r/RestlessLegs

I started taking it because ever since I went through a near death experience and woke from a month long coma, my RLS (restless leg syndrome) has ruled my life. I had RLS before but not to the extent where it would even cause my hand to have tremors. This all started at the end if 2021. Its just progressed to the point where i just couldnt sleep unless i drugged my self with what ever i could find Benadryl, cough syrup, i even tried getting meds from doctors they would prescribe. They would put me to sleep but it felt like the worst sleep and on top of it I would wake up like a zombie dizzy hardly coherent. It was better to not sleep then to be that. Not to mention I have pain in my chest from my injury and causes me to cough all the time and hard too really wicked nasty. So im uncomfy all the time but gets worse toward the end if day. Mind you im a very stubborn willfull human. Probably why I survived the whole ordeal plus my Lord Jesus.

Fast forward a few years latter i hear about Kratom and im like fuck it since i cant get prescription pills ima try this whats the worst that can happen? Im feeling shitty all the time, cant keep or find a job for various reasons at the time do to health.

First time i tried it didnt do anything (didnt take enough actually. Took two pills from a container i bought).
Two weeks later tried it again. Felt like i took 30mg of norco and was spiraling. But got hella good sleep. Then i got sleep apnea and blamed kratom and stopped taking it for almost year.
Decided to take it again and did a whole bunch of research and experimenting. Found that 5grams was a sweet spot for me. No sleep apnea and no restless leg syndrome.
I have been sleeping really good for almost a year.
Its been so good I got confident enough to try and not take it twice in the last two weeks hoping my ailments of RLS were gone.
The first night the RLS kicked in like normal and the second time i thought i was good i went to bed after a long day of moving and a concert even got some amazing head before bed and thought sure fire I dont need it and went to pass out.
I woke up with a panic attack and crazy RLS full swing. Immediately went for some magnesium (RLS is supposedly linked to iron and magnesium absorbing process deficiency) and Kratom.
15 mins later all better as I type this.

Curious if anyone has used Kratom for RLS and or any other debilitating health conditions.
What are treatments.?
I dont like the idea of being dependent on this but i have yet to find a doctor that could help me and ive tried so many things that it get discouraging.
Kratom has really been a life saver for me but I hate being in any situation like when i went camping and i forgot to bring it and destroyed my weekend.

Don't take pramexipole(sifrol) it can ruin your life. It did it to me and now I have to live with the consequences.

TW: mention of ending life through medical intervention

Like most of you, I’ve had RLS for a while. It was intolerable, my Dr (I’m realizing how lucky I am) has prescribed a mix of opiates, benzos, and Gabapentin that seems mostly effective.

The only time it seems to stop being effective is when my iron gets “low”. That’s in quotations because for me, low means hemoglobin under 130 and ferritin under about 150.

The only reason I knew to ask for iron was a sleep specialist noticed how much I was struggling in an in-clinic sleep study and said it would help. We tried oral, for some reason it makes me throw up (violently).

I’m struggling with extreme pushback trying to get the IV iron my symptoms and Dr say I need, partially because of the test results above. We stopped submitting blood tests because those were being used as an excuse to deny me the infusions, which of course is now being used to deny.

I’m in northern B.C., so it’s the publicly funded and chronically overworked clinic that I’m talking about. Privately it’s 2-3 thousand each time I need an infusion and I can’t do that.

The last time I tried to get an appointment the nurses were outright mocking me when they thought I was on hold.

I’m tired, my legs are driving me crazy, and I can’t take this. We do have medical assistance in dying here and I meet the criteria. I’m just frustrated that I’m going to die because of bureaucracy and bitchiness. The iron works. But I can’t access it.

I guess I’m just looking for ideas and/or commiseration. It would help to know someone gets it, that I’m not just whining, that this is torture and what the nurses denying my Drs requests are putting me through.

I had terrible symptoms a few months ago when transitioning birth control, and people recommended gummies (legal in my area). I try not to use them often, but they usually helped a ton.

Last night I took a gummy that made my symptoms 100 times worse. I wonder if it just made me overtired? But I have no idea what changed.

Anyone have this mixed experience?

Do you use Methadone for RLS?

How long have you been taking Methadone?

Do you take only Methadone or do you take it with other medications and/or supplements?

How many mg? What is the dose that you take?

Do you take the entire dose at once or do you split the dose?

What time of day do you take it?

Do you still wake up in the middle of the night while taking Methadone?

Do you still have leg spasms at night?

