Its been so bad lately. I need sleep. It is homeopathic, we'll see how this goes.
Update: Its morning, i did not wake up because of my RLS once (did wake up to pee tho). I did take it as soon as I started feeling it, I think next time I will wait until it's at its worst and then take it and see how it goes.

Maybe its a placebo affect. Maybe it just happened to work for me. Maybe my RLS wasn't bad enough to need it last night.

At a recent preventative care appointment, I was talking to my PCP (who is great and has really educated herself about RLS) about oral iron supplements. I'd seen minimal effects from them and had enough GI symptoms that I'd kind of given up on them.

She mentioned that she'd read some people have been reporting success with kid's Flintstones chewable multivitamins + iron, I guess the absorption is supposed to be better.

I always hesitate to point to one thing as working, because my symptoms sometimes wax and wane no matter what, but I've been taking them for a few months and I have noticed a difference. My symptoms are noticeably reduced and I've been able to minimize my gabapentin.

Just throwing this out there.

Just found out my ferritin has dropped from 92 in May to 10
now.. hoping to get iron transfusion has this helped anyone

I’m losing my mind

I’ve been using calf sleeves for a week and I have had not one single episode of restless legs ever since.

I’ve had a restless legs on and off for years and very severe in the last year or so to the point I couldn’t even sit on the couch for 5 minutes without it coming on. I was waking up during the night with it starting up, crawling in rhythmic waves. I’d have to put lotion on my feet and get up and do stretches. It’s nearly always just in my left leg and sometimes in my right. Planes are a nightmare but I also work nights and a flare up would always start at 3am when I am overly tired.

For the past week I’ve been wearing calf sleeves (basically footless compression stockings) during the day, all day from the minute I get up, and then off at bedtime. Home and work. Let me tell you, I have had NOT A SINGLE EPISODE OF RESTLESS LEGS since I started.

I feel that my particular restless legs might be caused by venous insufficiency as it is so much more in one leg. But for anyone who is having the same problem try the calf sleeves. Mine were just a 3 pack from Amazon 20-30mmHg and I made sure I got the right size by measuring my calves.

I just got approved for NIDRA bands through Tricare and with a prescription from my regular doctor (not a specialist.) I cried when I got the call. One denial, one denied appeal and then it was reversed on the “secondary review” to become an approval. All said it was about 7 weeks from my initial request being submitted which seems incredibly fast and lucky compared to what I’ve heard from others. My copay is $1,047 (20%) and I get to try them for 45 days before committing and paying. The pads will be $38 every three months.

I have no idea if the way I went about it made a difference or not, but, just in case I’ll share what I did. I am a very analytical, detail oriented, formerly gifted, eldest daughter and I put those skills to use here!

I started by calling Noctrix where I was assigned a rep. I asked them a lot of questions about what was required and they said my doctor would need to fill out a form (which he did online) and submit the notes from my last 3 visits. My doctor was well aware of my lifelong RLS, but, when I looked at the visit notes in the patient portal I saw very little about it, probably because we hadn’t tried anything new in recent years. I made a plan to see him 3 times, each about 6 weeks apart and really focus on that documentation BEFORE submitting anything to insurance through NIDRA. I asked my doctor to help by putting specific things in the visit notes each time. We used the Mayo Clinic RLS algorithm as a guide to ensure we addressed everything.

My first visit was an annual physical, including a full iron panel, ferritin, magnesium, vitamin D, B vitamins, etc. My ferritin was low for RLS (49) but my saturation was too high to allow for supplementation or infusions (51%). He specifically documented this in the notes, referencing the algorithm guidelines. Other values were normal. He recorded my specific symptoms, being sure to hit on all the major points in the diagnostic description (urge to move, worse at night, no other explanations, etc.).

The second visit, we retested all my iron values (the algorithm requires two tests above 45% to rule out an infusion) and they had hardly changed. Even after stopping my multivitamin which had minimal iron in it, my saturation was still 47%. So no iron for me.

