foot due to a poorly done surgery. That was 16 years ago. It has spread to left foot and up my leg to my butt as well as up my right calf. I recently was dx with lymphedema and discovered that CRPS and lymphedema together is not unusual. I am waiting for lymphedema pumps for both legs. I will see my vascular surgeon this coming week to confirm I have lymphedema in my right arm and possibly left. This combination is unusually painful in different ways. I have put on 20 lbs but my clothing size has not changed! The heaviness in my legs makes it hard to move.
I have had sympathetic nerve blocks that helped my left leg and butt. This stuff is nasty as it affects my heart as well.
Being allergic to every pain med I have been given, I am on Low Dose Naltrexone. It took 7 months before I could reach the desirable dose due to side effects in going up to the next dose too quickly caused a variety of physical reactions. NP told me it might have to be raised as I do not have the pain relief expected. I told her I read it could take 9-12 months before full effect can be felt.