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Post by rav »

Hi - I'm new to and just recently discovered that this problem I've had since I was 17 may be RLS. (I'm 35 now.) I haven't seen a doctor, so this is just my guess.

It's not just in my legs, and it's not painful. But it is an "irresistable" urge to flex or stretch my muscles. It's all over - legs, ankles, arms, wrists, back, neck, hands, fingers, feet, toes - you name it. I can try to ignore it for awhile, but usually can't last longer than 10 seconds before I have to do something.

It's usually worst in the evening and when I go to bed, but it also happens in the morning when I'm getting ready for work, when I'm sitting at my desk, when I'm standing or sitting anywhere for awhile. Flexing or stretching my muscles makes it feel better, but when the "attack" is bad, the "feeling" comes back almost immediately.

I didn't recognize it as possible RLS before, because usual descriptions don't describe it - no creeping or feeling like there are bugs in my legs or anything like that - but if I try to ignore it, my muscles do feel extremely restless. And of course, the more I think about it, the worse it gets! (So right now it's driving me crazy.)

I remember the first time it happened, so clearly even though it was 18 years ago. I was sitting in a classroom talking with a bunch of friends, and all of a sudden my muscles went crazy. I had to start flexing and stretching them - I think it was just in my arms and legs - and it completely freaked me out. It happened pretty infrequently back then, but has gotten progressively worse over the years.

So, here's my background - I have ADD, diagnosed when I was 32 years old. (I still wonder sometimes if it isn't just sleep deprivation, but who knows.) I never took any type of psychotropic medication before three years ago. Since then, I've been on adderall, strattera, vyvanse, wellbutrin, and celexa for anxiety/depression. I suppose I could say it's gotten worse since I started taking these medications, but then again life has gotten more stressful since then, too.

Just wondering if anyone else has this, too - just affecting the muscles, and all over the body. And also - what can a doctor do for me, anyway? It's irritating as heck, but I've functioned for years without doing anything about it. And the last thing in the world I want is one more psychotropic medication. (I didn't realize this was considered a neurological disorder until I found this site.) I'd do anything to get off what I'm on already!


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Post by ViewsAskew »

Hi Rav,

Sorry you had to find us.

There are 4 criteria for RLS. Maybe you have seen them? In case you haven't....

1. The urge to move the limbs. (and yes, RLS can be pretty much anywhere, though it often starts in the legs first, then migrates over time) Notice that this is simply an URGE. This urge is most often accompanied by a feeling, but it doesn't have to be. I have a feeling. It's like electricity in my muscles. Some people have a painful feeling, others yet something else. But whether we have a feeling or not or if the feeling is the same or different from others, we all MUST MOVE.

2. It's worse in the evening. That doesn't mean it can't be all day long, just that it's worse at night. There is a circadian component to this.

3. It's worse at rest. Better to say is that it's worse when we're relaxed and not concentrating on something. That's usually around bed time, but can also be when we stop to watch a bit of TV, read a book, or cuddle with someone.

4. Moving makes it go away. Again, whether it hurts or not, or has a feeling or not, that NEED to move goes away when we move.

I'm guessing that you would fit all those.

Now, you mentioned ADD....both ADD (and ADHD) and RLS involve dopamine. So, who knows if they are involved in some way...some experts think that at least some cases of childhood ADD may be RLS. But, the research is not conclusive yet.

What can they do? Well, it's possible that you're taking the wrong type of drugs and that you're right - this is about sleep deprivation, not ADD. Or that they are entwined in some way, but that treating the sleep part would have a better total effect.

If you assume that it's related to sleep and that this need to move is preventing you from sleeping, then you have to decide if you want to try anything at all.

I think there is a pretty exhaustive list of what to try in the "sticky" post in this section about Managing RLS. You might want to check it out and see what you 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.

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Post by Sojourner »

r, Another welcome. I guess I would ask if the doc who is treating you for your ADD is familiar with RLS. I use the word familiar in a general way. I agree with Ann that your symptoms sound like RLS. But, because of your ADD it would be important that your treatment provider is knowledgeable about both RLS and ADD. Otherwise, any additional treatment(s) may not be helpful. Read some in the Special Population forums. Best wishes, M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

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Post by mackjergens »

You might wish to go to www.wemove and see the list of movement disorders listed and spend a little time reading about each one, to see any of them fits your symptoms.

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