Fellow RLS sufferers, give me your tricks and tips!

August 28, 2023 9:07 AM

I have dealt with Restless Leg Syndrome for several years; it comes and goes without much rhyme or reason. Lately it's been especially bad, waking me up several times in the night – and my usual tactics aren't really working...

I feel it throughout my body, rather than just the legs. I've had some luck with magnesium supplements and theanine, but have not found anything that works every time. When it happens, the only thing that works is to physically get up out of bed and move around: arm windmills, walking, rocking back and forth on my feet, stretches, shaking out my hands and legs, etc. Plus these days, I've got perimenopause to factor into the equation. SO. I would love to hear the random stuff that has helped you! I'm hoping to avoid neurological meds but if those have worked for you, I'd love to hear more. Thanks!

posted by Molasses808 to Health & Fitness (24 answers total)

My wife has been dealing with an onset of RLS, inherited from her mom. Her current thing is to apply some Biofreeze on her calves and knees. The rollon applicator is good for this.

She says the heat/tingling from the menthol distracts from the leg sensations.
posted by JoeZydeco at 9:12 AM on August 28, 2023 [1 favorite]

Run a massage gun along all the affected limbs and muscles. It seems to get/pulse the shakes out without the as-wakeful physical activity of moving around.

I've only had it mildly, but this worked for a couple of friends with much stronger RLS.
posted by Elysum at 9:12 AM on August 28, 2023

Sympathies. I get it in my legs only. I never had much luck with magnesium supplements until I realized there were several different kinds that work for different symptoms. And that it pays to buy better quality than what I was buying in places like Walgreens. (I was actually taking it for migraines and realized by accident it made a huge difference on RLS). This is the one I use now and it is great for me.

I also find doings a lot of leg stretches last thing before I get into bed helps a lot. Ham strings, calves, quads: all of it. Against a wall, sideways, pigeon, etc. A good 5-10 minutes stretch session as the very last thing before I go to bed. Would a full body stretch session before you go to sleep be possible?
posted by EllaEm at 9:17 AM on August 28, 2023

I'll second use of the massage gun. You might also try magnesium body lotion.
posted by ThePinkSuperhero at 9:23 AM on August 28, 2023 [1 favorite]

I'd also suggest tracking your exercise, food, and sleep for a couple of weeks, to see if there is some pattern you haven't noticed yet. For me it's all about exercise patterns, but over the course of about a week rather than daily changes.

E.g., Is it related to too much salt, for instance, or whether you usually walk a lot and that week have been sitting more often instead.
posted by EllaEm at 9:23 AM on August 28, 2023

Magnesium body lotion helps me.

Also - have your PCP check your iron studies. A low-dose iron supplement (45 mg, often in a slow release formulation) seems to help a lot of my patients.
posted by honeybee413 at 9:28 AM on August 28, 2023 [1 favorite]

Am I really going to be the only response suggesting an RX? I have been prescribed Carbidopa-Levodopa ER 25-100 for the past 30-plus years. It works, period. I take one tablet around 7:00 pm.
I have never had luck with magnesium supplements. I’m not saying they don’t work; just not for me.
posted by BostonTerrier at 9:42 AM on August 28, 2023 [5 favorites]

Someone I know with RLS says that a large dose of vitamin E helps her. I don't think it makes it completely go away, but it makes it more tolerable.
posted by Eyelash at 9:51 AM on August 28, 2023

Carbidopa-levodopa worked for me for a few years before it led to augmentation (worsening of symptoms after starting an RLS drug). Now I take pramipexole and find it pretty effective.
posted by bananapants at 9:53 AM on August 28, 2023

I use gabapentin for insomnia, but solving the RLS is an added bonus. I know it's not your first choice but it works for me.
posted by metasarah at 10:15 AM on August 28, 2023 [1 favorite]

Masturbation, apparently!
posted by sageleaf at 10:27 AM on August 28, 2023

Pramipexole was a total game changer for my RLS. If you haven’t tried it, definitely ask your doctor.
posted by theotherdurassister at 10:36 AM on August 28, 2023 [1 favorite]

Re: magnesium: according to someone I know who recently got a masters degree in nutrition (and is working on becoming a dietician), the reason magnesium works, when it works, is that the body uses it to process sugars like simple carbs, and when it doesn’t have enough magnesium to do that it steals magnesium from the nervous system, leading to RLS symptoms. (I have probably mangled the explanation, so if that’s not right, blame my imperfect recall.)

