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 08-09-2012, 12:41 AM #6
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Vrae Vrae is offline
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Vrae Vrae is offline
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Join Date: Apr 2011
Location: Denver
Posts: 703
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I feel for and identify with your situation. It does sound like it’s spreading. For me, after a while, it was clear that it was RSD spreading. Same inherent symptoms. Oh those blurry eyes, they do suck. Glasses don’t even help at times. I often have to crank my zoom on my screen and it’s still blurry. I never had vision problems before RSD. The meds can make it worse too.

Losing your former self to this condition is a rough process. I still struggle with that and I’m 8 years in. to say that it is frustrating would be an understatement. As for driving, if you can’t… don’t. and only you know when to say, I can’t. But I will say this, it has caught me off guard too. Mine is everywhere but prominent from the waist down. I have been driving when all of the sudden BAM! My foot/leg (s) is in what feels an electric storm. Pushing on the brake is the worst. I’ve been in traffic and all the sudden, I have to try and drive with my left foot and I look like to other drivers like I just got my license or something. I’m not good at it. The upswing… kick *** parking ) In jest, my husband said he married me for my parking ) lol. Lord knows I/we try to keep a sense of humor. It is tough at times, but it does help.

Insurance, I’m with ya hon. Lost my b/c of the $1k premiums could no longer fit into our budget and still eat. I get what you’re saying about the docs. I tried to see some on a cash basis that flat turned me down. Not even knowing anything about my income (or lack thereof) they said “you can’t afford it”. I am about to try to get SSDI. I pray that I will as it seems to be the only option left. I have been rationing pain meds for a while now, and have a PC doc that gives me Neurontin. Thank God for that drug. But the pain meds are just as necessary, and so difficult to obtain without insurance. I had a PM doc once upon a time, and I sure wish I could see him now. I too had lots of tremors as it spread and progressed, and still have them from time to time, but the Neurontin sure helps keep them at bay. Catra121 is right, you gotta try and keep moving as much as you can, and yet know when to stop.

Hang in there luv…
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