upper body symptoms with RLS/WED

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jstep
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Joined: Wed Nov 23, 2011 2:23 pm

upper body symptoms with RLS/WED

Post by jstep »

Can anyone who has experienced upper body symptoms with RLS/WED tell me what they are experiencing? I have been experiencing sensations in my arms, neck, and even face for a couple of weeks. I originally thought it was a side effect of Requip. But I am off Requip and am still experiencing these symptoms. The only oher med I have added recently is clonidine. A couple of days ago I was experiencing these sensations (sort of like heaviness and occasionlly tingling in arms, and face ( cheek area). I also felt a general anxiety and felt I had to move to do something. I have had some RlS/WED in my arms in the past, but never in the neck, face, etc. However, Requip did make IT worse in my legs, sleeping, everythng . I have realized that any movement I can do to the neck, upper body, even face makes it some better. It comes and goes, not every day and some days over the course of the day. It dawned on me that maybe this was RLS/WED moving to the upper body. Or am I jut freaking out because of sleep deprivation? Any help would be greatly appreciated. I have been reading as many posts as possible, and the more I read the more I am positive I have found the right place to receive help and hopefully in the future give help.
Jamie (jstep)

ViewsAskew
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Re: upper body symptoms with RLS/WED

Post by ViewsAskew »

Hi Jamie,

When I have WED in my arms, it's just like in my legs - an ungodly sensation that I'd do anything to stop! A few members get WED in torso, back and arms, so maybe they'll respond as to whether it's the same as in their legs.

I also get some kind of neuropathy in my lower arms and lower legs/feet- and it started when I took a dopamine agonist (Mirapex), but didn't stop when I stopped the drug. Over time, though (years), the neuropathy "stings" have decreased tremendously. I don't know if it's considered peripheral or small-fiber neuropathy. It's not just in fingers or toes, but into my calves and my lower arms. it definitely feels different from WED, but often occurs at the same time. It's more like a bee sting. The stinging sensation can set off WED.

We had a member here a few years ago that had WED and she thought it was also in her face. Turned out that she had small-fiber neuropathy plus WED. I also seem to recall that another member has been recently diagnosed with small fiber neuropathy....maybe search on that term?
Ann - Take what you need, leave the rest

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Polar Bear
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Re: upper body symptoms with RLS/WED

Post by Polar Bear »

Jamie, I have symptoms in my arms and would say that it feels the same as my legs.
Sometimes I have it in my arms, it can be both arms but usually it is mainly the right arm,
and it can be in my arms without having to be in my legs at the same time.

I also have some sort of neuropathy going on with legs,arms and hands,
the comment of viewsaskew regarding the 'stings' is a very good description.
It doesn't happen every day, it is very random, one sting, several stings in a row,
just once in the day, or several times a day. There is no pattern.
Betty
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jstep
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Re: upper body symptoms with RLS/WED

Post by jstep »

Thanks Ann, Polar Bear,

I do have the "bee stings in my legs and just assumed it was part of WED, it has worsened since taking Requip. My arms don't yet have the stings, but I do need to move them just like my legs. Not sure about the tingling and heaviness in my neck and face and sometimes arms. Ann, I will look up the neuropathy. I do know I feel a general restlessness when I am feeling these sensations which comes on about the same time. Thanks for your responses and help. I will continue reading and research.

Jamie

cornelia

Re: upper body symptoms with RLS/WED

Post by cornelia »

The stings happen to me too. Last year I was tested for neuropathy and the outcome was definately not. Sometimes these stings are the beginning of a RLS attack.

Before meds I used to have symptoms in the face quite often. Now only seldom. If they are relieved with movement it is RLS.

Corrie

jstep
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Re: upper body symptoms with RLS/WED

Post by jstep »

Thanks Corrie,

All of the new sensations started when I was on Requip which definitely made my legs worse. Most are relieved at least temporarily by some type of movement. My WED is not in control at this time, but hopefully will be in the near future.

Jamie

badnights
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Re: upper body symptoms with RLS/WED

Post by badnights »

it sounds like RLS/WED in your face, but who knows, there might be neurophaty there too. It's almost irrelevant if you have neuropahty with RLS - I mean, nice to know but not helpful in treatment - because the neuroptahy can't be treated; that's the impression I've gotten....?
Beth - Wishing you a restful sleep tonight
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rthom
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Re: upper body symptoms with RLS/WED

Post by rthom »

I have upperbody symptoms as well and my left arm is far worse than my right, (maybe from a previous injury weakening it) Any way it feels pretty much the same here except that in my legs it's more intense and i have it on the bottom of my feet but not at all in the hands it seems.. I don't get it. I also have it on my head--sometimes it's really bad on my ears and occasionally on my scalp. I do find my ears to be worse than my face though. I can't get it figured out.
I like the remark about how important it is to decide how much is neuropathy and how much is rls.

