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

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.

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

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.
Rogue

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.

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

Frogga xxxxxxxxxxx

Umm, well I was just sitting on the couch one night and I just tried moving it without success. It has full passive range of motion, but not active. I dont think it was a spasm.

Usually I would feel a deep tingling pain in my hand before it would cramp up but stretching would solve that problem. This time, I didnt feel numbness or spasms or anything but it wouldnt budge and it was more stiff than when cramped up. It was originally affecting all but my thumb and a little of my index finger but the next day (Monday) it was whole hand and wrist. And now it is very weak and has even less active range. So I dont know. I "think" it might have just started out as a cramp but then had a spasm and locked but I dont know.

It is like a fist, yes. Now without any active movement of the 5 fingers or wrist. They are doing stretching. So far, nothing but we'll see.

I am starting to have muscle spasms in that hand now I believe. My ring and pinky finger (and sometimes the others) will just ache and tremble for awhile.

Oh, and yes Frogga. My mom suggested to my dr about a muscle relaxer. I hope he prescribes me one.If not, my mom is a nurse and knows what to do

And I talked to my mom about the Pennsylvania clinic. She said she just wants a second opinion on this since he says he's "the" specialist. I dont like dr Sherry btw. She said maybe he can figure out whats wrong with it. My mom just feels that my ortho is still really confused which I agree. She said we are taking a vacation up to ny anyways so we would just go by one day and see what he says. Im trying hard to find someone nearby that knows about rsd and can help.

Just so upset and stressed. They are ending my pt soon and I am not ready physically to be discharged. I still scream each time I go and still hate to be touched. And now with my hand like it is....And dr not knowing what to do bc girl before me had nearly perfect recovery although her rsd was just in her left ankle and he didnt think rsd could get any worse than hers. Everything just seems to be getting worse and worse and although my rsd is getting better, it is still progressing to stage 3.

Sorry about all the coplaining. I just had to get that all off my chest. I feel better now. Thanks

Ok, hand still immoble

Anyways, my ortho recomended I see a pediatric neurologist and/or go see dr sherry. i picked neurologist and mom picked sherry. and mom emailed sherry. He said that there are many other kids struggling with this so the wait to see him is long. But have my ortho order pt (which we did 4 almost 5 ******* months ago) and maybe they can obtain the video (wich they obtained and it worked for the previous patient....and they are doing the same ******* stuff with me which is obviously not working since the "2 week" program has changed to 4 **** month program) and to follow it and you will be running in no time. And the duration of the symptoms does not affect the eventual good outcome. Yahh, if the "brillant" dr read the email we sent saying the symptoms are getting worse and we are experiencing NEW and worse symptoms, he might get the point we are trying to reach. My dad is like "Great! That is so encouraging to hear!" with the email but to me, I hate the email and dr sherry. He doesnt want me going up to the clinic (not that I wanted to go). And now my right foot is starting to give out on me and stop moving as my hand is so I am back a crutch bc of the dizziness and I feel so afraid Im gonna fall. W/o the crutch, I run into everywall.

And Im supposed to be discharged from therapy in 2 DAYSwithout the use of a hand and a foot.

Erg.

Heya,

I can understand your frustration and your fear!! I hate it when the RSD does this sort of thing. I have been lucky that I am under a really good neurologist and I have botox and strong muscle relaxants (diazipam, benzhexol and botox). My RSD led to me developing dystonia where my joints lock and twist and I lose the voluntary use of my limbs. Does hot water/ wax help with movement/ stretches? Have you tried mirror therapy - it is supposed to be very useful for RSD/ dystonia. It is a new therapy which is just starting in the UK. It sounds like you might be able to benefit from it? (and it's something you can do on your own without a physio). I also have splints I wear/ bandages that go in my hand to reduce the contractures. Oh, also, I have been told that RSD affects your ability to pre know a movement - so you will apparently move better if you think through the movement you want to do *apparently this is in line with the mirror thing*.

Good luck and I hope things get sorted for you. Are you glad you don't have to go to Dr Sherry's clinic?

Love

Frogga xxxxxx

Have you tried mirror therapy - it is supposed to be very useful for RSD/ dystonia. It is a new therapy which is just starting in the UK. It sounds like you might be able to benefit from it? (and it's something you can do on your own without a physio). Hi ya Frogga! I'm interested in you explaining how "mirror therapy" works?? can you tell me more about this, love?? thanks in advance, Frogga! Love, Desi