r/RestlessLegs

I have terrible RLS. Terrible. I went on vacation for four days and slept in a wonderful bed and I had no RLS for those four days. I just could not believe it. So I checked the bedding and it was all cotton sateen sheets. I found the vendor with ChatGPT and I ordered the sheets and I came home and I ordered a dupe cotton comforter (the hotel one was too expensive) with a cotton exterior and an all cotton duvet with ChatGPT‘s help. I have been home now for two days with this new bedding and I do not have restless legs and I am in total shock. I am praying to God that this is a cure for me. I think I was too hot at night with my bamboo bedding and my microfiber comforter. So I have a suggestion for anyone with RLS to try to check out your bedding and get rid of microfiber, polyester, and go all cotton bedding. I can post what I bought, which was not too expensive and the actual sheets I slept on if anyone is interested. I am in shock so far and I pray that this is not just something intermittent. I keep my AC at 70°. I also sleep with a fan on me. I think the microfiber bedding was making me too hot at night and I did not realize it. My feet and legs feel wonderful with this cotton bedding. I thought bamboo would keep me cool, but the cotton sateen sheets are just wonderful.

Hi all, in my early twenties I developed what I was told was RLS (restless leg syndrome) when I was switching from Cymbalta to another medicine for depression/anxiety episodes. It started in only my left leg and hip where I would feel a jolt down from my head into my left lower limb, hip calf and foot. It only occurred before bed. It was often but not every night. I was prescribed Requip and it seemed to help but caused next day impairment where I didn’t feel safe to drive, heavy fog almost like I was poisoned. Same with Mirapex. Later around this time I was prescribed promethazine with codeine for an injury and it caused immediate attacks, had to stop it immediately, this also made me feel “poisoned”, terrible increase in symptoms. Doc ordered brain CT which came back normal.

Fast forward to my late twenties the episodes became more frequent and progressed into my upper limbs and neck to the point I would twist myself to cope with the agony of the feelings and muscle contractions. The jolts sometimes cause involuntary jumping of the affected muscle. I was prescribed Gabapentin with no relief same effect from Pregabalin. I also started noticing urinary hesitation and increased urination at night which may or may not be related, unsure. Doc ordered brain and spinal MRI which only shows mild stenosis in my cervical spine.

Fast forward to my mid-thirties and these attacks became pretty much every night and also more often during the day. Symptoms have expanded to having: a sensory aura (feeling like something is misfiring in the head) before they start, hand stiffness where I feel a need to sort of claw my hand, and more upper body impact from the jolts and contractions. Still start primarily in the legs, hip, and feet. I brace myself when a jolt happens otherwise my back sort of thrusts backwards. The attacks ONLY start happening while either lying down or sitting. This year I learned my father has Parkinson’s (action tremor and shuffled gait as primary symptoms which started 5 years ago and he is also almost entirely blind at age 65).

Doc started me on a low dose levodopa/carbidopa trial which is the first thing that seems to be very helpful and without side effects. It kicks in within an hour and lasts up to 3 hours. I take it with lemon balm and it seems to entirely block my attacks, at least 90% of the symptoms.

An attack goes like this:
Each contraction lasts up to ~10 seconds
There can be seconds to ~ 1 minute of relief, then another contraction
It can hit the same muscle or migrate to a different muscle
Sometimes the contraction produces an actual limb movement; sometimes it is simply a sustained tightening
It can continue for hours disabling ability to rest and fall asleep.
It is particularly problematic when trying to fall asleep. No issues staying asleep after falling asleep.
No urge to move the legs, rather a desperation to stay still.
The attack ceases while actively walking.

When attack spreads to upper body now I start doing things like finger tapping, head bobbing, grimacing as sort of a reflex to cope with the muscle tension. Left eyelid twitches also present.

I just got results to a Parkinson’s genetic panel which came back negative, next they’re doing a dystonia panel. Normal iron, ferritin, absorption rate and other labs also normal. Ceruloplasmin (copper) normal. Waiting on results to heavy metal lab which seems to be taking quite awhile to get it back.

Neuro is calling this either “Severe RLS with dystonic features” or “dopa responsive dystonia” for now and we are ruling out a form of Parkinson’s or parkinsonism. Common genes for causing DRD came back without mutation.

I’m happy the medicine is helping however I want to understand why this is happening to me. My worry is neurodegeneration and ruling it out. I’m being referred to an academic movement disorder specialist. What do you think the next steps should be as a mid-30s person who doesn’t want this to get any worse? I’ve had to explain to docs that it truly impairs my ability to rest, people can’t sleep with me in the bed because they tell me I “appear possessed” without medication. Before the new med I would literally moan and yell out from the attacks.