How many days or weeks did you take Methadone before you noticed improvements in your RLS?

Do you experience any side effects?

Did you increase the dose?

Hello everyone
I was having severe pain in feet since 2 months and recently my doctor told me it’s RLS.
What can i do to sleep at night , when there are pain episodes, they keep me up for 3-4hrs in night and I am getting very low on energy now.
Pls help.
Thanks in advance

A bit of background. I've had RLS my entire life, as long as I can remember. I didn't know it was a thing until I was about 27. My PCP put me on Requip of course. Started low. Ended up over the years going up to 6mg. Eventually switched to 6mg Requip XL which was a little better. I've had the same augmentation issues. I'm 48 now. I am seeing a movement specialist neurologist who is weaning me off the Requip. I'm up to 1500mg of Gabapentin, 75mg of Tramadol and down to 1mg of Requip. I got a medical marijuana card. Oddly enough, it seems to help while the THC is active, but when it wears off, the RLS comes back with a vengeance and worse than before so I don't try that anymore. My iron is not low. I avoid anything with diphenhydramine. I take no antidepressants with sleep aid off label uses because they aggravate RLS. I don't take any either way. Hot showers seem to help briefly. Soaking in a hot tub does as well briefly. I can go run or walk until I can't anymore, but as soon as I sit down, the RLS pain starts. Magnesium. Potassium. If there is anything not prescription related for treatment or relief, I've tried it.

It's still horrible. I get it during the day. I get it in both legs and both arms. Painful, painful need to move my arms and legs. It's not just a tingling or ache. It's pain, constant pain and agony. I get super hot. I crank the AC down in my house to 65 and I'll be sweating and freezing at the same time. So many nights I can do nothing but pace around my house for hours on end to keep the pain away. I will eat anything and everything I can find or make in a vain attempt to make the pain stop. 7-11 should not sell pizzas at 2:30 AM.

At my worst I was not sleeping at least four nights a week. Now it's two or three. It's affected my job. It's ruined my relationships. It's made me decide to that I wasn't going to have any children because I don't want to pass it on. That's just not fair to anyone. No one I know has it and can possibly understand the agony I'm in. It controls and ruins my life. I'm going to be brutally honest. I have considered what I call the nuclear option. If that's unclear at first, think about it. You'll figure it out. I've fought this for so long but I'm getting tired.

At this point, I don't know what else to do other than I am trying to hold out a small bit of hope that my neurologist will make something work. This going down to 1mg of Requip has been super hard. Any suggestions considering what I've listed and tried so far?

I’m curious if any of you have taken Methadone only temporarily (for a month or two) while tapering off a dopamine agonist like Pramipexole, and then successfully gotten off the methadone and transitioned to something like Pregabalin or Gabapentin?

My fear is that once you start methadone, you never get off it.

Also, what dose of methadone do you take to manage your RLS?

I was recently diagnosed with MCAS and started taking Cromolyn three times a day. I haven’t noticed too much of effect for my other symptoms but omg the creepy crawly restless legs feeling I have all over my body (but especially in my legs) has gotten so much better! I’m unsure what has happened but I’m so relieved.

Just curious if this has happened to anyone else.

From what I’ve read, they all eventually damage your brain and stop working sooner or later.

I’m taking 300 mg of gabapentin and it’s not working anymore. I wake up after 3–4 hours of sleep every night with a restless body and can't return to sleep

I know I probably should increase the dosage, but I’m scared. I don’t want memory issues or to feel weird I just want to live a normal life.

And I live in France where doctors seem to hate gabapentin for whatever reason and prefer pramipexole, so I’m not even sure they would agree to increase my gabapentin dose.

Also, what happens when you eventually reach the maximum dosage ?

I was diagnosed with RLS in 2021 and put on pramipexole - which worked for almost two years. Then it started to augment and my legs would start to itch badly and I started to sleep very poorly until I took more. I got off pramipexole (painful to get off) and just tried to cope. Discovered if I pedal for 15 minutes or do 250 stairs they would settle down - usually for at least an hour or two. But I got to the point where I would get up 3 to 5 times a night - just trying to sleep in between- not sustainable. Then I tried pregbalin which only seemed to work a few times for me - and it wasn’t helping me sleep like the doctor claimed it would. Fast forward to 2026 - I started to see a homeopathic who did a GI test. He saw some unusual zonulin numbers that indicated i had some form of leaky gut. I knew that I had leaky gut at one time and that gluten likely caused it. I had been off gluten for several years and thought my gut was better. At any rate my homeopathic prescribed me with larazotide - which tightens the junctions in your gut ( my interpretation). Bottom line it has been life changing - i have virtually no RLS anymore. I can’t tell how many times I have laid awake scouring these archives for anything to help. I have no idea if this can help anyone else but it has certainly helped me - with no side effects that I can tell - and I wanted to at least share my experience.

