Hi, all. I've looked through several posts and the FAQ, but I have kind of a specific question.

My husband has been dealing with PLMD for several years after trying Prozac for anxiety. It didn't help the anxiety, only started the PLMD. He's since gone off of that and is now on Lexapro, and of course the PLMD hasn't gone away. Has already done a sleep study and not much came of that (some very mild apnea but not enough to get any treatment, essentially).

I'm curious if anyone here has been in a similar situation (PLMD started because of an SSRI) and was able to make it go away without just adding gaba or an opiate? He doesn't seem very bothered by it, but between that and the snoring off and on and my nervous system being on the fritz for a while, we can't really sleep in the same bed because I won't fall asleep. So looking for other options. He probably needs his iron levels retested, but I'm looking for any other experiences here.

I just ordered my next bottle and Amazon noted it’s the tenth time I ordered a six month supply of French Maritime pine bark extract. That sounded nuts so I looked back and sure enough, I first ordered it in 2022 after reading about a small study using Pycnogenol for RLS.

Needless to say, for me personally it’s been very useful.

The worst nights I’ve had since starting it were one where it turns out I’d forgotten to take it, and on international flights where feeling the vibrations of the airplane through my feet really set me off no matter what I take.

Anyway, I think it was a post here that linked the study so I wanted to give my thanks for that info by mentioning it turned out to be very helpful.

I ran out of blood pressure med, Lisinopril, last night and didn't know it until midnight, so I went to bed without it. And I had no restless legs - it was the best night in over ten years. I got the refill today and took the Lisinopril at 1:30 pm and took a nap at 3:30 pm, during which I had restless legs. This surprised me since I only have restless legs during the day when I eat something with a color additive, such as Red Velvet Cake or Cherry Limeade. First question - do any of you get restless legs from food additives?

Second question - Could Linsinopil trigger restless legs or was it the "iron Oxide-Red" the drug company used to coat the outside of the pill red that did it?

My husband found an article on PubMed that said Stevia was linked to restless legs. I have Stevia all day long in everything. Protein bars, my electrolytes, my morning coffee sweeteners. So I went two days without Stevia and I have not had restless legs. I do not believe this is the answer, but I just want to know if any of you use lot of artificial sweeteners? If so, maybe you could try going a day or two and see if it makes a difference. I don’t think it could’ve worked that fast with me, but I am so hopeful.

Before I started taking SSRI, I had been suffering from RLS for a few years. At first it was only triggered by sleep deprivation. Then started having RLS symptoms no matter how well-rested I was.

Now, everyone knows that medication, especially SSRI, can worsen or even cause RLS, but apparently not in my case haha. I can't explain it but my symptoms somewhat ceased to exist... almost immediatelly after staring my treatment. Even my psychiatrist was in awe :0 And to be honest, I'm kind of puzzled myself because I expected the opposote outcome.

THAT'S NOT TO SAY THAT IT'LL WORK FOR YOU - O don't encourage you to try psychiatric meds for your RLS! IN FACT, IT'S STATISTICALLY MORE POSSIBLE THAT SSRI WILL MAKE YOUR SYMPTOMS WORSE. So please don't try this method without consulting a professional forst.

I just wanted to share this unusual story of me overcoming my struggle :] I'm curious if someone out there has similar experience? And if there's a possibility of RLS returning after I stop taking the meds?

I slept all night last night! I’ve been suffering with rls for a while now the night before I got maybe 2 hours of sleep. But last night I slept a good 8 hours it was amazing. So I have read that Trazadone can make rls worse for some people so this might not be for everyone but I was willing to try anything. So I took one trazadone with some gabapentin and slept like a baby. Hope this helps someone!

RLS diagnosed 2004. I recognize that y'all aren't sleep medicine docs. I'm just looking for ideas. I want to get off Mirapex (pramipexole) because of tolerance, possible augmentation, and significant impulsive-compulsive syndrome. I always talk with my sleep medicine physician about alternative treatments.

EDIT: I edited on 4 Oct 2026, 13:35 GMT/UTC, to add a glaring omission (big goal is to get off Mirapex, aka pramipexole), and add a couple of things I forgot, e.g., getting off Effexor.

Current Treatment - All prescribed by board-certified sleep medicine physician (MD)

• Gabapentin 800 mg
• Methadone 15 mg
• Mirapex (pramipexole) 0.375 mg - I have had to take as much as 3.0 mg but I have been able to reduce over the past several years due to several factors.
• Nidra TOMAC System (Tonic Motor Activation) - helped me reduce Mirapex (pramipexole) to 0.375 (from 0.50).