This year I’ve been getting attacks more frequently earlier in the day. Years ago this was very rare to happen. Please let me know if this aligns with any known condition other than “severe RLS” or “DRD”. Thanks

Disclaimer: I am not asking for medical advice I am asking if anyone believes these symptoms correlate to any known condition and I will not discern any responses provided as actual medical advice.

Early morning now here in the UK and left leg been at it for 8 hours non stop .Taken as many meds as allowed Pregablin and a Clonazepam plus Paracetamol. Put on my Therapulse massager but nothing working tonight. .Think being over tired has triggered it .Anyone else suffering tonight?

Hey all this reddit has been super helpful, I dont sleep most night (maybe an hour or 2 and then another hour during babys nap). Doctor is doing bloodwork today im kind of hoping it IS a nutrient deficiency (mine became worse during pregnancy and postpartum but prior was pretty bad during my monthly cycle.) She said that if my nutrients look okay that we might try gaba to help. Just thought id give an update into my own situation, I was nervous about the doctors because im about 5 pounds overweight and the doctors ive had in the past have dismissed my concerns due to weight, but today it wasnt even mentioned!

I have recently started cold plunging and it feels great for my health overall however I haven’t noticed much of a change in my RLS symptoms. How have you all felt?

Hi everyone. I’m 57F in the UK. Had RLS for 20 years. No meds yet but it’s getting unbearable. Has anyone tried (medically prescribed) CBD with THC for their restless legs? If so, did it work and how did you find the right dose for you? I am trying this before giving gabapentin a go but still on low dose and I’m not sure I’m getting the best out of it yet. I have done all the other stuff (ferritin is above 150), magnesium in various forms, no ADs or anti histamines, no caffeine, cut down on alcohol, etc …Thoughts appreciated. 🙏

My mom (54) has had a severe case of RLS for years now. She started having symptoms in her twenties, and despite treatment, it kept worsening. She saw different neurologists in Belgium and did multiple studies. They say there's nothing they can do for her anymore.

Last year, she was able to manage her symptoms by taking 3 Sifrol (pramipexole) in combination with Oxycodone (opioid) every day. However, her symptoms would gradually return, and she would eventually hit the limit of 3 Sifrol + 3 oxycodone.

When that stopped working, she was prescribed 2 x Lyrica (75 mg pregabalin) in combination with 3 Sifrol and 1 Rivotril. It's managing her symptoms for now, but she is terrified that it will eventually stop working as well.

When the meds stop working, she can go days without sleeping because of her legs. She’s been to the ER multiple times begging for help, but her neurologist says there’s nothing more they can do. I’m really worried, especially because she’s still so young. She’s also dealing with narcolepsy, and this just isn’t sustainable long-term.

My goal is to figure out a path forward that doesn't include using more and more (dangerous) medication cocktails. Can anyone relate to this story? Any tips or recommendations? Or does anyone know about any RLS experts in Europe that she could speak to? Or trials/studies/alternative methods? Appreciate all the help.

I have medically induced RLS for 6 years already. For this period of time I had no night without waking up from RLS. A couple of months ago I started drinking coca cola almost every day, because it felt nice to have cold drink in this heat. And I noticed that I started sleeping the whole night without symptoms. Night by night. Than I was trying to make sure that it is really somehow connected to cola because it sounds weird, and yep the day I wasnt drinking it my symptoms were coming back. Also I noticed that If I drink this in the first part of the day it also doesnt work that much, the most effective way is to have it in the evening.

It was fascinating for me. I hope my stomach gonna survive. I assume its connected to caffeine in cola, I have cola zero - with no sugar, but with caffeine. Wanna try have coffee in the evening and check the effect. And this must be connected to dopamine which is the main reason of RLS. I hope it could be helpful for someone🙏🏻

58F. The creepy-crawly started in my legs about 4 years ago the second I'd lie down, and it slowly took over my nights. I've been through ropinirole, then gabapentin, iron pills, iron infusions, magnesium, the whole list, and I'm still up pacing the kitchen half the nights. My husband's been in the guest room over a year now.

I don't want a miracle cure and I'm honestly skeptical of anything that promises one. I've been reading a lot here and some of the stories are discouraging, though I think maybe the people who found something that worked just don't come back to post. I'm trying to find the honest middle ground.

So for those who got this under some kind of control, whatever it was: looking at your life right now, was it ultimately worth what you went through?

What are the specific things you can do now that you couldn't before, sleeping in the same bed as your partner, sitting through a movie or a flight, not doing dose math every night, that make you say "100% worth it"? Are you living the life you thought you'd lost?

Thanks in advance.