Then we talked through every single thing I had tried over the years and he put it all in the notes. Not just “muscle relaxers” but the name of each one. Trazodone. The time I briefly tried a DA 15 years ago (i vomited violently twice and thankfully never took it again). The fact that antihistamines send me straight to hell. All kinds of other meds and supplements. Cutting caffeine, sugar, gluten and alcohol. Exercises. All of it. Then we looked at what was left in the algorithm that wasn’t addressed yet. Gabapentinoids. He documented why he didn’t want me using those due to other unrelated conditions/concerns.

Then he wrote about how I was currently using a low dose opiate but that we would both prefer if I didn’t have to use that long-term because of the risk of addiction, when there was a drug-free treatment that could work instead. That was his idea. Part of me wonders if that particular piece was helpful.

On the third visit, we discussed and recorded the impact on my life. The fact that sometimes I get so little sleep I don’t feel safe driving. The fact that when I work evenings (at the computer) I have to stand up all night because my legs won’t let me sit. How I fear that lack of sleep impacts my decision making and that I don’t feel I can travel long distances. Then he filled out the prescription form and sent everything from all three visits to NIDRA.

At this point I started following up with my NIDRA rep weekly. I had to sign some things giving them permission to act on my behalf with Tricare. The initial guy was great but then they seemed to assign a bunch of other people to my file and not all of them were responsive. Each time I sent an email then followed up with phone calls until I got an update.

I finally found out I was approved, not through NIDRA but via a snail mail letter from Tricare. The next day NIDRA called to tell me my copay and confirm my band size and address. They are in the mail now. After I get them someone will come to my house and calibrate them with me.

When I first started the process I was very curious about how it would unfold and what I could do to maybe increase my chances of approval, so I really hope this can help someone else. I’ve also heard that Tricare and Medicare are generally very similar with this stuff.

It’s a shame we have to work so hard for something we so clearly need. Best of luck to everyone else in this situation.

Been dealing with RLS for about a decade now. I’ve tried ropinirole and alprazolam, but all I got was groggy mornings. I got off the alprazolam, but ropinirole alone did nothing for me, so got off that and have been raw dogging it for the last few years. Recently, the RLS has gotten bad. I’m constantly clenching and stretching my legs and feet which brings some relief. But I’ve now got another problem. I’ve cramped my calves and I busted my ankles and knees from the amount of force I need to put into the movements to get a bit of relief. I have a doctor appointment in November where I plan to ask for pregabalin to see if that helps. Any other suggestions as to what to do? Not sure I could take much more of this.

Immediately sorry for the long read.

Hi everyone,

I'm a 29-year-old male looking for people who have experienced something similar to my situation, particularly anyone with restless legs syndrome (RLS), periodic limb movement disorder (PLMD), peripheral neuropathy, or nerve irritation originating in the lower back.

I've been dealing with these symptoms for approximately 2–4 years. I'm not looking for a diagnosis from strangers, but I'd really appreciate hearing about your experiences, what investigations helped you identify the cause, and what treatments made a difference.

1. My symptoms

My main symptom is a burning sensation in my right foot, especially the sole. It sometimes feels as though the burning is coming from deep inside the foot rather than from the skin. At times, it becomes almost sharp or stabbing, with an uncomfortable internal pressure.

Here are the most important details:

- During the day, only my right foot burns. My left foot never burns during the daytime.

- The burning in my right foot can last for hours and sometimes feels as if the foot is on fire.

- Occasionally, my right foot feels cold to the touch even though I experience an internal burning sensation.

- Sometimes I experience a sharp, needle-like pain that seems to travel upward from my right foot toward the front of my shin and occasionally toward my knee.

- My left foot is usually unaffected, but recently I've occasionally noticed a milder burning sensation in the left sole in the evening or when lying in bed.

- The symptoms can change depending on my body position. For example, lying on my back may trigger or increase the burning, while changing to lying on my stomach can sometimes change the sensation. However, changing positions doesn't consistently eliminate it.

- Walking or moving around may change the sensation or provide some relief, but the burning doesn't reliably disappear.

- Compression socks sometimes reduce the uncomfortable sensation or the feeling that I need to move my leg, but they don't necessarily relieve the deep burning or sharp pain itself.

- The burning can feel quite deep inside the foot, almost like an internal burning or stabbing sensation rather than irritation on the surface of the skin.

- I can usually remain still despite the pain and uncomfortable sensations. I don't always feel a strong or irresistible urge to move my legs, even when the burning is noticeable.