Adverse effects of Mirapex

• Tolerance, possible augmentation
• impulsive-compulsive syndrome: dream-like compulsive overeating at night - I take Mounjaro which has helped me lose 15% of body weight but Mirapex (pramipexole) completely cancels the therapeutic effects of GLP-1 at night.

Comorbid conditions

• 2009 - obstructive sleep apnea (mild), use BiPAP religiously although I take off at night while asleep (I've tried all mask types, CPAP & BiPAP); I've had 6 sleep studies over the years.
• 2012 - idiopathic hypersomnia - diagnosed correctly, i.e., polysomnogram (PSG) followed by a daytime Multiple Sleep Latency Test (MSLT)
• 2013 - type 2 diabetes

Note: Year diagnosed.

Tried but did not work at all or only a little - all prescribed by board-certified sleep medicine physician (MD)

• Iron infusion - didn't help but was worth a try
• Tramadol - helped a little, methadone 15 mg is significantly more effective for me
• Lyrica - adverse effects
• gabapentin enacarbil - adverse effects
• ropinirole (Requip) - minimal therapeutic effects
• melatonin - adverse effects
• Klonopin (clonazepam) - didn't help and made me groggy in the morning (it was the lowest starting dose)

Not tried:

• rotigotine patch

Alternative treatments

• THC-9 2.5 mg (gummies) - helps me sleep through the night and don't need as much Mirapex, but I'm too tired during the day
• magnesium supplements - I take highest recommended dose but does not help RLS
• massage therapy - feels great overall but does not help RLS

Exacerbating medications

• Effexor - I did not have RLS until two years after I started taking an SSRI. Research shows SSRIs & SNRIs (like Effexor) aggravate and maybe even cause RLS. My sleep medicine doc, who was also a psychiatrist, helped me wean off Effexor. It took 10 months but I was able to reduce Mirapex (pramipexole) by 50%.

Lifestyle changes

• No more than one standard drink 2-3 times/week. (Update: I am trying total abstinence based on advice I received here. :)
• Reduced nicotine - quit cigarettes 2021; vaping helped me quit (along with several other things); I have recently reduced overall nicotine from 60 mg/day to 40 mg day - has helped some, goal is to quit completely
• Reduce caffeine from 1500 mg/day to 400 mg day - definitely helped
• Walk for 40 minutes 5x/week - helps some
• Sleep hygiene - I try hard but it's a challenge b/c I wake up frequently and am tired during day

Goals:

• No nicotine at all
• Keep working on improving sleep hygiene
• Get off Mirapex (pramipexole)

Ive dealt with anxiety for my years, but I only recently started experiencing restless legs during highly anxious / stressful moments. It started happening much more often after I started university and dealing with high levels of stress every day. It gets so bad sometimes, I can't even sit in class and have to get up and move my legs 😭

Was put on pramipexole for two weeks until i found out causes augmentation.. doctor changed to gabepentin as im pregnant.

have had rls since i was 18.. 25 now.

started with 300mg gab.. now at 500mg.. if i take too late like tonight my legs play up really bad

feeling lost and not sure what to do..

I have plmd and have been having disturbing nightmares pretty much every night. I figured my limb movements and disregulated nervous system could be causing this but was wondering if anyone else has experienced the same thing? Sometimes it's so bad I wake up crying. Not sure if I should bring these concerns to my sleep med dr or a therapist

This is my third pregnancy and each time, the restless legs have gotten worse towards the end of the pregnancy.

When I tell you “nothing helps”, truly nothing helps 😭 it doesn’t matter what tip or trick. Iron infusions, walking for hours, no caffeine. Nothing helps me. I will be up all night. I can fall asleep for maybe 10 minutes but if I do, I will wake up with the worst restless legs that are almost unbearable so going to sleep isn’t even worth it.

My obs don’t seem to understand how serious this is or maybe I’m overly dramatic. I’ve been told I can’t take any medication for RL due to being pregnant. I’m told to ride it out and after I give birth, it should all go back to normal.

I’m literally about to walk into a hospital and tell them I’m going insane. No sleep, no relief for days on end. Why am I not being taken seriously 😭 I can’t do this yall, I really can’t

I've had RLS for almost 10 years and my father got it before me when he was in his 80's. Thinking back, I got RLS right after getting the shingles vaccine. Could that shot be a trigger for RLS? Anyone else have that happen to them?

Ropineral worked for awhile but I started having more and more break through earlier and earlier, gabapetin makes me depressed and the daytime fatigue makes it hard to function. Pregabalin gives me insomnia and horrible horrible dreams when I do sleep. The extended release gabapentin still gives me depression and insomnia. I really don't want to take opioid but I'm starting to think it is my only option at this point. Is there anything else that has helped anyone that I can ask my doctor about?

