← Return to CRPS - anyone suffering with complex regional pain syndrome

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Welcome @pfox.
You mention that your daughter has CRPS. I just want to make sure you mean complex regional pain syndrome which used to be called RSD (reflex sympathetic dystrophy). If yes, we have a couple of active discussions in the Brain & Nervous System group that you may wish to join.
– I developed CRPS (or RSD) http://mayocl.in/2cX10nN
– RSD/CRPS http://mayocl.in/2nJPDog

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Replies to "Welcome @pfox. You mention that your daughter has CRPS. I just want to make sure you..."

What’s the difference between that and fibromyalgia/chronic fatigue, which is what I’ve been told I have.

you are right – complex regional pain – my bad – I appreciate the additional information.

It is very similar but fibro – best way to describe CRPS is that all the known afflictions have been eliminated by various doctors from RA, neuropathy, carpal tunnel, fibro, etc. the nerves in the body feel like they are on constant fire with no relief. the disease starts slowly and builds in intensity – it can spread to all parts of the body. unknown what triggers the onset – from a surgery or even twisted ankle can trigger the onset – what medicines that work for fibromyalgia does not work on the CRPS. a slight breeze can cause flare up, advance stages can not tolerate heat or ice, — no relief to date. hope this helps a little.

i was diagnosed 4 yrs ago with CRPS. I have had 2 nerves cut. each time the pain has jumped to another nerve. My dr. wants to cut the 3rd nerve but said he is 99 percent that it will jump to another nerve. I have been in the hospital 3 times with a bad infection caused by the tissue deteariating. Has anyone had similar experiences?

Yes, I should have clarified. Thank you. Chronic Regional Pain Syndrome (CRPS) formally Reflex Sympathetic Dystrophy (RSD)

Hi all I just heard bout this forum I’m new. I was diagnosed with CRPS type 2 I get hives on left side of body do to a work injury , to my left hip lower back. Long story felt a take my breathe away pain in left hip/ lower back I fell onto big rocks without bracing my fall, company dr kind of blew my hip pain off said it was my back muscles had x ray of back called it a lumbar strain contusion, allowed to work 3 monthes entire time complaining of hip pain they did bone scan and closed mri finally that showed possible fractured hip starting to heal and hip labrum tear. Few days after injury I was getting raised hives on my hip that burned couldn’t touch them , asked company dr. Said no clue. Finally after being pissed I got my own drs had labrum surgery which lead to hives coming two days after from my neck to my ankles. Surgeon saw I explained the pain to touch lots of other issues I’ve never had in 47 years my left ankle swelled no reason etc. all my 4 treating drs that are amazing all agree , of course the work dr that’s hired says he doesn’t think I do. ( save ins. Money) is why says I don’t hit the Budapest criteria which all my drs use and I have 3/4 of all .. I’m getting Charlie horses so bad I’m in tears has anyone had this? From my hip to toes on left side. My pains a constant 5 when it’s real bad a 15-20 I’m in PA and on medical marijuana, 2400 mgs of gabapentin and flexerall. And Suboxen which is very interesting, was on pain meds years and years ago. Never did drugs I didn’t like the opiates and needed to ween down they prescribed Suboxen which also helped with the pain without the opiate side effects, I stopped the subs 5 days prior to surgery, when my surgeon saw the hives after surgery off the subs he pulled up a power point and said I knew I saw this in the crps power point, one of the Medications in the Suboxen helps desensitize the skin in patients that get the hives from the crps / pain they upped to 3 a day and it helps keep hives at bay! Love that I found this. Love to chat with anyone that has similar issues!!


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