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 02-24-2015, 07:53 PM #14
LIT LOVE LIT LOVE is offline
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Join Date: Mar 2010
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LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
15 yr Member
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Those terrifying pics are the worst case scenario and are a very small percentage of cases. --So the rarest of the rare.

You won't experience every symptom, all the time. They might come and go to varying degrees. It's also difficult to measure the amount of swelling with the naked eye. I can tell when my wrist and hand swells, but in order for my therapist to document it (especially since I didn't want to be touched there) he used water displacement to measure swelling after certain activities.

You might want to ask for a rx with Melatonin. Ideally, you'll find a drug combo that will reduce (but may not eliminate) your pain to a degree to make sleep easier. I was on Ambien and never felt rested, but with the Melatonin (sorry I don't remember the name) I did! Others things that can help are taking a warm bath with Epsom salts shortly before bed and try exploring music designed to help aid you falling asleep--both helped me.

You're with a therapist that is clueless. If she is unwilling to learn about RSD/CRPS, than it is time to find a new therapist. I hope she is not attempting to put any ice on you? That's a great way to cause additional nerve damage. And I could not handle certain therapists touching me while working on me, while others were tolerable. Too light of touch is excruciating and too rough is as well. Stim was not an option! You might consider pt in warm water if you have that option locally.

One of my pt was disabled herself. She had MS and was in a wheelchair, but pain free. It helped that she validated that what I was going through was something she wouldn't have wanted to deal with. You've unfortunately had the experience of both a disability that you can't hide and now a disability that is invisible. If you unable to return to work, you might consider applying for SSDI. IMO, you should qualify with a Listed Impairment because of your combination of disabilities and should (in theory!) be approved within a fairly short period.

Don't give up hope that your current doc (or perhaps if needed a new doc) might be able to put this in remission for you. Some people respond well to stellate ganglion blocks, others don't. There's also ketamine infusions, and new meds and advances happening all the time, etc.
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