I had a cab driver once who couldn’t stop belching. It was like a 15-20 minute drive from the airport to where I was going and he never stopped constantly belching. Every breath he took was a belch. What’s up with that?
I searched for RLS and this is the only thread I found. I have it bad now, worse in my arms than in my legs, I find myself making sudden, almost involuntary jerks of my arm, and it always seems to happen just before I am about to fall aslerep. Looking it up online, they still don’t know what causes it and how to medicate it. I’ve read about potassium, and vitamin E, and exercising before going to bed, or a hot bath or shower, or massaging your legs or arms, but since there is not definitive medical solution, I will turn to anecdotal solutions. What are you fellow people who suffer from this syndrome doing? I’ll try anything, because right now the only thing that works is drinking a bottle of wine before going to bed. I can’t drink a bottle of wine every night. Well, I could but that is not very healthy, is it? Neither is getting only 4 hours of sleep a night.
@Mike_Mabes : Are you sure you aren’t experiencing hypnagogic jerks rather than restless legs? What you describe sounds more like the former.
My FIL struggles with it. Right now he’s trying exercise when in the throes and methadone. It’s been a very long road.
That or myclonus. (Which basically is what hypnagogic jerks are)
Despite what I said earlier, I do actually have RLS – because it’s gotten worse as I’ve gotten older, at least much more frequent. And I stopped using heat rubs because I read somewhere that it’s bad for pets, and my cats tend to sleep with me. 
@Mike_Mabes, there ARE legitimate medical treatments. No cures, mind you, but a LOT of valid treatments.
10+ years ago, the first line of defense was a dopamine agonist - such as Requip (ropinirole, which was one of the first meds officially FDA-approved for RLS), Mirapex (pramipexole) etc.
There were some problems with these. At higher doses, some unwanted behaviors could occur (impulse control etc.). Not typically at the doses used with RLS, but it can’t be ruled out. Also, rebound (symptoms coming back with a vengeance with the dose wore off) and augmentation (where your symptoms actually get worse after a time on a dopamine agonist). For those reasons, one of the recommendations (and this was from Earley / Allen - pioneers up at Johns Hopkins) was to take a “drug holiday” every year or so - a few weeks off of the medication.
The drug holidays aren’t terribly enjoyable. I’ve managed to stay on a fairly reasonable dose of Requip for something like 15 years, and I try to set aside about 2 weeks every year where I can pretty much be a zombie (I do have other meds on hand to help with sleep, such as a regular sleep aid).
The usual first course these days, as I understand it, is Neurontin (gapapentin) or one of the related drugs in that class such as Horizant or Lyrica.
There is a dopamine agonist patch that some people I knew online tried (Neupro) and weren’t terribly successful with, as far as I can recall; this was a few years ago.
Some doctors will even put patients on long-term opiates (including methadone) if other medications fail, though obviously that’s not ideal given the current opiate crackdown.
Nutrients are an issue. There were studies some years back (again, Allen / Earley; I hoped to participate but could not commit the time required) involving iron infusion, since lower levels of stored iron seem to correlate with worsening RLS symptoms. I don’t recall the mechanism - something about the brain not being able to process dopamine as well. In any case, RLSers are advised ti get their serum ferritin up to 50 or better yet 100; the normal range is 12 to 150 (women) or 12 to 300 (men) - so a level of 25 or so is fine for most people but if you’ve got RLS, you want it to be higher. Mine has always been 50 or above, but a few days after I broke my foot, mine was down to 27 this spring, so I’m now doing iron supplements.
I don’t know if other nutrients are an issue, but B12 is something that ought to be checked in general.
Other meds may also worsen things. I had an argument with my primary care doc, back in 2010; she wanted me to try Reglan for what she thought were stomach issues (whole 'nother tale there, which I’ve told before). I kept saying it would worsen my RLS. She hoped it wouldn’t. I took one dose - and guess who was right? I likened it to washing an antacid down with a tall glass of lemonade - the Reglan cancelled out the Requip.
What you’re describing is more like a hypnic / hypnagogic jerk (which, really, does sound like something you’d call someone as an insult, right?) - but those are usually an occasional annoyance, not as bad as what you describe. There is a version that happens while asleep, Periodic Limb Movement Disorder, which has a strongish correlation with RLS. And there may well be a correlation between what you describe and RKS,
Have you discussed this with a doctor? Ideally a neurologist who specializes in RLS, or movement disorders, or a sleep specialist (who usually starts out as a neurologist).
You’re absolutely right that a bottle of wine at bedtime is not an ideal solution - for quite a lot of reasons (not the least of which is, it won’t help and will lead to even worse sleep later in the night).
Massage can be helpful for RLS (and possibly your issues), by temporarily distracting the body. I’ve been known to use a thumper-style massager on my legs - prior to my starting on Requip, and occasionally during my drug holidays.
You might get signed up for a sleep study. My definitive writeup on that topic is here.
As much as I dislike them: They aren’t necessarily all that useful in diagnosing RLS (which is the urge to move limbs as you are falling asleep - and thus is often diagnosed based on patient history), but can confirm the PLMD issues and also things like hypnic jerks, as well as other sleep-related issues.
So, if a doctor recommends one, read the linked posting, but just go ahead and do it.
If you are having trouble finding a doctor, the RLS foundation has some resources:
https://www.rls.org/treatment/find-a-healthcare-provider
Some neurologists are less than knowledgeable - like before I visited Allen / Earley, one was insistent that Sinemet (an older Parkinson’s drug, that had proven already to be problematic with RLS) and Klonopin (you sleep despite the RLS, but then you get hooked) were just dandy. To be fair, that was around 2000; one hopes that there’s better understanding out there now.
