Just Joined

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.
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Joined: Sat Mar 23, 2019 7:11 pm

Just Joined

Postby karenreich » Sun Mar 24, 2019 3:12 am

I have not been officially diagnosed but after years of having leg pain I am wondering if it is Restless Leg Syndrome. I am actually sleeping pretty well but I often take an Alleve at nighttime. My husband says my leg sometimes twitches at night. I often sleep on the floor which is more comfortable for me.
That might be related to my not wanting to keep my husband up by being restless. My problem occurs more during the daytime than at night.
For example I went to movie this evening and my right leg was very uncomfortable and I had to keep changing my position. It really interfered with my enjoyment of the movie. I am uncomfortable on long car rides and going to a concert, the theatre. It's just hard to sit still for that long. Not sure if this
is related to back issues, Restless Leg Syndrome or Attention Deficit Disorder. I do plan to see my internist next week.
Any feedback would be welcome.

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Re: Just Joined

Postby Rustsmith » Sun Mar 24, 2019 3:48 am


This link takes you to the official diagnostic criteria for RLS. You must satisfy ALL of the criteria for it to be RLS.

Please understand that many, if not most GPs, do not know very much about RLS. It is not taught in med school, so the only exposure most have is from drug company sales reps.

If you feel that you have RLS after looking at the diagnostic criteria, one option would be to ask your doctor for a referral to a neurologist who specializes in movement disorders or sleep medicine. You should expect a knowledgeable doctor to order blood work, including a test for ferritin, which is not part of a normal iron panel.

Another thing to be aware of is that RLS occurs during the day. There is a related condition called PLMS (Periodic Leg Movement Syndrome), which only occurs at night. PLMS can be diagnosed during a sleep study.

Both RLS and PLMS can be treated either with a dopamine agonist (Mirapex, Requip or the Neupro patch) or with an anti-seizure med (gabapentin, Horizant or Lyrica). If your doctor starts you off with a dopamine agonist (DA), ask for your ferritin number, don't accept "normal" because normal for others is anything over 20 and you need to be greater than 75 if taking a DA. Also, if starting on a DA, learn about augmentation and warn your husband to watch you for the start of any compulsive behaviors (eating, shopping, gambling, etc). You will not see this in yourself if it occurs and it is reason to get back to your doctor ASAP to get off if them since this can quickly destroy your finances or marriage.

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.

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Re: Just Joined

Postby stjohnh » Sun Mar 24, 2019 2:13 pm

Welcome to the RLS community, lots of folks here to help with these problems. Steve's comments above sound absolutely correct to me. One thing he didn't mention is that most people with RLS also have PLMS, and from your description, it sounds like you very well may have both. Happily, as Steve pointed out, in many cases the same medicine will help both problems.

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Re: Just Joined

Postby karenreich » Sun Mar 24, 2019 10:35 pm

Thank you both.

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Re: Just Joined

Postby badnights » Wed Apr 03, 2019 6:40 am

The key thing about WED/RLS is an urge to move that's triggered by relaxation - by sitting or lying down. The urge to move is usually accompanied by distressing or unpleasant sensations, such as pain. It is worse later in the day, the worst times being evening and early night, but it happens in the daytime too, and in severe cases, the patient may no longer be able to say that it's worse at any particular time.

During one of those episodes of being unable to sit still, will you notice an urge to move building up if you attempt to hold yourself still?

It does sound, if you answer yes, as if you have both WED/RLS and periodic limb movements in sleep. PLMs are quite common, but for some people they can be very disruptive. They are usually more of a bother to the bed partner than to the person twitching.

You didn't mention being concerned by a lack of quality sleep, only by being unable to sit still though events. The main impact of RLS/WED is insufficient sleep.

Many doctors will direct you immediately to one or another of the medications in the dopamine agonist (DA) class. Medication may not be necessary - you might only need iron - but many doctors are still unaware of this. You must be very cautious of DAs, because they eventually make the condition worse - they take it to a level you probably can't even imagine right now. Even though the DAs are so dangerous to us, most doctors are not aware of the potential for harm, since DAs are still listed as the primary treatment of choice for WED/RLS. (DAs are also used to treat Parkinson's disease (PD), where they don't have any negative impact on the Parkinson's itself, but can cause or exacerbate RLS/WED in the Parkinson's patient. Since PD is a movement disorder with its own host of worrisome issues, the RLS/WED caused by the DA is often overlooked.)

Your best bet is to get your blood ferritin levels checked (ferritin is a protein that stores iron in our cells), and if your ferritin is less than 100, take oral iron supplements (or even IV iron if you can get it), as long as there are no contra-indications. WED/RLS, as Holland points out, is fundamentally a brain iron deficiency. We don't have enough iron in part of our brains. CAUTION : many labs will report blood ferritin levels normal as long as they're 20 or above; they will not consider 30 or 90 to be low. People without WED may be able to function well enough with such low ferritin, but those of us with WED/RLS usually cannot.
Beth - Wishing you a restful sleep tonight
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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