ViewsAskew
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Re: upper body symptoms with RLS/WED

Post by ViewsAskew »

Neuropathy - depending on what kind it is - can be treated. It depends on how bad it is as to whether you need treatments; they use several different classes including the same anti-convulsants that work for some of us. I believe that small fiber neuropathy with WED is much harder to treat because the drugs somehow conflict - but I can't remember how.
Ann - Take what you need, leave the rest

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rthom
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Re: upper body symptoms with RLS/WED

Post by rthom »

That's proof to me of how important this forum is, I would never have even considered following that up, as i'm just "tired of dealing with it" on a medical level. I don't want my life to revolve around it and sometimes is seems it has to.
thanks for adding that important tidbit.

rlsidaho
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Re: upper body symptoms with RLS/WED

Post by rlsidaho »

I am on day 12 of stopping my Requip XL cold-turkey. I have been on a DA for close to 6 years. I never had any symptoms in my upper body until 3 days ago when I felt it in my arms for the first time. It was the same "anxious, creepy crawly" feeling that I get in my legs and an urge to massage and rub my forearms.

I don't know if this is just par for the course when going through discontinuation withdrawals or not, but thought that I would chime in. Perhaps is has something to do with the DA leaving your system.

ViewsAskew
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Re: upper body symptoms with RLS/WED

Post by ViewsAskew »

That was the first time it happened to me, too. I think it's the heightened symptoms, but could be something else!

Unfortunately, they didn't stop in my arms after that.

Fortunately, over time, they've lessened tremendously in my arms and it rarely happens as long as I'm up on my medications.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

rthom
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Re: upper body symptoms with RLS/WED

Post by rthom »

what's the thought on the medications masking the worsening of symptoms. I've just always assumed that the sudden worsening wasn't sudden at all, but just that the symptoms have been masked by the meds. Thoughts?? :problem:

ViewsAskew
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Re: upper body symptoms with RLS/WED

Post by ViewsAskew »

rthom wrote:what's the thought on the medications masking the worsening of symptoms. I've just always assumed that the sudden worsening wasn't sudden at all, but just that the symptoms have been masked by the meds. Thoughts?? :problem:


rthom, here are my thoughts. Medication can mask symptoms when it's being used for something else. Taking opioids for pain, for example, will mask symptoms. So, in that case, people might find their symptoms appear to suddenly be worse either when they stop the medication, of over time if it's simply worsened to the point the medication can't cover it anymore.

In the discussion above, we were taking about a sudden worsening as applies to augmentation. I've also read of people who have sudden worsening when something else is involved, such as secondary WED. In augmentation, it is indeed sudden - no question. I went from zero symptoms on a weekly basis (only once or twice a month for a short period) to nightly symptoms within 1 week. I was taking the drug for PLMs, not WED. But, I had WED daily within just one week.

In my experience, medication has never masked increased symptoms for very long, if at all, when I was medicated properly. I suppose it might if a person was taking more medication than needed in the first place...or if the increase was very mild so it was covered initially.

As an aside, one of the important rules to treatment seems to be to never take more than needed when treating WED. With the dopamine agonists, it may contribute to augmentation, and certainly to increased side effects. With opioids, it contributes to tolerance. Some of us seem to get tolerance quite easily, others not at all. Not sure why, but according to one expert, as I understand it, if you just barely mask your symptoms, even allow for a little breakthough, it's rare to get tolerance on an opioid. When you cover them 100%, then the risk for tolerance increases. I don't know by how much. We have people here who've been on the same opioid dose for years. Others, like me, get tolerance as fast as 6 months; the longest I went without tolerance was 8 or 9 months.

Per your thoughts, when my symptoms are worse, I know it immediately. As a female, I usually have worsened WED about 7-10 days a month before/during my period. The medication never covers it and I always have less sleep during those days. I can immediately tell when the symptoms are back to "normal."

I'm a bit scattered here, but I also just thought of another thing. Seems to be that most of us can pretty easily tell that it's getting worse a bit by bit over time. The meds may cover it at first; the next thing we notice is that it's worse once in awhile. Or starts just a bit earlier. Over time, that increases until it's clear that it's worse. But, I don't think most of us would consider it sudden.

And, I think that's the difference with augmentation. It can take many months for the WED to notch up another level with normal progression. With augmentation, you hit the next level or even the one after that within a few days.

Be interesting to hear what others think.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

rthom
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Re: upper body symptoms with RLS/WED

Post by rthom »

Thanks and yes i agree on the augmentation things as well, (should have actually started this question as a different topic)
I was referring to the meds like sleep and opiods--as is often given together. If someone is routinely medicated to sleep it may seem like it just appears to be worse out of the blue but in fact it was there all along creeping up--much like what you were pointing out i think.

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