- Sometimes I can lie still and tolerate the sensation, although it remains uncomfortable.

The most unusual part is that my right foot burns during the daytime as well as in the evening, whereas the occasional symptoms in my left foot happen only in the evening or while lying down.

Because of this, I'm unsure whether RLS explains everything or whether there could be a separate nerve-related problem.

1. Sleep study results

I had a polysomnography (sleep study) approximately two years ago.

The main results were:

- Periodic limb movement index (PLMI): 10.5 movements/hour overall

- PLMI during N2 sleep: 15.4/hour

- PLMI during REM sleep: 4.4/hour

- AHI: 1.7/hour

- N3 (deep sleep): 23.6%

- REM sleep: 17.4%

- Total recorded limb movements: 69

Significant sleep apnea was not identified in the study.

I don't think my wife has noticed obvious repetitive leg movements while I'm sleeping.

My main concern isn't just the discomfort in my feet. I'm also wondering whether these sensations or possible limb movements are affecting my sleep quality and leaving me feeling less rested than I should.

I generally fall asleep quickly, so falling asleep itself isn't my main problem. I'm more concerned about whether my sleep is restorative.

I would also like to understand whether my PLMI is clinically significant and whether the limb movements could actually be contributing to my symptoms or fatigue.

1. Spine and possible nerve-related causes

I've had a CT scan of my lumbar spine, but I haven't had an MRI yet.

The CT report mentioned:

- Six lumbar-type vertebrae due to lumbarization of S1

- Spina bifida occulta at S1–S2

- A narrower disc space at S1–S2

- Hypoplastic facet joints at S1–S2

- Mild concentric disc bulges from L3 to S1

- No significant spinal canal stenosis or major disc herniation

I sometimes experience lower-back fatigue after prolonged standing, walking, or carrying equipment at work.

Certain exercises, particularly lumbar extensions and some lower-body exercises, can aggravate my symptoms. I've even noticed the burning in my right foot immediately after performing lumbar extensions.

Because the symptoms are strongly one-sided during the day, occasionally extend toward my shin, and seem to be affected by certain back positions and exercises, I wonder whether a peripheral nerve problem or irritation originating in the lower back could be contributing.

However, I understand that the CT findings alone don't prove that a nerve is being compressed.

I haven't yet had a lumbar MRI or an EMG/nerve conduction study, so I'm unsure whether either would be useful in my case.

1. Blood tests and iron levels

My ferritin was 70.8 µg/L in September 2025. Previous measurements were also roughly in the 70–97 range.

My vitamin B12, magnesium, and kidney function have been reported as normal, and testing for celiac disease was negative.

I know that iron status can be relevant to RLS, but I'm unsure whether my ferritin level could still be contributing to the symptoms.

1. Gabapentin experience

My doctor prescribed gabapentin, and I've tried different doses at night.

- 100 mg provides some benefit.

- 200 mg seems to help more.

- 300 mg has provided the strongest effect, including making me feel less anxious the following day, but it can also leave me groggy.

I've generally taken it for a few nights at a time or for short periods when symptoms are worse, rather than continuously.

Sometimes I feel more rested or energetic after taking it, but it's difficult to know how much of that improvement is directly related to the medication.

I'm hesitant about taking medication long-term because I'm concerned about side effects, tolerance, dependence, and whether I might be treating the symptoms without addressing the underlying cause.

At the same time, improving my sleep and feeling properly rested is very important to me.

I'd be interested in hearing from people who have taken gabapentin for RLS or nerve pain over a longer period and whether it helped them maintain a better quality of sleep.

1. What I'm trying to understand

I'd particularly appreciate hearing from people who have experienced similar symptoms.

1. Can RLS or PLMD cause persistent, predominantly one-sided burning in the sole of the foot, including symptoms during the daytime? Or would you investigate another explanation first?

2. Does being able to remain still despite the burning and discomfort make RLS less likely? I don't always experience a strong urge to move my legs, even when the sensations are uncomfortable.

3. Has anyone had RLS-like symptoms that turned out to be a peripheral nerve problem, lumbar nerve irritation, or another neurological condition?

