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 06-13-2007, 10:12 PM #1
nikmcjo nikmcjo is offline
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Unhappy Please help!

Please help. I am really scared and in tears over it. Okay. Sunday night my right hand like stopped working. I could just move my thumb and my wrist a little. The next day I woke up and could move my hand but 30 minutes later it was still again along with thumb and wrist and I'm scared of not having any function in it. We're seeing the dr Friday but we dont know how much more he can do and mom wants too see Dr Sherry in Pennsylvania but I DONT!!!!!!!!!!!!!! Does anyone know what it could be? It isnt pain preventing me from moving it and it is really swollen. The same thing happened to all 5of my toes on my right foot. And now I'm starting to get a lot of muscle spasms which really hurt. I'm starting to think I might have fibromyalgia too. Does that cause this to happen? Does anybody know. If not that, anything else?



Thanks guys.

Nikki
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Old 06-13-2007, 10:53 PM #2
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I would NOT wait for the appt on Friday. The ER should be able to give you some advice on what could be causing this and then you could take this info to your appt on Friday.

Plus it sounds like this is something you should check out immediately. Keep us informed. Hugs.
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Old 06-13-2007, 11:29 PM #3
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That happened to me too, once upon a time (about eight years ago, to the best of my nonexistant mathematical ability). It was really scary, I remember. I couldn't move my hand really at all for about six to eight months. It was always a little looser in the morning (same for my leg, actually), but after a few minutes or an hour, it would be back to square one.

I guess I don't have much advice for you. My hand got better with lots of aggressive treatment, and I actually have no problems with it at all anymore. The inability to move my hand was part of the whole RSD movement disorders thing, and wasn't because of pain. I remember thinking that calling RSD a "pain syndrome" is a crock of...(don't want to get into trouble for posting the word I'm thinking).

Oh, if you can possibly keep your arm elevated, you should try to do so. The swelling won't help your inability to move. I always found that I had some more movement in my hand in the mornings because I kept it on my pillow at night, which took some of the swelling down.

I'm sorry that your mom wants you to see Dr. Sherry. I hope that you can convince her that you need to play a large role in the decision making process about your treatment. I ended up seeing doctors I didn't want to see because my parents denied me that role. It wasn't quite as bad as I imagined it would be, in retrospect. But it wasn't exactly a lot of fun either.

Oh, and fibromyalgia does not cause any part of the body to stop working. RSD does. Fibromyalgia is basically all-over muscle and connective tissue pain with severe fatigue. It's really common for anyone with a chronic condition (including RSD) to develop fibromyalgia as well. Rest assured that while it's painful and not fun, it's not progressive and won't cause any physical deformities.. Wish we could say the same about RSD.

So...this post may have been somewhat pointless, except to say that I've been there and lived through it. I hope you feel better soon!

-Betsy

Last edited by betsyherm; 06-13-2007 at 11:36 PM. Reason: bit about FMS and elevation
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Old 06-14-2007, 03:28 AM #4
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Hi Nikki, I am sorry to hear you are going through all this. My prayers are with you.

I agree with Betsy. It's important that you play a vital role in your own treatment and decisions. Whether it's your parents or some insurance company, no one likes being told they have to see a dr. that they are uncomfortable with. I went through it for many years while fighting Work Comp. It is much emotional and stressful (great for us rsd'ers ) on the patient.

I know that, as a teen, it's hard to talk to your folks sometimes, especially when what you want is more power, lol. You really need to hash this out with your Mom, though, and soon. My one suggestion is that you make sure you approach her in a calm and logical manner. Ask her to sit and talk with you, when the two of you have some quiet time at home. It's hard to do, but she'll respect you much more in the end. The one thing you do NOT want to do is keep this all bottled up inside, and then blast her with it in the middle of some drama at the dr.s office! She'll be very embarrassed, and a lot less willing to listen to you or see things from your point of view.

Best of luck, hon, and keep us posted.
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Old 06-14-2007, 08:53 AM #5
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Thanks bunches

To reply to you guys:
We hate the er. They never know what to do for rsd the 6 times Ive been there.

Betsy, thank you. I was kinda hoping it wasnt fibro.

Rogue, I will let my mom know if it gets to be that far. Right now the clinic is up in the air. Hopefully it stays up there.

Another question

Does the rsd does that cause abnormal postures of limbs? My wrist is crooked and my fingers are twisted up and almost in a fist and kinda drawn in a little. Toes arent curled under, but they arent in normal positions. Not too worried about them bc they dont affect me too much.
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Old 06-14-2007, 01:05 PM #6
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Heya

Do you mean that your arm has gone into spasm and locked? I have this in most of my joints - it's like the hand is really tight and you can't move it or the fingers. You hand forms a fist and then the wrist moves as well?

If thats what you have then stretching will pull it out - the chiropractor I used to see suggested twisting the joint into the spasm to help release it - doesn't work with all my joints but does with some of them. if you fingers are really tight then put something like a bandage in the hand to try and stretch the muscles out and try to move the hand in hot water. Have any of your drs suggested muscle relaxants? Also magnesium and quinine are supposed to help as well - so try drinking soda water.

You are not going insane and that wouldn't be caused by fibro.

Hope this helps reassure you abit!! hang on in there and keep moving it, even if it is just passively and try and move it with heat.

Love

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