I've had rls for 28 years and been through all the other major meds. My MD is gone until 9/9. He hasn't really been all that much help. The nurse, who can't change a script, has been more help. After months of living hell, I finally got the dosage for Oxycontin right (10 mg at 9pm; 2.5 mg of IR at 10 pm.) That's worked for 5 nights, if you don't count tonight, so my respite might be over. I can hear the torturer at the door.

Anyway, prose aside, and assuming it will start working again; Medicare is denying the Oxy script, even with a Prior Authorization. Does anyone know if resubmitting it will work?

I haven't had any problem with the Oxycontin, as long as I take it at night. I hope this night is an exception and I'll go back to being able to sleep. The MD who's covering for my person has suggested methadone but I've heard terrible things about it. Also, I tried it years ago, but no one has said they looked at that MD's notes to tell me why I didn't keep taking it or what the dosage was; I know I was taking it because I still have some.

Things have been so hard and their still not great. I have a lot of rls from 6-10, but even though I could take more short acting, I don't because taking too much gives me migraines. I just don't feel strong enough to go through another transition. And I can't pay for it out of pocket, $200/mth! I have Good RX, bu the problem is the Prior Authorization. I really resent this; decent medicine, another privilege of the very privileged.

Anyway, I also know and have been told that methadone is hell to come off of. The really bitter pill is that I probably would never come off it. Or if something better comes along, I'd be on a very high dose at that point, which makes coming off it even harder. I've also heard its a much more toxic drug. The upside seems to be price and maybe duration, it could last longer.

But the transition! Working out how much to take and coming off the Oxy, I just don't think I'd make it through. I'm completely worn out. I had a precious 5 nights of 6 hours of sleep a night. I don't want to give that up. It really feels like a rock and a hard spot.

I started feeling RLS symptoms over 8 years ago, before COVID. At first**, it came** and went, but with time, it increased. Last year**,** I couldn't sleep most nights. I tried medicine for veins at first, then different creams and gels. Nothing was helping. Then I tried magnesium; it helped a bit for a while.I visited doctors three times**,** and all of them prescribed blood flow medication against atherosclerosis. It wasn't helping at all. I had an ultrasound done, which came out normal for my age. Finally**,** I came across some reports about Pramipexole. And it helped almost immediately. So I was happy, but I didn't like my mood. Sometimes I was productive and happy**, and** sometimes not. But sleep was ok. However, I had to increase the dose. I decided to do my own research. And finally, I found a diet that let me stop taking medicines for now. Now**,** I am taking iron supplements—two pills a day, 40 mg each of iron chelate. And more importantly, I eat 300 grams of pork liver in the evening, and around 100 grams at lunch.

It may sound anecdotal, but after a week or two of such a diet,I was able to sleep without any medication. I know that it may not be the best diet,and I have researched about it. But if I miss one day,I wake up in the night and have to take medicine again. So I stocked up my fridge and am not missing a day. I don't like it; I just replaced the pills. I am writing it here because I know how depressing it can be. And I tried the iron supplement alone and the liver alone. For some reason**,** it didn't work. Only when I eat them on the same day did .

things change gradually, not in one day. It took me a week or two to feel the difference. I just cook it on an iron skillet with onions. Just sharing. Maybe it will help someone. Cheers.

I made a spelling correction in Gemini.

English is not my first language.

So little back story:

My MIL is 61 - in March of this year she was sent from her RLS specialist to a dementia specialist because of her symptoms she reported.

Leading up to March she started getting very dizzy, so much so she went to the ER because she was so concerned and couldn’t wait for her ENT appointment in 2 weeks (another specialist this RLS specialist sent her too).

She also was experiencing extreme hallucinations (hair growing out of the walls, dead bodies in her living room, doorknobs moving, bugs on the wall, etc), sudden “black outs” and falling asleep out of nowhere - even while driving. At this point she was too scared to drive until we figured out what was going on, and she lost her job because she had no way to get to work. This caused even more issues because she is on a fixed, low income.

Cherry on top, it also caused excessive spending habits where she has built up quite the financial issue for herself, and has also gained about 60-80lbs due to binge eating.

She also had started falling multiple times when she would wake in the middle of the night use the restroom & busted her face open on her night stand.

By March, all of these symptoms had been reported to every doctor she had been seeing, and when we talked with the RLS specialists she jumped to dementia and since then we have been in the emotional roller coaster of her potentially having dementia.

Fast forward to about 5 days ago, we are told the only way to confirm her dementia diagnosis is through a PET scan that would cost us $5k to have done due to her insurance. Keep in mind, we’ve been paying for appts and specialists since this potential diagnosis and considered moving her into independent living to give her more support, even though every test was coming back normal.