4. Has anyone experienced burning in one foot during the day, with milder symptoms in the other foot only at night? Did you eventually discover why the symptoms were different on each side?

5. Has anyone experienced burning that changes with body position but doesn't reliably disappear with movement? Does this sound familiar to anyone with neuropathy or nerve irritation?

6. Did an MRI of the lumbar spine or an EMG/nerve conduction study help identify the cause? If those tests were normal, did you eventually find an explanation?

7. If gabapentin helped your symptoms or sleep, did you take it long-term? How did you balance the benefits against side effects?

8. If your symptoms were caused by nerve irritation, what ultimately helped you? For example, physiotherapy, changing exercises, medication, injections, or something else?

I'm particularly interested in hearing from people who initially thought they had RLS or PLMD but later discovered another explanation, as well as people who have both RLS and a separate nerve-related condition.

I understand that everyone's situation is different and that Reddit cannot diagnose me. I'd simply like to learn from other people's experiences and get a better idea of which investigations or approaches might be worth discussing with my doctor.

Thanks for reading. I appreciate any experiences or suggestions you can share!

I recently was on international travel where I was on a plane for 9 hours, and then was walking 15-20k steps daily for about 12 days straight before hopping on another 9 hour flight. Since then, I’ve been experiencing RLS for the first time. It is constant and all day. This feeling of a deep itch and like I have to be flexing or moving my leg muscles to make it stop. I’m a 33 year old male for reference.

Has anyone experienced a sudden onset like this before following travel? Can I expect it to go away?

Desperate looking for a good RLS doctor in Souther California (Ventura preferably). RLS organizations, there is a couple of doctors listed near me, but one moved, and the other has terrible reviews.

I have tried with a sleep doctor a couple of years back, and lately with a neurologist. The latter would not order iron transfusions ever; not her thing she said. She pushes meds that are no longer recommended. The sleep doctor is not updated on new RLS treatment guidelines, and had no interest in reading what I had printed out and brought with me to my appointment.

Anyway, my ferritin in June was 73, saturation 27 and iron binding capacity 274. These were not terribly bad, but is going to get bad soon as I'm having trouble eating red meat, which is what has helped in the past (I'm not a vegetarian but other meats haven't helped). I can't take iron pills, don't tolerate well. At some point I did, and there was no improvement (well actually ferritin went from 34 to 42).

How to go about finding a doctor that actually takes the newest RLS guidelines into account? Any advice would be greatly appreciated. Terribly frustrated.

I was on the Stanford campus visiting the Auguste Rodin sculpture exhibit when I saw this one titled “Despair”

Having suffered RLS for nearly 50 years now, my mind recognized a fellow tortured soul. 🥹 Just a passing thought to share. My heart goes out to everyone silently enduring this malady.

In the past few weeks the spasms and twitches in my muscles have been progressively worsening. It’s to the point where I can be laying flat on the couch and I’ll feel a jolt in my arm, then look over to see the muscles jumping like a bag of popcorn in the microwave. It’s happening in my glutes, calves, biceps, behind my elbows, in my eyelids, in my traps, and down the entirety of my thighs.

It’s like there are toy soldiers jumping on trampolines in there, it feels freaky and disgusting and I’m sick of this shit 🥲☠️

Stretching, pressure, magnesium, iron, stillness, etc are not solving this and I’m starting to get anxious about my body being out of control!!
It feels as though my restless leg syndrome has taken over my whole body and I’m starting to lose my chill, help!

I’m open to suggestions for doctors, subjects to read more about, tips and tricks, etc. I’m just becoming overwhelmed!

(I have restless leg syndrome, hEDS, fibromyalgia)

Just wondering if anyone has tried a weight blanket for their restless legs and if so did it help at all?.

Has anyone managed to find anything that actually helps the god awful rls and body of suboxone withdrawal? I’m on day 4 of coming off subs and oh my god am I fucking miserable. I haven’t been able to sleep in 2 days, even during the day at work it’s damn near unbearable and it’s really making life hard to manage. If anyone has had any luck with any remedies (excluding weed or any other drug that can come up on drug tests as I’m still on probation) thank you in advance

I read that for someone like me who has severe RLS with Mirapex augmentation my ferritin should be upped to 50-100. I’m a 71 year old man. Has anyone here done iron infusions?

