New Member--Do I Have RLS?

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
SnappyK
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New Member--Do I Have RLS?

Postby SnappyK » Sun Apr 26, 2015 7:02 pm

Hello, and thanks for having this board! Regarding my subject, I know, I know, I need to see a doctor, but I'm trying to educate myself as much as possible in the meantime, in part so I can figure out what type of doctor I should see (family doctor? neurologist? RLS specialist?)

I am a 42-year-old woman who has been having mild symptoms for a few months. In the evenings when at rest (sitting on the couch), I have this urge to move my legs. My legs feel uncomfortable and shifting them around helps, and getting up and walking gets rid of the sensation completely. Last week things took a turn for the worse and instead of just having discomfort, I either have pain or burning sensations in both thighs and both calves; occasionally it feels like something is crawling around inside my legs. The pain starts around 1 or 2 pm while I am sitting. Shifting my legs around sometimes reduces the pain but not for long. Walking is the only thing that makes the pain go away. Last night I started getting twitches that made one or both legs jump up into the air. Repositioning lessened the twitches. I also tried a heating pad last night and while it seemed to provide a little relief, it only helped the part of the leg being touched by the heating pad; for example, it doesn't wrap the whole way around my calf, so only the part of the calf that was getting heat felt any relief.

What I'm confused about is that I don't have any problems overnight. When I get up to go to bed at 10 or 11 pm, the leg pain goes away (because I am walking) and it doesn't come back until the following afternoon. I have always "slept like the dead" and nothing bothers me, so if I am kicking or twitching in my sleep, I wouldn't have a clue.

Is it possible to have RLS without any late night symptoms?

Polar Bear
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Re: New Member--Do I Have RLS?

Postby Polar Bear » Mon Apr 27, 2015 7:14 pm

If you are getting to sleep and not waking up, that's excellent. Many of us find that the symptoms prevent us resting long enough to get to sleep and we can't stay in bed but have to get up and get walking.

If you have symptoms during the day, when do the symptoms cease.
Are you walking off the symptoms before sleep time and then managing to get to sleep before they kick in again? It's great if that is working for you.
I
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

SnappyK
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Joined: Sun Apr 26, 2015 6:25 pm

Re: New Member--Do I Have RLS?

Postby SnappyK » Wed Apr 29, 2015 11:31 pm

All I keep hearing about RLS is that it causes sleeplessness, and that's one thing I haven't experienced. The symptoms start mid-afternoon and last until I go to bed at 10 or 11 pm. The symptoms do not seem to occur when I am in bed, only when I am sitting. Between 2 and 11 pm, if I lay down, the pain goes away. Of course, that makes it kind of hard to work! But it does provide relief from the pain.

Rustsmith
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Re: New Member--Do I Have RLS?

Postby Rustsmith » Thu Apr 30, 2015 3:16 am

First, you should understand that all of us experience RLS in slightly different ways. For some it occurs only in the legs, others have it in the arms or torso. A trigger for one person can have not effect upon another person. So far that have been six genes identified with the hereditary form of RLS that are in addition to the forms that occur with kidney failure and in pregnancies.

Insomnia is not a requirement for RLS, especially in the milder forms. However, insomnia so frequently accompanies the restless legs that current research may show that it is a second aspect of the disease.

The requirements is currently identified are:

Urge to move, especially the legs but can be other parts of the body
Rest induces the problem. This can be sitting for extended periods or going to bed
Gets better with activity, as in getting up and moving around resolves the urges until movement stops
Evening and nights are more likely to cause problems
Solely not accounted for by another medical or behavioral condition

So, it sounds like you meet most of those criteria, but you should consult with a doctor to judge on the last one.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Polar Bear
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Re: New Member--Do I Have RLS?

Postby Polar Bear » Thu Apr 30, 2015 9:49 am

It does sound strange that your symptoms disappear when you lie down, this is normally such a trigger.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

SnappyK
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Re: New Member--Do I Have RLS?

Postby SnappyK » Thu Apr 30, 2015 6:43 pm

Rustsmith and Polar Bear, thanks for your replies. Rustsmith, I do fit the criteria that you gave, other than the last one. I am seeing my doctor tomorrow to get a physical, bloodwork, etc. and start the process of diagnosis. The last few days the pain has been very mild, so I was hoping that maybe it would just go away, but it is back today with a vengeance. I am trying to work (I am a freelance writer) and I borrowed my husband's standing desk. Using it makes the leg pain go away, but it aggravates an old back problem I've had for many years.

ViewsAskew
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Re: New Member--Do I Have RLS?

Postby ViewsAskew » Fri May 01, 2015 4:07 am

It sounds to me like WED/RLS. Could be that there are multiple things going on, though. The burning sensations could be neuropathy, for example. The involuntary movements could be several things, including periodic limb movement during wakefulness (PLMW). And, many of us have two or more things! I have RLS/WED, PLM during sleep (PLMS), PLMW, and occasionally neuropathy. Because I had them one at a time, I can distinguish them. If they'd all started close together, it would be hard to tell.