I have mild RLS and severe PLMD (60-100/hr at the beginning of the night). I got an iron infusion which seemed to help. My next sleep study noted very little plmd. I'm also taking 300 mg gabapentin.

Then had a major invasive surgery on my jaw to treat sleep apnea. 3 months later, and I have the worst RLS I've ever experienced. It's brutal. It's all day, all night. Kicking is insane at night and making this surgical recovery very hard. My legs physically ache, never experienced that. They are also twitching uncontrollably all day long. I am up during the night trying to will them to stop. That is RLS as well?

Ferritin is now low again, and I will get another infusion soon.

Has anyone else experienced this after surgery? Is this common? I need hope.

Been having some anxiety and depression lately and wanted to try Wellbutrin since Lexapro aggravates my RLS. But I’ve also heard that for people with anxiety Wellbutrin can be awful.

Anyone on here who has primary anxiety and secondary depression tried Wellbutrin?

Did anyone continue with medical marijuana after starting Methadone?

I currently is CBN/CBD gummies to help with my insomnia. Doesn’t do anything for my RLS (worsen nor relieve).

The ones I have, have a small amount of THC in them. I know it is advised to not drink or use marijuana while on Methadone but 2.5mg is way different than the higher doses for severe pain or opiate withdrawals.

Did anyone try this dosing method of potassium citrate? Stumbled on the publication randomly, but the results are wild.

https://medcraveonline.com/PPIJ/use-of-potassium-citrate-in-restless-leg-syndrome-rls.html

Quote from publication:

On 0-day 52 patients (76.4%) shown moderate RLS and the rest 16 patients (23.5%) shown severe level of RLS.

After 15days 37 patients (54.4%) shown no RLS (“0” mark), 20 patients (29.4%) shown mild and the rest 11 patients (16.1%) presented with moderate RLS.

At the end of one month 37+20=57 patients (83.8%) shown no RLS and the rest 11(16.1%) shown mild level of RLS.

At the end of 45days therapy 57+11=68 patients (100%) shown “0” mark in the VAS of RLS

I’ve been on ropinrole for restless legs/perodic limb movement disorder for many many years. A doctor explained augmentation and I’ve been reducing with GP help while slightly increasing my pregablin which I’m on anyway.

I’ve made it down from 500 to 0 ropinrole thanks to my doc.

I’ve been 4 days free. BUT my god am i suffering at night. When jeesing the toilet legs have me awake then
It’s usually a good 2/3 hours before it calms so i can sleep.

I’m exhausted and ready to give up.
(I’m disabled and on a fair amount of independant medication)

Any help is massively appreciated.

Edit: I should add I’ve tried the sock round the foot thing. I can also at times feel the agitated nerves. Such as if I scratch an itch lower body that fires the nerves and triggers symptoms)

hi, i’ve had a completely unexplainable pain in my legs for as long as i can remember. the best i can describe it a burning/aching pain. its very hard for me to explain it. it’s so bad that it would keeps me up at night.

when i went to the GP as a child, i was dismissed that it was “growing pains”. i would cry trying to go to sleep because i was in that much pain. i’m now 20 and still complain about it. it hasn’t gotten better. i went to the GP last month and i was told “it’s just one of those things you have to live with”.

it seems to appear after i’ve done a lot of walking, while i am resting. sometimes in one leg. sometimes in both. i am anaemic.

i however have no “urge” to move my legs and i don’t feel any relief when i move my legs. if anything, the pain worsens when i move. it’s just constant pain when it starts and doesn’t disappear until i fall asleep out of exhaustion.

could it be RLS? or maybe something neurological?

thank you 🙏

I’ve had restless leg syndrome all my life. I’ve had multiple doctor visits with multiple prescriptions, such as magnesium, iron, and pramiprexole. I’ve tried others options like massage boots, different sleeping techniques, diet and exercise changes, etc. I have it really bad in my wrist and ankles and everything I have tried has not worked to any noticeable degree. I have had multiple bouts of insomnia because of it, and it is genuinely ruining my life due to such poor sleep. What can I do?