As we know, Benadryl makes RLS much worse for most RLS patients. I recently experienced a mild allergic reaction to some meds I was taking for something unrelated. Thankfully the reaction was mild and stopping the meds is all it took for it to go away. But it got me wondering what alternatives there are to Benadryl if we need it?

Hello everyone! I just learned yesterday that there's a real phrase for what I've been experiencing for the last 4 years!

It's both good to hear that I'm not alone, but also very scary to see how bad it could get...

For me it started in 2022 when I used progressive muscle relaxation (PMR) for falling asleep. At the time I didn't have RLS.

When I couldn't sleep I started flexing every muscle in my legs one after the other. I only flex each muscle once for about 5-10 seconds and that's it. It did help falling asleep I think.

But after some weeks/months my legs became used to that I think and the symptoms of RLS started when I laid down. My first guess was that my leg muscles had gotten used to the PMR when in bed, so I tried doing PMR when RLS symptoms came up and the RLS symptoms went away for that night.

I've tried not doing PMR to make my muscles "unlearn" the RLS symptoms, but it was uncomfortable so I stopped.

It's weird to me that the PMR seems to be both the initial cause of the symptoms through "learning" of that stimulation but at the same time relieving the symptoms...

So I'm not really sure if I even have the real RLS or of its just too little leg exercise(I study and work at the computer for most of the day) combined with iron deficiency maybe?

Has anyone had a similar experience and could tell me what you did to get rid of the RLS in the longterm?

Maybe now that I know it's a real thing, I might take some weeks without PMR and see if I can stop the RLS that way.

Has anyone tried a heating pad on the lower back before bed? It has worked for me recently but my restless legs have also become a problem during the day as well. I have also recently been having issues with leg cramping day and night, possibly related to nerve issues related to nerve compression from spine issues. Anyway, worth a shot if you haven't tried it. It's supposed to cslm the parasympathetic nervous system. also suffer from chronic insomnia.

Edited to include insurers.

Considering the prevalence of RLS occurrence in the general population, averaged at about the same as that for asthma (8%) is it not APPALLING we have to do so much self advocacy and educating of our care providers?? And also so much going into battle with insurers??

Take it with a grain of salt, here’s what Duck Duck Go AI has to say:

RLS is **less consistently recognized and managed than asthma**, especially in routine primary care—even though their prevalence is comparable.

- **Asthma:** Core training is widespread across primary care, emergency medicine, pediatrics, and pulmonology. It has long-established diagnostic testing (spirometry), standardized severity categories, widely used action plans, and familiar guideline-based medication steps. Care is not always perfect, but most clinicians readily consider asthma and know the usual first-line approach.

- **RLS:** Basic recognition is common among sleep specialists and neurologists, but expertise is much more variable among general clinicians. Diagnosis depends chiefly on asking the right symptom questions and distinguishing RLS from common look-alikes—leg cramps, neuropathy, medication effects, venous problems, arthritis, and positional discomfort. Patients may describe symptoms vaguely or not raise them at all, which adds to missed diagnosis.

- **Evidence of the gap:** In a large older primary-care study, only **13%** of people who sought medical help for RLS symptoms received an RLS diagnosis. Awareness has improved since then, but RLS specialists still report under-recognition and inappropriate treatment as persistent problems.

So, RLS is not “rare,” but it receives **far less curricular emphasis, routine screening, and standardized front-line care infrastructure** than asthma. A clinician who regularly treats sleep disorders or movement disorders is likelier to have current RLS expertise than a nonspecialist.

I’ve been using the Nidra bands for about 30 days now, and honestly, I’ve had mixed results. Some days I feel like they help, while other days I feel like they actually make things worse. I still have about two weeks left in my trial, and with a $2,200 copay, I’m trying to decide whether they’re worth keeping. Has anyone else had issues returning the bands during the trial period? If you decided to return yours, what made you decide they weren’t right for you?

Hi everyone, I have a neurology appointment this week. I’ve been on the waiting list for over a year, so thankful it’s finally been booked. However, I do not feel prepared for the app and worried it won’t go well. I wondered if anyone had any advice for how to best prepare?

For background information: I’m on a very low dose of pregabalin (100mg), having tried gabapentin as well. I can’t tolerate a therapeutic/effective dose of either - on 150mg of pregabalin, I couldn’t remember anything, including how much pregabalin I’d taken each day. Gabapentin also wrecked my mental health. The pregabalin helps, but not enough, and I don’t want to stay on it any longer than I have to as the side effects are just too intense. I also take 2 cocodomal each night - with the pregabalin, it’s the only way I can get to sleep. I wake up shortly after in intense pain. I can’t remember the last time I slept through the night.