Definitely time to see a doctor, but you already know that. There are several things that can cause secondary WED/RLS. Diabetes, for example, can cause both neuropathy and RLS/WED. Pregnancy, MS, celiac, and many other conditions are associated. People with back problems and back surgery seem to be at a slightly higher risk of RLS/WED. Or so it seems to us. If no one in your family has symptoms, a doctor might want to make sure there is nothing else causing these symptoms before deciding that your symptoms are idiopathic.

Many of us have a slow trajectory - we start out with occasional symptoms. It gets worse over time. But, some people (especially those who have symptoms start in middle age or later), may have them start and escalate very quickly.

Who to see is always the hard one. There are some excellent providers - there is a thread in the General RLS/WED section where people have listed their favorite doctor. But, many areas are without excellent providers. I am in Chicago, for example, and I have yet to find anyone who can manage my case. It is a difficult case, but still!

You might want to start with your GP just to rule out other stuff and get the blood work done. Once that gives you more director - or not - you can decide next steps. A sleep doctor sometimes works. A neurologist sometimes works. It really depends on how much they know and how many patients with WED they treat. Oh, and how difficult the cases are that they treat. If they only see people with mild symptoms, they may not be adequate.
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.

SnappyK
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Joined: Sun Apr 26, 2015 6:25 pm

Re: New Member--Do I Have RLS?

Postby SnappyK » Sat May 02, 2015 1:27 pm

Thanks, ViewsAskew. I went to see a new GP yesterday, and we had a long talk about my condition. I also have problems with irritable bowel syndrome, so she thinks there may be a connection there. She is running bloodwork on me, but in the meantime she has started me on a probiotic to try to lessen my IBS, and see if that in turn lessens the RLS-like symptoms. I am taking the probiotics diligently and keeping my fingers crossed!

sleepdancer2
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Re: New Member--Do I Have RLS?

Postby sleepdancer2 » Sun May 03, 2015 5:23 am

What tests did the doctor order? I do hope it included at the very least a ferritin level, as well as magnesium and vitamin D. I'm sure some others could add more to that list. Has anything changed in your life since your symptoms started... started any new meds or supplements?
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

ViewsAskew
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Re: New Member--Do I Have RLS?

Postby ViewsAskew » Sun May 03, 2015 6:16 am

There was a study - maybe 3-5 years ago - that showed a link between the gut and some cases of RLS/WED. It's cited here in on of the topics about research. You may want to find that and find out if the doctor is familiar with it.

There is a LOT out there about diet and IBS. My BFF has IBS and she's had good luck with the fodmap diet. Could be worth a try.
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.

ViewsAskew
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Posts: 15484
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: New Member--Do I Have RLS?

Postby ViewsAskew » Sun May 03, 2015 7:04 am

This was in my inbox recently - not sure you can see it if you are not a member. It's a quiz for doctors/medical practitioners about IBS that was provided by Medscape. I learned some new things from taking it.

http://reference.medscape.com/viewartic ... pID=693416
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.

Rustsmith
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Re: New Member--Do I Have RLS?

Postby Rustsmith » Sun May 03, 2015 8:25 am

Views, yes you need to be a member, but you can register for a membership for free at:

https://login.medscape.com/login/sso/getlogin?ac=401b
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

SnappyK
Posts: 41
Joined: Sun Apr 26, 2015 6:25 pm

Re: New Member--Do I Have RLS?

Postby SnappyK » Mon May 11, 2015 11:36 am

Thanks again for all of your replies and input. My GP was not at all convinced that I had RLS, so she just ran standard bloodwork (no ferritin, no magnesium). However, she does think that I probably have IBS, so she started me on treatment for that right away. I am taking a probiotic twice a day, and I am eating a low carb/low fat/high protein/high fiber diet (primarily for weight loss but she thought it might help the IBS too). I am also walking every day. I don't know what did the trick, but the leg pain is gone and I'm back to having some occasional discomfort in the evenings when I'm sitting that is relieved when I move my legs around. The IBS has gotten much better in a short period of time, so it may be that the IBS was triggering the leg problems all along.

Polar Bear
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Re: New Member--Do I Have RLS?

Postby Polar Bear » Mon May 11, 2015 6:11 pm

It's great that your leg pain is better and that you feel much improved.

As you continue to have some discomfort in the evening which is relieved by movement - I would be pushing to have a ferritin blood check done.
If your ferritin is low as considered by a sufferer of RLS i.e. under 75 or 100 then you could be working on it...... and thus perhaps get ahead of any difficulty that could in the future be aggravated by a low ferritin.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

SnappyK
Posts: 41
Joined: Sun Apr 26, 2015 6:25 pm

Re: New Member--Do I Have RLS?

Postby SnappyK » Sat May 23, 2015 6:29 pm

Thanks, Polar Bear! It's been almost two weeks since my last posting, and the discomfort that's relieved by movement is almost completely gone. The IBS has also continued to improve, so I can only assume that they're related. Just wanted to report how I'm doing in case someone else has a similar problem in the future.


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