I had RLS pretty bad back when I was married. It was back when I was drinking alot too, so that’s pretty much all I did for it. It went away when I stopped taking my physc meds, but now that I’m taking Lithium again, RLS has come back full force. At least at my old job I was always walking around. My current job I am at a desk for most of my shift.
Please offer me any suggestions you can. This is so frustrating, I am literaly in tears as I type this. Oh, and I should mention I don’t have insurance, so Rxs are out of the question.
Tell the doctor who is giving you the lithium. He should know. I read somewhere that RLS is often associated with depression. Maybe exercise would be good for the down times and for the restlessness.
I had it for a while when I was really down and it eased up when I got out of a stressful situation. I have just a little of it from time to time, but nothing like it was twenty years ago. Almost anything I could suggest would involve seeing a doctor.
You might try some relaxation exercises or even meditation. These don’t cost anything.
The folk remedy is to put a bar of soap at the foot of the bed. Exercise helps. I never tried the soap thing because I just let my legs twitch. Trying to suppress them just increases the restlessness.
I have had some luck with Leg Cramp Pills. They have quinine in them. I have also found that for me some extra calcium, potassium and magnesium have helped - but I very much hope that you ask your doc before taking any of those supplements, *especially *because you take lithium.
I have never been sure that I have what is called Restless Leg Syndrome or not; some people have told me that if what I do for it works, it therefore must not be RLS. But I do leglifts in bed, adjusting my position from laying on my back to my side as I do 'em until I’ve got my entire thigh muscle tired out. Sometimes I get up and do deep-knee-bend squats, too.
Don’t be so sure you can’t afford your prescriptions because you’re uninsured. A lot of them are $4/month, and if it’s more than you can afford, depending on your income many of the drug companies offer patient assistance programs to help out.
IANADoctor, but I work with a network of doctors who use non-invasive techniques to treat varicose veins and other vein-related conditions. Since there is evidence of a relationship between RLS and venus reflux, treating problematic veins can be a viable option…but do your research and decide what treatments work best for your situation.
Hmmm - this is the first I’ve heard of that connection. One comment I can make for sure is that so many RLSers have so many other different issues going on, that at the very least, reducing those can cut out a little of the “static”… and if I’ve got something else going on, that can ramp up the brain processes that kick off (hah!) my twitchies. Zoe’s comment about it being worse when in a stressful situation rings very true to me.
Khadaji’s note about the leg cramp pills / quinine is one that I hear a lot; A lot of less-knowledgeable doctors try quinine. It’s widely considered to be ineffective in true RLS however.
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conurepete**'s suggestion of a bar of soap under the bed is another one we hear of pretty often. It generally gets a laugh and a comment that at the very least, it has zero risk of causing any problems!
emmaliminal’s discussion of doing exercises: that’s an excellent non-drug way to combat the beast. It may not be enough, if one’s RLS gets bad enough.
Several excellent websites to check out: http://members.cox.net/gunzel/index.html (redirected from rlsrebel.com). I’ve corresponded with the owner, Jill Gunzel, and she has a lot of techniques that she uses to combat The Beast, drug-free. As you’re on lithium, these might be worth checking into as they certainly won’t pose the drug interaction issues that the other RLS treatments might.
Discuss this with the doctor who manages the lithium. I haven’t heard in particular about lithium worsening RLS symptoms, but many SSRI-type antidepressants are known culprits. Your lithium-doc may have suggestions for other medications you can take, if the non-drug options aren’t enough. You can request to be seen by a neurologist or sleep specialist; if you’re lucky, you’ll find someone who’s RLS-knowledgeable.
Not all are; I had one neurologist try to argue me into taking Klonopin which is in fact used for RLS, but is in general NOT a very good choice unless nothing else works (long half life, high risk of dependence). That same doctor insisted that Sinemet (an l-dopa preparation used in treating Parkinson’s) had no problems associated with it, despite my having heard from a LOT of patients, and some world RLS leaders, that it does!
If you pursue a medication-based approach, my understanding is the gold standard is to try either Mirapex or Requip (both dopamine agonists) as the first step. Other medications they can try are Neurontin (an anti-epileptic), narcotics (work wonderfully, as per my experience when I’ve had Vicodin for other reasons, but obviously dependence is a concern), Ultram (which I think is a pseudo-narcotic that is thought to have less risk of addiction; some medical folks can clarify what the stuff is vs. a true opiate), Klonopin.
As well as iron supplementation - a large percentage of RLSers have lower ferritin (stored iron) levels than desired, and even a reading in the lower area of the normal range (it’s a large one, like 15-150 or something) should be brought up. Obviously don’t iron-supplement without discussing with the doctor; if your iron levels are already well into the middle of the range, adding more won’t help and could harm.
