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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)

muscle wasting out of control!

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Unread 11-16-2012, 09:32 AM   #1
debbiehub
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Default muscle wasting out of control!

i just dont know what to do. i feel like i have muscular dysrophy. Full body muscle wasting from the spread of rsd. i try to work out in the pool. recently lost ability to swim..so sad. when I do push myself in the pool. the pain later in the day is unreal! feeling such despair.

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Unread 11-16-2012, 04:15 PM   #2
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I woke up this morning and could barely sit up in bed. I was miserable trying to stand up....but I had to use the bathroom.

Right now I feel like a ragdoll. My neck is so sore that I can barely keep my head on straight, it wants to bounce to one side or the other.

I'm sitting in a recliner right now hoping my legs build up some strength so I don't fall on my nose.

I wish you the best and hope you feel better soon.
<------ gentle hugs!!
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Unread 11-17-2012, 02:11 PM   #3
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I understand what you mean by feeling like you have muscular dystrophy. My legs have decided they don't want to work. I've almost fallen countless times...thankfully I've managed to catch myself by dancing around with my cane. Forget pole dancing...I do cane dancing!!
But seriously, I really don't know what I'm gonna do. My left hand/wrist can't bear any weight, so crutches or a walker is out of the question. I don't have (or have the money for) a wheelchair, nor could I get around in a regular one by myself.
My doctor increased my gabapentin to 400mg twice a day for a week then I go up to 800mg twice a day. Then I take Xyrem at night.

Oh and let's not forget the muscle spasms! What do you guys do? I could use some suggestions.
Oh and the TV is reflecting in the skin on my leg!!

I so hope and pray you guys start feeling better!!
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Unread 11-17-2012, 10:16 PM   #4
Morgan Herritage
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The only thing that helped my spams were cortisone injections in my wrist joint. But my rsd started spreading to where the injection sites were so my doctor stopped that. I would almost take the spread because the spasms hurt so bad. I don't take meds for it (personal preference.) But I try to move my body any way I can. Just walking every day gives some mental and physical optimism.
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Unread 11-20-2012, 11:23 AM   #5
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The hard part for me is getting in the pool.

I mostly just stretch and try to divert my attention. Some days I'll work out a little and some not.

Hang in there. Keep doing as much as you can as often as you can.

Good luck.
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