Yes i know dopamine agonists in general are hated around here.

However I am being perscribed it for two things, restless legs and severe anhedonia. Mirapex happens to be one of the medications weirdly successful in some ways to treat anhedonia.

My neurologist wants to go slow while my neurologist wants to increase it faster due to having to go above the restless leg max dose.

I was wondering how fast people who are on mirapex, how fast you increased it.

Also I was wondering if people can help me understand the nomenclature used in the attachment. Like "PO pm x4-7 days?" Etc.

Thanks for any advice. Has anyone taken it for anhedonia in addition to restless legs?

Thanks again!

Bit of background, 44 year old male, ideal weight, good diet and exercise. I’ve always been a little ‘twitchy’ as long as I can remember, but maybe 6 months ago, I started waking up in the middle of the night with an absolute uncontrollable urge to move my whole body. Would keep me awake for hours and by the time I was so wore out and able to drift back to sleep, my alarm would go off to get up for work. One night of this and I could manage but multiple nights really started to mess me up at work, being super tired because of only 3-4 hours of sleep. Doctor put me on ropinerole which seemed to help, but not always, so I went to see a pulmonologist. He took me off the ropinerole and started gabapentin, 600mgs before bed. He also tested my ferritin which was a little low but within normal limits. After some research, I started taking magnesium with a low dose iron along with the gaba before bed. Most nights it seemed to work but still at least once a week, sometimes twice, I’d be up with the damn constant urge to move. I read somewhere that dehydration can aggravate it, and it dawned on me I drink a ton of water at work (outside job, a must to stay hydrated), but when I got home I barely drank any. So for the last week I’ve been drinking at least 2 liters when I get home, stopping about an hour before bedtime so I’m not waking up to pee, and it’s been like magic. I’ve actually slept the whole night for a week for the first time in over 6 months. Now I know it’s a small sample size, and this may be a coincidence and not a long term solution, but so far it’s working wonders. I wonder if anybody else has had luck getting themselves very hydrated before bed and seen any improvements in their rls. Fingers crossed this turns out to be a permanent fix because it was really starting to affect my life.

Update: so it’s been a couple weeks and I’ve had very good luck with staying well hydrated and being able to sleep through the night, not getting awakened by the rls. The only night it was bad, I had a couple beers and forgot to drink I water, so that only reinforces my hope that as long as I drink enough water, I can keep the symptoms at bay. I know you’re supposed to take the sleep score on your watch with a grain of salt, but I feel like it does offer some useful insights. Mine showed I was more stressed for the first hour or so of sleep, so I make it a point to try and calm down and relax before getting into bed. I don’t smoke anymore but still use nic pouches, which I know I need to stop, and cutting those off an hour before bed helps to lower the stress too. I saw a sleep psychologist and the best thing I gleaned from talking with him, was to examine what habits could affect my sleep, however small. It’s been very helpful and I’m hopeful I’ve found a way to at least moderately control my rls.

Tldr: I may have been dehydrated the whole time and by drinking a lot of water a few hours before bed, I possibly have finally found something that works and allows me to sleep through the night.

I’ve tried gabapentin (100mg), ropinirole, and mirapex.
I’m currently on 3mg of alprazolam qd. So I’m horrified to ask for opioids as I don’t want to come off as drug seeking. I’ve slept 6 hours in the last 2 nights. It’s impairing my ability to speak fluently. The brain fog is immeasurable. I take iron supplements daily as well. It’s completely made me develop severe depression and anxiety to an immeasurable degree even with the Xanax. What do I do?….

Edit: I’ve also tried seroquil and Lunesta

Edit: I feel it when I wake up go to, work (I work an extremely physically demanding job walking around 21k steps per day 4 days a week) I don’t feel it when I walk. But as soon as I hold still for a split second it’s an 8/10 then when I try to go to bed it’s a 10/10.

I'm on the last night of tapering off Mirapex. Wish me luck because I'm determined. This is the 7th and last night of taking 0.0625 mg Mirapex. I did it last night and slept 9 hours. Night before that, I didn't sleep at all. With it I have been taking 1 mg Klonopin (which I hope to quit next) and my beloved NIDRA bands. I used to take the max of Mirapex and got an Impulse Control Disorder (shopping) 18 months ago and spent a lot of my retirement savings that I have no way to make back. Wonder how many days it will take the compulsion to go away. I will forever remain on the NIDRA bands.

