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CRPS - anyone suffering with complex regional pain syndrome
Chronic Pain | Last Active: Oct 25 3:58am | Replies (366)Comment receiving replies
I am hopping on this thread instead of starting a new one. Not sure if that is the best call, but here goes.
As with all of you, there are mysterious things happening in my body. If I am putting together all the pieces correctly, my body is an overachiever. My nerves are firing too often and too hard and my immune system really overuses inflammation. Unfortunately, this is not reflected in most medical tests. Outside of the MGUS related abnormalities in my blood test, mild neurological damage on an EMG/Nerve Conduction test, and MRI changes that do not directly impact the spinal cord, tests come back normal. Clinical exams show changes. We just don't know why. My doctor is moving away from a focus on Peripheral Neuropathy to CNS and we are experimenting with Baclofen to see if it helps. She has also talked to me about CRPS. She said I don't meet full criteria but "whatever is happening sure is mimicking that process". My pain levels are nowhere near what most of you describe. I have more trouble with swelling and balance with nerve pain that occasionally gets really bad. Most of the time, my pain levels are between 3-5, so not too bad.
For those of you who are veterans of CRPS, does any of this sound familiar? Most recently, it was my OB/GYN who told me to talk to my neurologist about nerves over-firing and muscle spasms. (Muscles throughout my body are ridiculously tight!)
Replies to "I am hopping on this thread instead of starting a new one. Not sure if that..."
From my perspective this doesn't sound like CRPS but remember there are three stages to it: acute, sub-acute, and chronic. Early on they thought I was full of ya know, and they were convinced I was a drug seeker. Some symptoms during acute for me were inflammation, uncontrollable pain, and this leads to your body countering physiologically naturally by trying to attack the problem through swelling, the nerve signals in the body, to the brain ,etc. Your description seems accurate of the way I remember the acute to sub-acute stage. Chronic is a whole other nightmare.
Anyways, it wasn't until I switched to Jackson Hole, WY that it was taken seriously. The MRI and X-rays didn't show much other than the initial injury, but when I was describing what was happening within my own body he didn't have a CRPS answer. It's when I went to The New York Hospital for Special Surgery that they called it almost immediately; classic symptoms and more tests were done. Mayo Clinic and Scripps Clinic confirmed with at least half a dozen other pain specialists, neurologists, surgeons, etc.
Have you sought a second opinion, and do you have access to doctors in your area that understand CRPS?
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@jeanniem Hello there. Hopping on this thread is perfectly fine and was a smart idea.
You are investigating, and rightfully so. Good for you! We've got to be our best advocates.
While I do not have CRPS and can not speak on it specifically, I do have a chronic pain disorder called Central Sensitization Syndrome. It can cause nerve and muscle misfires along with balance issues. Are you familiar with CSS?