Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-13-2013, 02:32 PM #1
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Default Help with Chronic Pain Syndrome

First, I must ask the relationship between RSD/CRPS and CPS. I have read that these are definitly two different things, but when I search for CPS I keep getting RSD results. I'm having a really hard time finding a forum or some relatable stories about CPS. My best guess is that if you have RSD you pretty much have CPS, but not the other way around.

I've visited the PN and MS forums. Now that I know I DON"T have MS I just have to focus on the pain. Unfortunately the symptoms are very close to MS. And I do have PN, just not "true" neuropathy (is what I"ve been told), even though he said if I did a biopsy it would show a little small fiber neuropathy.

It seems to me you are all in as much pain as I am, and probably get treated the same.

I was injured Nov 2011 by a chemical burn, neuropathy started by July 2012 and it's been downhill from there. I hurt all over, fatigue, brain fog, neuropathy feeling, a tremor in my right hand and more. I'm currently taking Oxcarbazepine (an anticonvulsant) instead of Gabapentin because that made me too stupid. The Oxcarb is working well. I forgot to take two in a row and man I felt it!! Taking Levothyroxine because my thyroid messed up after the trauma of surgery, taking both Wellbutrin and Zoloft, have taken B12, D, Magnesium, MMJ. No optiates because after my burn I got addicted to Percocet in a very short time with half what the doc said I should take. It was horrible!

I've seen the pain doc. She won't give me any opiates for breakthrough pain because I smoke MMJ. Tramadol doesn't work, it made me super sick when I tried it once. I'm very sensitive to many drugs. I was hoping for some non-opiate breakthrough pill but no luck. The pot works, but I work full time so I can only use it in the evenings. She suggested a neurostimulator. I got capcasian cream for my PN, which kind of works.

So... Saw the doc at UCSF this week. He dxed me with Chronic Pain Syndrome. Great, my brain is screwing up my body. He said one of the best things for me is exercise. But my feet and body hurt constantly, so it's a fight, I realize it's a viscous circle. My DD gets me out biking sometimes, but I really need a pool! I asked him about supplements and he suggested a multi-vitamin. I think specific supplements might do better?? Anybody find anything natural that helps with the pain?

Fatigue is really getting to me. Yesterday I had a migraine, came home from work, went to bed and slept all night until my alarm went off at 6am. It takes me three times as long as it should to do anything at all. Is there anything I can do for fatigue? I've read that the MS'ers are actually getting prescrips for things like Ritalin.

My guess is that the best thing for me is to not work, take the time to both rest and exercise, keep my stress down. I'm getting a settlement in a couple months so my goal is to take time off work, like a couple years. My PCP was ready to take me off work when I went in last. I just want to wait (and suffer) until my settlement is done so I can set my goals. Has taking time off work worked for anybody? At least to get the pain to a manageable level?

I want to join the gym for swimming, but it's $110 a month! I'm going to ask my doc for a prescrip and see if my insurance will cover it. I doubt it, but I guess it's worth trying.

Anything I should know, tips, etc, please let me know.
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