I got so fed up with everything we were spending on these doctors for everything to come back normal and just took a chance asked her to send me her medication list. The only one I didn’t recognize at the time was pramipaxole. When I saw from a 15s Google search what side effects could come with this medication I was FLOORED. But not only that, the dosage in her bottle was 1.5mg 3x a day, prescribed by the RLS SPECIALIST.

I very quickly discovered this is the max dose for Parkinson’s and have learned just about everything that comes with a dopamine-agonist, augmentation, and long term use of these drugs. Every single thing she reported to multiple doctors fall under warnings for this dosage and not a SINGLE doctor questioned this - and yes they had this dosage in their charts.

Turns out, she’s been on a dopamine agonist since at least 2021 (this is as far I’ve been able to go back on records so far) where she was maxed out for Requip with in 2 months. She stayed on that 4mg requip medication for 5 years before being moved to pramipexole, where she was started at .25mg at night and was bumped to 3mg within 2 months due to it not working at the lower doses. This increase happened 1 month before her first sleep attack episode behind the wheel.

Here’s a couple more kickers:

- she’s also on 150mg of an SSRI, and has been on one (at a lowers dose but still) for 20+ years.
- the prescribing doctor wrote the script for 3mg (1.5 AM & PM) but the pharmacy filled it incorrectly at 4.5mg for 8 months. The only reason she didn’t end up taking 4.5 is because she said she forgot to take it at lunch all the time and luckily only ended with 3mg consistently.

** I have a couple questions for real people, not the doctors that are now terrified of what could potentially be a malpractice issue and are only giving politically correct answers. **

1. has anyone ever heard of being prescribed this dosage? And if so, did your dr tell you not to drive?
2. what should we expect as she comes off this slowly? (We are titrating her off this over the next 3-4 weeks)
3. what alternatives have you found that help RLS symptoms?

We feel like since discovering this and bringing it to her doctor’s attention, nobody is concerned or alarmed like we are, so maybe we are missing something?? But I can’t find a SINGLE medical journal or literature that supports this dosage for RLS.

I’ve always been really skeptical of supplements. But I recently discovered I have an actual deficiency of B12, Folic Acid, and D. My Iron and Ferritin are both completely fine. It seemed plausible that my RLS was also caused by a deficiency and with Iron and Ferritin ruled out Magnesium seemed like a good guess.

The supplement that was working also had ashwagandha and tart cherry. Has anyone had success with either of those? Or do I have to go back to the influencer gummies?

I’ve been reading the new 2026 Mayo Clinic RLS management algorithm, and it looks like the recommendations for iron treatment have changed massively. They now say IV iron should be considered for any chronic RLS patient with ferritin 75–300 μg/L and TSAT <45%, and that people with ferritin 100–300 respond just as well as those below 100.

This is very different from the older UK/NICE approach, which usually only considers IV iron when ferritin is <100 and TSAT is very low.

Has anyone in the UK actually managed to get IV iron based on this newer evidence?
Did you go through neurology or haematology?
And is there anything specific you said or brought (e.g., the Mayo paper) that helped?

I’m trying to figure out what’s realistically possible within the NHS and whether anyone has had success getting IV iron for RLS with ferritin in the “normal” range.

Would really appreciate hearing your experiences.

Reference: An Updated Algorithm for the Management of Restless Legs Syndrome - Mayo Clinic Proceedings

Iron and ferritin results came back normal. My hope was that iron was the cause of my RLS. Oh well, now doc can begin drug trials hopefully soon.

I’m a bit scared seeing how some drugs eventually stop working. Is there a drug progression or they just try something to see what works?

Hi , I am only posting this because I haven't found anything like it. I get a RLS leg spasm that, builds and builds and builds and then discharges as a leg kick. It feels exactly like an electric shock sort of thing. It obstructs my sleep occasionally but it isn't as bad as most of the folks I follow online. The general consensus is that it's the result of an injury to my lower back. The thing is that the leg shock is really not unpleasant. It doesn't necessarily feel good or bad usually. Sometimes though the autonomic spasm sometimes does feel good . I have held that back when I talked about it with my doctor. Has RLS ever felt good to anyone?

I use Restex for my RLS. Whenever I use melatonine for sleep I feel like Restex does not work.

Does anyone know anything about it ?

How long did it take for you to feel better after quitting pramipexole?

I took it for 4 years and my doc is firm on either quitting or staying on it without trying other medication (thanks Germany). My symptoms got 1000x worse on it so i just quitted from lowest dose.

No one told me how awful it will be, but it still feels better than pramipexole evolving my rls and plmd

Edit: with feeling better i mean okayish sleep, no awful mood problem, memory issues etc