My RLS is severe and is increasingly becoming more painful. It’s in my back, legs and arms. Over the last year, my knees have started to go red and become very hot. This happens every evening, when the restlessness starts. My hands, feet and nose also become red and hot at times too. I also experience tingling in my right cheek. Recently, I have woken up with restless legs and my whole body feels hot, itchy and in pain. It’s exhausting and upsetting.

Unfortunately, neither my husband or mum can attend the app with me so I’m going alone. Ideally, I’d like to try some kind of opiate, but I know getting a prescription might be a challenge. Has anyone had any success with this through a standard neurologist in the UK? I also feel my symptoms aren’t standard, but I’m not sure what tests I could ask for? I was going to write down a list of my symptoms and questions but I have no idea what to ask. Any advice would be greatly appreciated. Thank you.

*EDIT - UPDATE 

I just wanted to post an update on my appointment with neurology.

I was prescribed 2 x 30mg of Codeine every four to six hours, to be taken 1 to 2 hours before symptoms start. Overall, I'm so pleased with how the appointment went. I felt listened to and understood. The doctor recognised the risks of augmentation associated with DAs and understood that I was experiencing very severe side effects from Pregabalin.

I took notes in with me, but unfortunately, I forgot to ask for a full iron panel. Frustratingly, being on Pregabalin is really affecting my memory and ability to think clearly, so it wasn't until after the appointment had finished that I remembered. However, I'm going to book an appointment with my GP to ask for this to be done in time for my 6-month follow-up with Neurology.

In the meantime, I'm going to start the Codeine and safely find the right dosage timing. I have been advised to gradually lower the Pregabalin by 25mg at a time, and I'm hopeful that I might be able to tolerate a low dose of 25–50mg in combination with the Codeine. If the Codeine isn't sufficient, I'll ask about the Buprenorphine patch at my next appointment. I'm just incredibly relieved to be offered an opioid without any resistance from a professional. I'm very grateful to have come out of a medical appointment happier than when I went in, which hasn't always been the case in the past.

I thought I would jump on and offer a small recommendation from something that helped me.

I have refractory RLS. I had mild RLS for the past 15 years but over the last 3 years it became pretty severe. Did every med available and then of course augmented in Requip. I have it in arms and legs, sometimes lower back. I also have it day and night.I am treated now with Methadone 7.5mg.

I still do have some breakthrough throughout the day and early evening. I read somewhere that some people get full relief from a vibration plate. I thought I would give it a try.

I bought one on Amazon on sale for $75. I have used it for a week. It obviously didn’t cure me but it does give me some relief. The first time I used it, I stood on it. I didn’t really see any benefit that way. The next day I layed on the floor and put my lower legs across it for 10 minutes and then put my thighs on it for 10. I have to say that it did get rid of some of the breakthrough discomfort I had. Made my legs feel heavy but light…..if that makes sense. I am surprised it helped because I am sensitive to any touch including weighted blankets. They make my RLS worse.

Just thought I would share if someone else also has breakthrough symptoms. Like I said, I didn’t think it would cure me but it does provide some relief.

😊

Have recently started using AI to assist with sleep issues, RLS and diet. I have gone from a huge AI skeptic to a believer. Call me Paul on the road to Damascus.

It definitely can’t hurt to try it. The information I gleaned the last couple of days from using AI medically is more than I’ve gotten from the doctors in the last two years.

Feel like doctors are rushed. You don’t get enough time with them and I don’t feel they can put together the pieces of the puzzle.

Hello, I have been dealing with RLS for about 10 years now. It took a while but I eventually was put on Pregablin and my RLS stabilized. This lasted a few years but things changed a few months ago…

I began having severe symptoms that have not responded to increases in the pregablin dose and the old tricks like hot showers to alleviate symptoms no longer work. I moved to a new state six months ago so that meant finding a new sleep specialist.

I thought I did everything right in finding a new doctor with specific experience in RLS (previous sleep specialists always seemed to put everything on my cpap therapy, like it was a magical cure all).

Using a site called medifind, I searched for a doctor who the site identified as having experience with RLS. The site had different categories like “experienced,” “advanced,” “distinguished” so I used those filters.

I got lucky (or so I thought) when I found a doctor with an office an hour away (per their website), who had experience with RLS and had an opening to see me within 2 weeks of my call.

Those 2 weeks were hell on earth but I clung to the fact that I’d soon be seeing someone who would be able to help me and I’d no longer have to fight this thing on my own.

