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Restless Leg Syndrome Community
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Avatar universal

RLS in your wrists/hands?

My doctor has never heard of this before, but I get the same sensations in my arms...mostly my hands and wrists, as I do with RLS.  I have RLS pretty bad and Im on 3 Ropinerole per day.  On dialysis days I take 2 in the am and 1 at night, and on non-dialysis days I take 1 in the am and 2 at night.  Ive had to keep upping the dosage every couple of weeks.  Im so damn frustrated.  Cant sleep, have a hard time sitting for 4 hours while on dialysis.  Im sooo tired.  I'll go to bed, not feel the RLS kicking in, but when I lie down my wrists start up.  I have some leftover Lydocaine which I used to use on my arm for dialysis (to avoid pain from the huge needles they use), that I put on my wrists and hands and it seems to help some days.  I was just wondering if anyone at all, has this problem in their wrists and hands or am I a fricken mutant?  lol
11 Responses
Avatar universal
I have no opinion on your mutant status, but I've had it in my arms before.
Avatar universal
So......I COULD BE a mutant??? *lookofsheerterror* ;-)
Avatar universal
I'll leave that assessment up to you, but I think that as long as you haven't had any alien visitations, you are probably fine.
Avatar universal
I think the thing that links RLS and fibromyalgia is that both conditions are secondary to sytemic inflammation.  
Avatar universal
Your the first person I've heard of other than myself, that I have heard of with these RLS sensations in their arms and hands. Only once in a while I experience that and it is very nerve wrecking when my legs and arms and hands(wrists) have me jumping. I did good without any problems from all three for several years. Then suddenly starting almost two years ago it started back. I'm not sure why. I never seen a doctor for it, though my RLS started when I was a child. It was something I taught myself how to manage eventually. Sometimes successful sometimes not. My arms and hands I don't think started up until my twenties. But I'm very curious now too if it is part of RLS. Because it really does feels like it. For me I would maneuver my arm to alleviate that feeling,shaking my hands and rotating my wrists would usually be my reactions. Sometimes it was only in my arms and hands(wrists). I don't want to take medication for it. Last couple years I began to notice all three occurs when I'm very dehydrated plus lack of restful sleep and body aches. But once I'm doing all I need to rehydrate,  and get some much needed rest in a matter of few days or week it all stops. Just a personal observation that seemed to work for me.So far.But I understand your experience and I pray you've been able to find some relief since your post.
Avatar universal
I've had a lot of success with diet.  I hardly have any RLS symptoms at all now, even in my legs, and even at night.  The key has been in finding a way of eating that reduces systemic inflammation.  Good luck to both of you.
Avatar universal
The increase in your rls symptons, which includes a progression of the illness to include your upper limbs and even your torso, may be the result of augmentation.  This occurs in a very high percentage of rls sufferers who take dopmanergic agents.  The drugs used primarily in the treatment of parkinsons's disease.

Personally, having had RLS for 40 years, I have used every medication and modality known.  I had to increase ropinerol, requip, carbadopa/levadopa until augmentation made it impossible to continue.

Augmentation is a worsening of symptoms with one or more of the following features:  an advance of the typical time of day when symptoms begin to 2 or more hours earlier than before the start of treatment, a spread of restlessness from the legs to the arms and/or trunk, a shorter interval before symptoms start after sitting or lying in a restful position.

The willis-ekbom foundation (rls foundation) has a WEDRLS bulletin: A publication for healthcare providers.  As a member I received mine free, however I purchased additional copies at $10 for each of my three sisters and mother to give to their DRs.  It is amazing how many docs know nothing to very little about RLS.  They also have a number of publications for suffers.  I also receive a seasonal bulletin "nightwalkers" which keeps me current on treatments etc.

FYI the actual cause of Primary RLS is unknown, however it is genetic and  not related to fibromyalgia or any autoimmune disorders.  Secondary RLS is caused by things like iron or magnesium deficiency and once the deficiency is treated the illness will subside.

I hope this information is helpful.  kim
Avatar universal
You likely have secondary RLS which usually responds to dietary and lifestyle changes like increasing iron or magnesium, eliminating caffiene, establishing a regular bedtime routine etc.  I'm sure you realize hoe very fortunate to have control of your RLS.  It can be debilitating when nothing helps and one is forced to take medications with unwanted side effects.  I personally hate it!!!!!!!
Avatar universal
It appears that my response  (beginning:The increase in your rls symptons)  to your inquiry is under skydnsr.  I have not got the hang of this yet... forgive me
Avatar universal
I had to think for a long time about how to respond to this and even whether to respond at all.  Here is what I have decided to say.

In fact, I was thoroughly worked up by a board-certified sleep medicine specialist and was found to have primary RLS.  To take the point of view that, if anything but medication relieves RLS symptoms, then the person couldn't have had "true" RLS is a fallacy, similar to the No True Scotsman fallacy:  

"Every Scotsman eats porridge."

Well, I know a Scotsman who doesn't eat porridge."

"Oh, then he's not a true Scotsman!"

By that reasoning, only people who have intractable RLS have primary or "true" RLS, and that is a notion with which I must respectfully disagree.

Cutting-edge information is available about the connection between systemic inflammation and RLS.  This information, for whatever reason, is disregarded by the Willis-Ekbom Foundation.  I have done my own reading on the matter and am satisfied that the inflammation hypothesis is based on science.  I now know that it offers a ray of hope for at least some individuals.  

In my case, an anti-inflammatory diet has given me life-changing relief. from symptoms of RLS.  It costs nothing more than the price of the food that one eats, it has no side effects, and it does not require a prescription.  If the diet were to fail, a person could always go back to a pharmaceutical protocol. It is a very healthy diet, in any case, so it is hard to see any downside.

That is really all that I have to say about this, unless somebody wants to know how to go about reducing systemic inflammation by means of diet. In that case, I am willing to try to help by providing additional information.  I'm not going to defend this plan or argue about it.  I only mean to offer hope and help.


Avatar universal
Hi,
I'm new here....I can totally relate!!! I get it in my arms, wrists and shoulders.
I have been on Requip 1 mg for a couple of years, saved my life....last few weeks seems to not be working anymore. I am getting so depressed from no sleep and just can't figure out what to do. Did you see a Neurologist for your sx or your regular doctor. I just don't know what to do.!
TY
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