Bottom line, though: discuss with your primary care doctor. It’s his/her duty to steer you on this. If he/she is dismissive, or gives you bullshit advice, stand up for yourself.
Responding to some older comments (like, 15 years old!):
- Quinine has been recommended over the years. Best medical opinion is that it won’t do anything, but at least (within reason) won’t do any harm.
- I have several online buddies who are in the UK and have been treated for RLS by their doctors on the NHS.
- Masturbation… well, it may distract the body long enough to hopefully fall asleep.
- Calcium / magnesium supplements won’t hurt and might help if you’re deficient in those.
- Bar of soap??? Er, won’t hurt, but the only way it would help would be the placebo effect. For anyone considering voting for Doctor Oz in Pennsylvania: he’d lose my vote for his response when asked that question once. He did say “couldn’t hurt, give it a try”. He did NOT say “but there’s no reason to believe it will do anything”.
- Every one of us has fantasized about having our legs (or arms!!) amputated. Only problem is: ever heard of phantom limb syndrome?? Imagine having that, and having RLS sensations in it, and not having a limb to move??? (I did once make my husband hold a (shielded) hacksaw above my leg and pretend to saw, while I took a photo).
- “It’s all in your head” is actually true: RLS is a central nervous system problem!
- Some meds do make it worse. Many antidepressants. Stuff like Reglan and many antihistamines.
I’ve always thought the right retort to someone dismissing a symptom as “all in your head” is: “Of course it is. My head is where I live.”
Klonopin was actually a lifesaver for me, but I may be a weirdo in how it worked out. RLS was always a modest problem for me until perimenopause, when RLS-like symptoms made bedtime unbearable most nights, and sleep impossible.
I was living in Indonesia at the time, back when one could sail into a pharmacy and get many drugs without a prescription. At the recommendation of my half-sister, I got a single bottle of Klonapin, 100 2mg pills, which I split in quarters for .5mg doses.
That one bottle lasted me for over 10 years, as I was careful to use it intermittently (my rule was, never more than 2 nights in a row, and never more than 3x/week). By the time it ran out, it didn’t seem very effective, perhaps because the pills had lost their potency or I’d developed tolerance. However, I never experienced any withdrawal symptoms, I never increased my consumption, and all in all it was a godsend. I don’t think I’d have made it through perimenopause without exhaustion without those pills.
I’m back in the US now, and while I’d love to have a few Klonopin around for the rare nights when I’m overcome with RLS twitches (happens maybe 1-2 nights per quarter, or max 8x/year), I assume any American doctor would be affronted and assume I was a drug-seeker so I have never tried to get a prescription, and have no plans to do so.
I take Requip and it works “ok.” I’ve found that taking a magnesium supplement has helped as much as anything. If I’m still feeling it, I try to roll to the affected side (it’s almost always one leg or the other and not both) and lay on the bed with my foot hanging over the end of the bed with my toes pointed toward the floor so that my kneecap is in contact with the bed. This seems to give my leg the kind of “feedback” that it needs to settle down. This is effective for me about 95% of the time.
If worst comes to worst, I’ll put on a calf compression cuff or take an Ambien.
Why not? If you get to know your doctor and s/he knows you, mentioning the Klonopin from years back, and asking for a small supply, is not an unreasonable request. Since you mentioned it wasn’t working as well toward the end, you could even take the tack with the doctor of “this is something that worked for me in the past when I used it sporadically. I don’t know if it will still be effective,. but maybe it would be worth my having 4 or 5 pills on hand so we can see how it goes”.
Your use is not the sort that the doctors I spoke to (the competent ones, that is) would have worried about! For someone who needed meds on a DAILY basis, Klonopin is (to me) unacceptably risky.
I actually keep a small stash of Sonata (zaleplon, a sleep aid) on hand and one of the uses is when I do my annualish “drug holidays” where I go off the Requip for a few weeks. I don’t use it every day during that time (as I’ve proven to be very sensitive to rebound from such drugs). And I use it other times during the year on those fortunately rare occasions where I simply cannot sleep. Potent suff - sometimes it works without my even TAKING it (seriously: knowing I have the remedy available is sometimes enough to get me off that ‘ZOMG I CAN"T SLEEP’ fretful feedback cycle).
Nars, interesting on the mention of a compression sock. I might give that a try sometime (though my own sensations don’t necessarily inspirer me to think it would be helpful). I’m also on Requip and for me it’s a balancing act between taking it early enough to kick in by bedtime (but feeling crummy and flu-ish in the meantime), and taking it right at bedtime and fighting the twitchies.
Regarding non-drug methods of coping:
I actually “knew” the author somewhat, online, early on in my RLS journey. The docs at Johns Hopkins actually mentioned her to me and were somewhat tickled that i already knew of her. I’ve got a copy of the book somewhere; it seems to be out of print now.
This article is co-authored by Jill Gunzel (the book’s author), and Mark Buchfuhrer (another of the leading RLS specialists). The web page linked appears to be defunct; Jill died a few years back, and it seems nobody is maintaining it any more.
didn’t they ban quinine sulfate? it worked great for leg cramps for me but made me loopy as hell…but id love to get some because I had a cramp from when I turned over in both legs after moving in bed for like 2 hours …
I hadn’t heard of this - but did some googling and apparently you’re correct. Some articles say it is somewhat effective, but the risks generally outweigh the benefits.
There is some quinine in tonic water, though I expect you’d have to drink a lot of it to have a therapeutic effect. And then you’re into side effects territory. My husband used to drink a liter or so of it a day, but quit when his platelet levels started dropping (though stopping the tonic water did not solve that, so it was likely unconnected).