Is it not???

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Momo
Posts: 58
Joined: Sat Jun 21, 2008 12:18 am
Location: NH, United States

Is it not???

Post by Momo »

i'm starting to wonder if i dont have rls, but something else. because sometimes i get symptoms that i dont hear other people mention. and my symptoms are nto just in my legs, but in my arms - badly. and its not itchy, or pully. i mean, it use to be, and on occasion when its mild it is. but mainly its just pain. and its almost always. and soemtimes i feel weak like i can't grasp things or stand, but is not constant, infact i have never had this weakness while at the doctors. is it possible that i dont have rls??? is there anything that could make me liek this besides rls???
Never go to a doctor whose office plants have died.

Sojourner
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Post by Sojourner »

M, Very few docs here. But, as you probably know, many of our members are afflicted by more than one condition. A visit to the Special Population Forum will be helpful in that respect. The best thing to do is share your symptoms with your doc and ask the question you have just asked. Ask if he would recommend additional evaluations. I haven't reread all your other posts but try to keep a diary of these new symptoms with fairly good detail. That will be helpful in meeting with your doc. As you know we have members who experience RLS in all parts of thier bodies. Pain is certainly not an uncommon symptom. One of the big things with respect to an rls diagnosis is that movement tends to make whatever your symptoms are better. Does movement help these "newer" symptoms. I have arthritis and it is painful. However, move does help the arthritis and the pain from the arthritis is different than the pain from rls. At least I can differentiate that about 90% of the time. But, I got to tell you there are some nights when I can't tell which is which particularly if the weather is up to something. Anyway, talking to or seeing a good neurologist and having a complete physical with a comprehensive blood panel may be things your doc will consider for you. But, just as we recommend you advocate for yourself with respect to rls, do the same with any new or troubling symptoms.

Best wishes,

M.
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ViewsAskew
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Post by ViewsAskew »

Momo, I always go back to the very beginning when I start to question things.

In this case, it's the RLS criteria.

When you have these feelings (pain, weakness), does moving around help?

It's possible that, as Sojourner noted, there is more than one thing going on. That definitely can make it hard for a doctor to diagnose.

Do you have ANY other odd things going on? Food issues? Headaches? Odd sensations anywhere? etc.

As Sojourner said, it's getting the attention of your doc to see all of it that's important. He needs to know and take you seriously. And, sometimes that is really hard.

I wish more doctors would do the following, but they don't. It seems to me that opioids work for most of us if we aren't allergic. So, why not try a small dose of them (which is how most of us find out they work - we get them for something else) and see in cases like this, where the symptoms just aren't so clear-cut.

I am sure others remember Em. She hasn't been here in a long time, but she has symptoms all over, including all over her face. She tried Mirapex and it made it worse. She was afraid to try things. She couldn't get her doctor to listen. This feeling wouldn't go away and she was having so many difficulties.

Eventually, she got a doctor to help her with opioids. They didn't work very well. They dented it, but she needed doses MUCH higher than the rest of us. That started the search for something else. They eventually determined she had a TWO things going on at the same time. One was RLS and one was a different disorder that also caused odd tingling sensations. She couldn't tell them apart initially, so thought it was all RLS, as did her doctor.

On the other hand, we have people here for whom pain is the primary symptom. They don't have itching or pulling or tingling or electrical sensations. And, some people have NO sensations at all...they just need to move.

That's why I asked the first question: does moving help? Because that, underlying it all, is probably the thing that is the most similar between us. Moving helps.
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.

Neco
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Post by Neco »

The thing with the weakness... I don't know. I can't recall anyone here personally, that complained of weakness especially with grasping things.

You definitely need to tell your doctor about that. It's possible you may have more than one condition, but better to find out if its nothing than to constantly worry about it.

I have RLS in my legs, arms, and ocassionally in my back around my spine. So you are not alone with symptoms being in other parts of your body.

Aiken
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Joined: Thu Jul 14, 2005 6:53 am

Post by Aiken »

I agree. Please tell your doctor about the weakness. It could be from one of the meds you've tried, or it may be an indicator that what you have is either masquerading as RLS, or is not just RLS. Either way, you need your doctor to know so he can adjust your treatment to accommodate this new factor. It could be very important.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

runner1
Posts: 16
Joined: Sat Oct 25, 2008 11:14 pm
Location: England

Post by runner1 »

hi momo,

I get really bad rls symptoms in my arm,if i've had a bad night my arm can feel quite weak the next day and very painfull.I know it's the rls as if i shake my arm round(when no one's looking)it can feel ok for a couple of mins but then the urge to move comes back.

Do see your doc about the weakness tho as i did have other tests to rule out other disorders.
michelle

Momo
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Joined: Sat Jun 21, 2008 12:18 am
Location: NH, United States

Post by Momo »

yea moving it doesnt really help, although i do it anyways.
Never go to a doctor whose office plants have died.

ViewsAskew
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Post by ViewsAskew »

If moving doesn't help, then definitely get back to the doctor. Like a few people have already said, between the weakness and that the moving doesn't help, it's something the doctor needs to know.
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.

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