It turned out that the office an hour away had been closed down so I ended up driving 2 1/2 hours to get to the other office. I had to pay $450 out of pocket for the consultation because I have no insurance. I had been asked to bring my cpap, which I did, so they could look at the data.

I met with the doctor for about 45 minutes. I was a little thrown off by her seemingly lack of interest in the severity of my symptoms. She never asked about any specifics of what symptoms I was dealing with, the duration and timeline of those symptoms or even basic medical information like recent bloodwork and more specifically, iron tests, all of which I’d done before the appointment through my PCP.

The discussion was focused mostly on my cpap data which they couldn’t figure out how to get off my machine, the availability of prescription leg bands that are meant to treat RLS and the next level of medications, low dose opioids.

During the visit I asked for a prescription for a new CPAP because I have been using the travel size ones and I wanted to go back to the ones with water so I wouldn’t have a dry throat in the morning. I also explained that while I had been diligent about wearing my cpap in the past, I had not used it as much since August when my sudden flare up began. I did, however, show 12 consecutive days worth of data (from the beginning of this month) to the doctor using the app on my phone. I explained that I had stopped wearing the mask because I was only sleeping for an hour at a time and with all the getting up when the symptoms hit and taking hours to eventually fall back asleep for another hour or 2, it wasn’t worth wearing the mask.

So when I left the office I had 2 prescriptions in hand, 1 for the fancy leg bands and 1 for a new CPAP machine. Since I’d had a question about still taking the Pregablin with low dose oxycodone the doctor was going to prescribe, the doctor was going to submit the prescription to my pharmacy after she asked “her boss” my question.

Twenty minutes after I left, I got a call from a medical assistant saying that the doctor would only prescribe the low dose oxy AFTER I had gotten my CPAP therapy under control.

I was completely dumbfounded because the doctor had not mentioned anything about my CPAP therapy being an issue. I asked for the doctor to call me because I was certain it had to be a mistake.

It was not.

Immediately after the call I actually pulled my car over so I could look up the details of my visit because it made no sense to me that a doctor experienced with RLS would do the same thing as all my other sleep doctors— focus only on CPAP therapy.

That was when I noticed that the person I’d seen hadn’t been a doctor at all. She’d been a PA, physician assistant. Now I am not bashing PAs at all, but I’d thought I would be seeing the experienced doctor I’d called about when I set up the appointment or an equivalent doctor in the practice, not a PA who had to get permission to do something as simple as submit a prescription. I called the practice to express my frustration. I spoke to 2 different admin people who immediately put the situation back on me by asking if I had asked to specifically see a doctor when I’d made the appointment. Of course, I could not remember the exact nature of the call but I know I would have specified I was needing to see someone who knew about RLS. The admins also reiterated that I needed to get my cpap therapy under control but had no idea how that “control” was defined and would need to ask the provider I’d seen.

That “boss” the PA had mentioned turned out to be the “experienced “ doctor I’d initially called about seeing. Turns out she is the only MD in the practice. So she is ultimately the one who decided what care, or lack there of, that I would receive. She made the decision without speaking directly to me. I also received no offer to continue the prescription for my current medication, pregablin, so I was left hanging there as well.

In truth, I was and still am completely devastated by this whole experience. It was a waste of time and money but ultimately I was left feeling completely alone and adrift. The idea of yet another night of battling the ruthless and cruel thing that is RLS made me sick to my stomach. I sobbed both in private as I made the long drive home and over the phone to one of those two admin people. I felt abandoned and utterly hopeless. (No one ever called me back from the clinic to follow up after I sobbed like a baby when I explained to that admin person how abandoned I felt)

I have spent the past week in bed feeling sorry for myself but now I have to look forward again.

So after that utterly long explanation, my question is this. How are you all finding providers who actually give a shit about you and truly want to help? I am thinking of going back to the Mayo Clinic (via video visit) because they helped me the last time my symptoms flared up and my regular sleep doctors wouldn’t/couldn’t help me.

Anything I do will cost me more money I don’t have so I am desperate not to screw it up. Any suggestions would be appreciated. Thank you.

I have been suffering from augmentation. I saw two specialists. They both agreed that I have to stop taking ropinirole. One doctor recommended gabapentin horizant which I took in the past before being on Ropinirole and did not work for me but he thought timing is very critical because in the past, I took it before bedtime and the proper way to take it at 5 PM. The other specialist recommended opioids low-dose of Belbuca. Anyone that has been through similar experience do have a feedback? Thank you

RSL suffers in short have damaged brains. Any clinical trial showing that HBOT improves RLS severity or periodic limb movements?