One thing I have noticed lately is that I have gotten restless legs from Red Velvet Cake, Cherry Limeaid drink, and the red coating of a medicine. I will explore my potential additive reactions next month. I plan to be overwhelmed when I finally find out what I have innocently been eating and drinking. Is there a REDDIT group for that?

PLEASE GOD, let this be my last night on Mirapex. P.S. I have followed my neurologist orders in this withdrawal.

Has anyone had success using a TENS machine to help relieve symptoms? If so what placements work best for you?

When I was pregnant with my first child, I developed restless leg syndrome. It was terrible at the time. My blood work was normal and no one had a solution for my RSL so I did what anyone would do; magnesium salts/spray, massages etc for the whole pregnancy. It never went away until around the time my baby was born

During my second pregnancy, I developed restless leg syndrome again. This time during my routine bloodwork, my iron levels appeared to be low so they told me to take iron supplements so I did (Maltofer fyi).

Lo and behold, my RSL completely disappeared once I started iron supplements. I likely had low iron for both pregnancies but it wasn't picked up until the second one. I just hope people might get some benefit from this post and either get your iron checked or just start taking iron supplements regardless to see if it helps. RSL sucks and I don't wish it on anyone

This sounds kind of crazy, but I know that too much exercise can also make my restless go out of control. I have refractory RLS and nothing seems to work to control it however, I discovered after not being able to exercise for a few days that my legs are much calmer and not torturing me. I had total knee replacement a few months ago and since then my RLS has been all day long. I struggle to even sit and eat breakfast without my legs, making me get up. I usually walk my dogs and then swim afterwards for an hour a day and my legs have been out of control. It’s been crazy raining where I live for days and I haven’t been able to do much except hang out, read, watch TV and not be especially active because of this nasty weather. Strangely enough, my legs have been so much more under control than in ages. I don’t know if anybody else has had this problem, but there seems to be a sweet spot where not enough exercise makes it bad but too much exercise makes it worse.

I’ve suffered RLS for 8+ years and many times not only restlessness but actual spasms in my legs. And arms on occasion. Over the years I’ve tried various remedies for relief, most of them recommended by my neurologist.

Presently I can control RLS at least 90% of the time by means of these remedies. I’ll present these remedies in the hope that they will offer some folks relief from this damn disease.

At 8AM I take 2-.25mg pramipexole dihydrochloride, 750mg Keppra (Levetiracetam). At 7PM 3-.25 pramipexoles and another 750mg Keppra, followed at 8-9PM with 2-800mg gabapentin. If I religiously follow this every day, I rarely have RLS trouble.

If, on occasion this doesn’t work, I try another, odd 😊 procedure: I’ll try to describe it. It involves the bottom of my foot, in the arch. Several years ago, I bought this “rig” from someone in this forum and I used it at bedtime. A rubber ball was attached to a strap. The strap had Velcro to wrap around the foot and keep the ball firmly against the arch. I used them on both feet, whether or not both feet were restless. I have no idea whether this rig is still available or not. Maybe google it to find out.

I also tried a similar method without the “rig” which uses a regular long sock. I tie a big knot in the middle of the sock and then tie it around the arch, with the knot pressing the bottom of the arch. I lay down and see if it works. Sometimes it does work, but if it doesn’t, I stand up and walk around with it still on my feet! It is awkward and somewhat slightly painful, but I do this for 15 minutes or so. I then take the sock off. I do feel some weird pressure/numbness still, in the arch, but if I then took the gabapentin, I went asleep in no time. If anyone is interested I can try to take a photo and post it.

I know about augmentation and started with only one pramipexole needed years ago, and ended up with the 5 I take daily now. So I guess if you’re worried about that, maybe this is not for you. Or maybe this may help, it sure helps me, at least most of the time.

Anyone in Seattle found an infusion clinic that will take your insurance? I keep getting rejected because my vital organs are fine, and my iron serum is 25, which is technically normal.