Restless Legs /Periodic Limb Movement Disorder

Hi. I was originally misdiagnosed with complex sleep apnea but actually have RLS/PLMD. Is there anyone else here who has either? I'm curious about your treatment and what is working for you. Thanks!

I have RSL and was put on multiple medications which none worked. I take a lot of oral magnesium which I do notice helps me get a better sleep. I would video tape myself sleeping (night vision webcam) and watch it the next day to see if I was kicking, snoring, turning over etc.. and the magnesium nights showed less movement. I am in Canada so the medications will be different, but I went on them to help with the fatigue and the meds made the fatigue worse.

I can share with you my personal experience, but I have learned that each of us has a unique physiology and we should not assume that the experience of one person will be the same for another. Discuss with your physician any medical interventions you consider. When my RLS was really bothering me, I was prescribed Requip which is also used to treat Parkinson's. I developed augmentation, which means that the symptoms became worse. After a period of nothing, my physician suggested we try gabapentin (Neurotin). Fairly quickly, I started having constant thoughts about dying, for example, while getting ready for bed, wondering if people would know where to find my will if I died in my sleep. I also had occasional suicidal ideation even though I didn't feel depressed. Obviously, I stopped the gabapentin and those went away. After another period with no meds, my physician prescribed a low dose of diazepam (Valium). That does seem to work, and the only side effect I have noticed is a bit of fuzzy-headedness in the morning. I don't take it every night, and a 30 day prescription will last me 3-4 months since I really don't like taking meds. So I guess my thought would be that meds work for some people, but be careful and work with your doctor. On a non-medical side, I bought a light blanket and sleep on top of the covers while my spouse sleeps under the covers. With only the light blanket not tucked in anywhere, it makes me feel less tense in the legs, though not sure if it reduces my kicking.

Thanks for sharing your experiences @rjpeeb and @MikeJ. Good advice to discuss any interventions with your physician, as people do react differently to treatments. You might find some helpful information at www.rls.org, the website for the Restless Legs Syndrome Foundation, or from the NIH at http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm.

My first medication was Mirapex but it made my RLS and insomnia much, much worse (augmentation?). My sleep Dr. stopped that and I am now on Clonazepam. It seems to calm the RLS most days and most nights I sleep without waking up too much. However, I still feel just as tired and have no energy at all. Since I have PLMD if I don't take anything my sleep is constantly interrupted every night. I have another appointment to see the sleep Dr. in about a month. I really need some energy back so I can walk and ride my bike again and hopefully lose some weight.

I had a period of really bad (like, financee asked me to sleep on the couch because it was keeping her up bad) RLS, which turned out the be an iron and/or vitamin D deficiency (I had both, but I think they specifically attributed the RLS to a lack of iron). I got on supplements for a while and though I still have it sometimes, it's not nearly as bad. Obviously avoiding caffeine, etc in the evenings is necessary, too, and exercise helps.

My Dr. checked all my vitamin, mineral, etc., levels first and fortunately or unfortunately they were all fine. I was happy they were good but you're always disappointed when you're looking for answers and that particular test didn't give you the answers you were looking for. I also have a tremor in my head and one leg that my GP thinks may be essential tremor, as well as other neurological symptoms like random tingling, pains and possible migraines, so very soon I'm going to push for another referral to a neurologist. I was referred to a neurologist for my sleep issues but never did see him since he was on medical leave himself. It's so frustrating that everything takes so long!

Hi @Jorja, @UsernameNumber, @MikeJ and @rjpeeb. I read an interesting article about some RLS research this morning on my way in to the office. I'm posting the link because, based on recent forum posts, I thought you might find it interesting. The article can be found here: http://www.sleepreviewmag.com/2015/09/rls-migraine-bruxism-triad/ Best, Dan

For about two months I have been getting a creepy tingling on one leg. I remember the first time, it felt like ants were crawling all over my leg starting from the knee. I'm used to it now and expect it. It doesn't hinder my sleep but now I'm experiencing the same tingling when I stand - for example it happens when I brush my teeth. My leg often feels cold especially at night. What is this?

I use a CPAP machine since April 2015.

Hi FriendlyLilacNewt- The feeling of "ants crawling" over your legs, especially at night, could be a symptom of restless legs syndrome. However, the experience of funny sensations, especially if accompanied by a feeling that your leg is cold, could also indicate a problem with your circulation to your leg, or other problems with the nerves or blood supply to the leg. I suggest you discuss this with your doctor who will want to discuss with you more specifics and do a physical examination. This sounds very uncomfortable--let us know how things work out for you.

I have had RLS for most of my life. It was years before I knew what the problem was and quite a while before I found anything that works. I will pass on a few suggestions/ideas for consideration but one thing to remember has already been posted--everyone is different. What works for one may not work for another. It can become very frustrating!

The first thing I would suggest is to learn everything you can about RLS. The best place for that is the RLS Foundation website. I was on the board of directors for several years and it is the most reputable, reliable site there is. The discussion forum there is also great. Education is key--many doctors don't know that much about RLS and there are many more who don't believe it is a viable disease. So go armed!

Second, there are no tests available to prove or disprove that you have RLS. The only thing that comes close is a sleep study. It will show how many times you are awakened and/or how long it takes to get to sleep but there are still doctors who will not use that as evidence that RLS is the problem. My best suggestion is to keep a sleep diary--what you did during the day, what you ate, stress levels, exercise, etc and then how you slept that night. How long it took to fall asleep, how often you woke up, how long you were awake, etc. Sometimes you can track what things make your RLS worse. Plus this helps when you visit your doctor. Proof that you are not sleeping well instead of a vague, "I just don't sleep."

If anyone is interested, I can post more suggestions that might help. The last one for this post is for Friendly--unless you have a strong urge to move your legs along with your feelings of tingling, you probably do not have RLS. That feeling that you have to move your legs (of other body parts) when you are at rest is the key criteria for RLS. That isn't to say that you might not be having early signs but chances are your tingly feelings are due to something else.

Thanks for the interesting article Dan. I have RLS, Bruxism and what I think are migraines, as well as PLMD. I also have random body wide tingling, numbness and different kinds of pains.....I wonder if these are related to the RLS/PLMD or are a sign of something else. My sleep Dr. said we need to fix my sleep first before we investigate anything else.

Hi @Jorja. You're most welcome. It sounds like you have a number of symptoms to explore. Correcting your sleep issues might help with some of those, but I encourage you to continue to seek answers if you find treatment for you sleep disorders do not alleviate the symptoms. Best of luck!

I have leg cramps, not RLS. However someone suggested that I put a soap bar (I use a hotel soap) in my bed between the sheets in the foot area. It helps me some but it eliminated Hubby's RLS which was aggravating my sleep issues with his kicking around all night. No idea why but it helps.

@Jorja, I was mistakenly NOT diagnosed with complex sleep apnea and took years to get to the correct treatment. I'm trying the EERS treatment and so far, so good. Sustained cognitive improvements, fewer bad nights, but hard to keep the mask leaks down regardless what I do. Then another doc said she thought I had RLS. Nothing has ever showed up on a sleep study, however, and I just had another one in December.