Massage can help in falling asleep if you have a partner. I also have a “thumper” - one of those heavy things that look like ET’s head, and have two spheres that vibrate rapidly. I’d seen one at Brookstone for like 120 bucks, tried it in the store, loved it, but didn’t wanna spend that much. Saw a knockoff a week or two later at Bed Bath and Beyond, for 40 bucks. So some nights I would just pound my legs into submission with it.
Obviously your lithium will impact which therapies are usable / beneficial for you. Personally - in addition to discussing with your doctor!!! - I’d start with the RLS Rebel tricks, plus looking into foods / beverages that may be affecting it, and making careful changes there as appropriate.
Requip (ropinirole) is available in a generic form and may not be as expensive as you think. I take it and it definitely helps. Talk to your doctor.
I’ve found that when my legs are really bothering me, it helps to sleep on my stomach with my feet hanging over the end of the bed. This seems to supply them with enough of the “feedback” (if that makes any sense) that they need to help calm down the twitching.
Recently, I’ve started wearing compression stockings about an hour before going to bed. This also seems to provide feedback for my legs. I usually take them off sometime in the night because my feet get hot.
Re: Soap in the bed. I have a theory about why this is always recommended. If you put a bar of soap (or a big lump of anything else for that matter) where your legs would normally go, it’s going to cause you to adopt a different sleeping position than you are normally accustomed to. Just changing your normal routine might be enough of a distraction to help you get to sleep. Eventually, the twitching will come back. Plus, there’s always the placebo effect.
Good luck! If you find something that works for you, please share it with the rest of us. RLS really sucks.
For N Richards-
Most pharmaceutical companies have programs for patients that cannot pay for their meds. do you qualify for medicaid? There are many ways to help you get meds. Ask your doctor for samples, too. There are online support groups for RLS that offer tons of support, advice, coping skills, and of course we talk about meds.
You may email me privately of you wish. www.rls.org is the web site fir the RLS Foundation. They also havec a page on Facebook. Another good web site is www.rlshelp.org
I am happy to help anytime! On the web sites I gave , there are links to the RLS support groups. I highly suggest you check them out.
We have found that the old wive’s tale of using soap, if it works it is a placebo effect. It will make your sheets smell nice. It is very unlikely that the molecules from the soap are going to jump onto your legs. I am not trying to be a smart a**, but I am just repeating what a chemist friend, who has RLS, told me. I have
severe RLS, and other sleep issues.
Remembering that everyone reacts differently to different things, this is not something that will help RLS. RLS is a neurological disorder, and has nothing to do with RLS. I checked out the web site, and there is only one study listed that
only 174 people participted in. That is hardly proof that this works.
I have about 1450 members in 3 RLS support groups, and this theory was debunked a long time ago by the RLS Foundation. Just stating what I know.
I forgot to comment on your first sentence. “Help me get rid of RLS”. we can help with coping skills, med questions, etc. There is no cure for RLS, so we have to do our best to squash the beast. Once you find something that helps, your symptoms may quirt down, but it does not go away, and gets worse with age.
Quinine has been taken off the shelves in the US. Not sure about other countries.
and, it;s only use would be for leg cramps (besides malaria), not RLS. They are two very different things.
As always, consult your doctor, and read all you can on the subject if RLS.
I had posted that quinine had been pulled ioff the shekves, and I find it for sale all over the internet, so i am taking that back. But, I am totally confused about it because I have heard so much information about Quinnine and it’s side effects that I know I have discussed on other sites about it. chalk it up to severe sleep deprivation, please. :rolleyes: I am exhausted.
have agood night or day, wherever you are. :o
In 2006 the FDA banned the all brands of Quinine except Qualaquin, which is by prescription. It is confusing, but the Hyland’s can be bought OTC, even thought the FDA banned the sale because of the svere side effects, like death.
is a link that explains it further. Thanks for bearing with me in my confusion. :rolleyes:
Thanks for all of the suggestions! I have an appointment with my doctor on Wednessday, and will talk with him about it. I had a really good workout tonite before work (at work now). Most of the twitchies are in my calves, and I find it hard to target that area to tire them out. I did the treadmill on a steep incline, and tried to walk in such a way to stress the calves. We’ll see if it helps!
What is RLS? 'Cause when I sit I’m bouncing either one leg or the other (sometimes both!) up and down off the ball of my foot. I have done this for years. Sometimes (like now) I’m really cognizant of it and others I’m not even aware I’m doing it.
I don’t have any leg muscle contractions that are involuntary while trying to sleep. But what is this that I do? Just a nervous habit?
There are online support groups for RLS that offer tons of support, advice, coping skills, and of course we talk about meds.
I am not trying to be a smart a**, but I am just repeating what a chemist friend, who has RLS, told me. I have