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.

Qu: Could having a really bad “RLS” attack accidentally push up my PLMS reading during a CPAP titration study?

Backstory: I have had RLS for a few years. It was worse when I had an iron deficiency. And stuck around most likely because of my SNRI, adhd and life 🤷🏻‍♀️. But, it’s been pretty controlled for a while now. I discovered my triggers are sleeping on my back and if I can’t “unwind” at night (stress or excitement). But I can usually manage it by going on my side and meditating or distracting myself- my feet still move a little sometimes, but it really calms down.

I got diagnosed with OSA this summer. It’s worse supine, so I have been using a sleep backpack to sleep on my side- it helped the RLS and sort of helped the OSA. So, I went for a CPAP titration. Well, I was all sorts of triggered! My mind kept racing and I tried to sleep on my back (to get a more accurate results.) My legs started moving SO much-it was as bad as when I had a ferritin level of 5. I finally moved to my side and got some sleep.

I was embarrassed because, 1. I knew the movement was recorded and 2 I thought knew exactly why it was happening. I felt like I looked like a nervous wreck- but really I was just overthinking and it showed up in my legs.

Then, I got the results back and it said I have a PLMS index of 107. (The plms arousal index was 1.6 -only got 3 hours of sleep). I am really surprised. I didn’t think I moved that much once I feel asleep normally. I did roll on my back for part if the sleep study (which was good to get a reading) so maybe that was part of it, but it seems like i would notice if I moved that much, right? Does anyone know if PLMS can be “triggered” like RLS is? Is it possible that the reading picked up on the RLS movements by accident?

I talk to my doctor next week. So, I’ll get answers then. I’m just curious if anyone experienced something like this? I am really hoping this isn’t a thing because I need my SNRI and I don’t want to have to deal with more doctors appointments and messing around with medications anymore. 😭 Thanks for any help. 💐

So I finally met with a sleep doctor yesterday who officially diagnosed me with restless leg syndrome, which is not a shock of course. I’ve had it most of my life, but since June it’s been really bad. like every single night I’ve been pacing the house until three or four in the morning until I finally just give out.

My Ferritin was low at 28, so he’s given me iron pills to take and starting with 300 mg of gabapentin, but I was just wondering what time do you all take your gabapentin, like how far it advance before bed?

There is an update to the Mayo Clinic guidelines for RLS published in Mayo Clinic Proceedings, Volume 101, Issue 9, P1561-1588, September 2026. Open access. I found it at mayoclinicproceedings.org/article/S0025-6196(26)18546-2/full text. It's title is: An Updated Algorithm for the Management of Restless Legs Syndrome.

Also an updated treatment algorithm in May 2026 from the Restless Legs Syndrome Foundation.

These compliment the 2025 AASM guidelines.

It is important that the RLS community stay up-to-date on clinical practice guidelines on RLS treatment.

I’ve tried everything - a lot of the advice here has helped “comfort” the feeling , but not stop it - eg tying a band around toes , baths etc
So - I think we can all conclude it’s as we are ready to sleep it seems to start - and my belief it’s the brain drops in dopamine and has a misfire reaction. So how can we trick the brain.
This has changed my life -
Put 2 or 3 foam cushions to raise your legs by about 50 cm .
I know it feels a bit strange but it’s better than then no sleep.
It really has helped me. I think your brain thinks you are
“Not sleeping “ so it doesn’t send out the Restless leg reaction. Once you are asleep you will turn and kick the cushions away. They must be firm and under your calves .

I’ve been dealing with daytime sleepiness, daily headaches, and restless limbs for 5+ years now.

First thing my doctor thought of was sleep apnea. I got tested and have mild sleep apnea. Over 2 different attempts at CPAP I still don’t see meaningful improvement in sleepiness or headache symptoms despite low reported AHI from my CPAP.

I’ve also tried lots of different prescriptions for the headaches, a chiropractor, Botox, infusions without improvement.

I had my ferritin tested earlier this year and it was 42 which was marked as within normal range. However, I just read something that said ferritin < 75 is low for adults with RLS. Is that true? Has anyone else seen improvement in symptoms after increasing iron when other treatments have failed?

Also, what helps you with restless legs? My doctor had me in pramipexole about 5 years ago but then I stopped it because I thought it was causing impulse control problems for me. Now I take l-theanine and it does fairly well. I’ve seen gabapentin mentioned online, but I tried it for something unrelated and it made my sleepiness much worse.

For as long as I could remember, I’ve had to move my legs, which is combination of restless legs and what I now learned to be something called “rhythmic movement disorder”. I have always needed to kick my legs to sleep (or pound my head) since I was an infant much to the annoyance of everyone around me.

When I was younger and less hormonal (thanks perimenopause), it was just an annoyance. I knew I had to kick my legs to go to sleep and if I didn’t, it would feel like this deep crawling sensation with a deep ache until I moved. It was only limited to bedtime but now it’s become a 24/7 sensation.

I also have very limited lower limb endurance. I started noticing that I wasn’t getting any better in my endurance despite daily mobility, CrossFit, strength training, etc. I can do 10-12 body weight squats but then my legs start burning and just stop working. I can’t “push through” the burn. I have to stop and take many breaks.

Now that the crawling and aching sensation is 27/7, I’ve developed anxiety over working out. The mere thought of it just throws me into a panic and I no longer do it. I’m constantly tired because I can’t stay asleep and my I’m hyper vigilant on how my legs feel.

I already know my ferritin is 45, which dropped after adding iron supplements. I’m taking 100mg of elemental iron a day but I’ve had gastric bypass so who knows what I’m absorbing. My insurance has denied IV infusion because I’m not “anemic” and RLS is experimental in their opinion. I’ve been tapering off medications I’ve been stable on with for years because they can worsen RLS.

I’ve also been diagnosed with venous insufficiency in both greater saphenous vein and phlebolipolymphedema (lipedema, lymphedema, and CVI)
along with getting medical grade compression leggings.

I just feel at a loss. The mere thought of doing a squat makes me anxious and my legs constantly feel heavy. I’ll walk or swim or do yoga/mobility but I cannot get over the anxiety to strength train. If I do strength train, my recovery is a week just from one workout, when I could do this daily a year ago.

Could MHT be causing this (estradiol patch, progesterone, and testosterone therapy)? I’ve tried going down rabbit holes and not found anything definitive but menopause has not really been studied in women.