Presumably if it doesn’t work for someone, their RLS symptoms stem from another cause.
posted by telophase at 11:05 AM on August 28, 2023 [1 favorite]

This is one of those zebras, in the saying 'when you hear hoofbeats, think horses not zebras'. (What is going on is 99% probably RLS in other words.) I did want to mention though that when I had covid, and for some time afterwards, even though my case of covid was relatively "mild", I had some symptoms similar to RLS symptoms.
posted by gudrun at 11:07 AM on August 28, 2023

If your periods got heavier and/or longer with perimenopause, you might have low iron levels which can cause and/or exacerbate RLS.

I had a standard blood panel done by my doctor after I complained of heavier periods and it turned out that my ferritin was extremely low due to the extra blood loss I had been experiencing. I started supplementing with ferrous gluconate + vit C, and as my ferritin levels increased my leg twitching decreased. Consider getting a blood test done to see if you'd benefit from iron supplementation.
posted by burntflowers at 11:47 AM on August 28, 2023 [1 favorite]

Pramipexole. I only use it for situations like a long flight, but it’s awesome.
posted by aramaic at 12:04 PM on August 28, 2023

Honestly, when I found out after a sleep study that I had RLS I just accepted the script for a very low dose of Pramipexole without trying anything else first. Mainly, because I did not know I had it, just that I was not getting good rest during sleep. It was a total gamechanger as well. I had no side effects but felt way more rested. It has been about 10 years and I still take the same dose. I had one time where I had to unexpectedly stay away longer on a trip and missed two doses. I was really feeling it the second night but I don't know if my RLS is worse or if it was more of a withdraw issue.
posted by maxg94 at 12:05 PM on August 28, 2023

I'd struggled with this for over a decade, with pretty severe symptoms, and spent many small hours trying to track info down online, and trialing different things, including squats and star jumps at 3am, magnesium supplements, even trialing completely sugar free for 18 months (excluding all forms of refined sugars and sweeteners), etc.

Three things have helped me personally pretty consistently:

1) One of my lumber vertebra was sometimes out of alignment from repetitive twisting at work for a few years. A bunch of nerves run through it and so when that's out, there's almost nothing I can do (RLS then affects 4 in 5 nights sleep). An osteopath was able to reset it pretty well when it went out (I'd know because I'd suddenly get really bad RLS again for days). And occupational postural changes long term helped keep it in place.

2) No big / slow / sugary food for me after 6pm. Maybe a light snack some days it there's been a lot of physical exertion, but only certain types of food. My main and only real meals are breakfast and lunch. Same with no coffee after 1pm (gives me a very restless brain for at least 9 hours).

3) If all of the above are current, and I still get RLS a bit as I'm trying to sleep (typically now only much more mildly), then a single generic ibuprofen tablet, and/or an orgasm seems to ease RLS symptoms in about 30 minutes.

I wish you good luck in finding what works for you!
posted by many-things at 1:48 PM on August 28, 2023

Be very careful if you choose pramipexole. Either be very self aware or get someone you trust to keep an eye on you and let you know if your behaviour changes, because it’s been known to cause impulse control disorders. I plan to tell the story of all the insane shit I did on it, possibly in comic form, when I’m old enough that it can’t come back to haunt me. I find magnesium from epsom salt baths works better for me than oral supplements.
posted by wheatlets at 1:55 PM on August 28, 2023 [1 favorite]

CBD has been a game-changer for me. I use it in very, very low quantities--like, the tiniest dab of something that's intended to be an everyday face moisturizer--and it's just enough to keep me from waking up in the middle of the night.
posted by dizziest at 3:54 PM on August 28, 2023 [1 favorite]

as per this link from john hopkins, perhaps iron deficiency is to blame. YMMV of course, and iron supplements should not be taken willy-nilly. i have already been on the magnesium train for quite some time, and magnesium helps with staying-asleep at night, but didn’t stave off restless leg symptoms.
posted by tamarack at 9:02 PM on August 28, 2023 [1 favorite]

My summary of the most recent protocols for treating RLS: https://henryaj.substack.com/p/how-to-treat-restless-legs-syndrome

Sympathies. You might be able to get away with taking pramipexole on-demand; I find that helps if my RLS is really bad and nothing else helps.

But if it's regular, I would follow the protocol in the link.
posted by osmond_nash at 5:40 AM on August 29, 2023

I find my RLS is significantly worse if I drink alcohol or take an antihistamine that day. Also if I'm dehydrated.

My symptoms have improved a LOT since I started doing core strengthening exercises like squats and bridges. I have it only in my legs, though.

I put an ice pack under my feet for ten minutes, sitting up before bed. Then I keep the ice pack in the bed and if RLS wakes me up I can get enough relief from putting my feet against it to fall back asleep, usually. Keeping a cool/cold bedroom is also really important.
posted by guessthis at 6:57 AM on August 29, 2023

My best friend found she was iron deficient, started taking a supplement, and hasn't had a restless leg since.
posted by reksb at 9:45 AM on August 29, 2023 [1 favorite]