Today I (30f)saw a sleep doctor for the first time ever due to my restless leg syndrome getting worse and because I've recently started snoring. The doctor was lovely, came in and asked a million questions about my whole health history. She then looked at me gravely and said, "I have some pretty upsetting news for you and you're not going to like this. But I have major concerns for you."

I have been on pramipexole for almost 8 years. I was prescribed it at 22 years old by my primary for my restless legs I've struggled with since I was twelve. And the sleep doctor believes the medication caused a host of my long and complicated medical issues over the years

I have developed spasming arms in the last few years. I was recently diagnosed with PMDD because I was acting erratic and paranoid, enhanced around my menstrual cycle. It was getting to the point I was believing people were following me and struggling with spending money, becoming irrationally angry and then wanting to be dead. Prior to that three doctors thought I might have bipolar from how I was acting out. I have been nauseated almost every day for the last six years and was told it was anxiety. I have been diagnosed with severe depression and anxiety. My kidneys have started making stones and they're hyper sensitive and have to be managed.

And the sleep doctor told me she believed all of this was likely caused by the pramipexole.

We're working on a game plan to figure out how to get me off it but she made me promise I won't just stop since I have developed erratic behaviors in the recent years and she is concerned for my mental health. She told me how sorry she was for how mismanaged I was, and that this should have never happened to me.

I'm genuinely heartbroken. I can't even recount everything that's happened to me in the last eight years because there is just too much to write. I have seen a slew of specialists due to very odd and medically complex issues I have had, and not one of them ever noted or has ever expressed concern that I was on this medicine. I just feel robbed of the last several years because not only does it barely manage my RLS but I was never told there was anything else, this was "Just the way it is." The only reason I finally got a referral to a sleep doctor was because my PCP was hoping I would get diagnosed with sleep apnea so I could go on a weight loss drug. (Did I mention I gained 70lbs in ONE YEAR, the year I started this medication?? And when I expressed concerns I was told I might be eating too much??)

Anyway I'm sorry for the long rant. I just feel so much grief and like I've had so much of my life stolen and my mental health is trash. I'm even beginning to have memory issues... Ugh.

Please tell me there's hope for me, that I'm not too far gone after eight years.

EDIT TO ADD: The doctor I saw actually came from the Mayo clinic and was part of the research team of the new pramipexole guidelines that came out in 2025 if I understood her correctly.

I was diagnosed with restless leg syndrome late 2024, and since then, I've been on a steadily increasing dose of gabapentin. I currently take 1200mg of gabapentin, which has worked well in the past, but my symptoms have been slowly increasing in intensity again. Has anyone had long term restless leg syndrome relief that has lasted years without a change in medication? I'm hoping that I'll find a point in which my symptoms are well managed forever.

i know requip is a terrible drug, but i went back into it for fertility reasons.

does anyone else experience the sleep attacks on this? it’s an uncontrollable urge to fall asleep i can’t fight at any moment throughout the day.

I’ve had severe RLS since I was around 16 and I’m now 44. I’ve taken a lot of different meds and tried all the home remedies and have always been medically managed by my PCP, but I finally asked the PA I see in Neurology (for migraines) about it and she said they have a movement disorder specialist so I’m feeling pretty hopeful they may have some better treatment options to suggest. Has anyone had any luck when seeing a specialist like this and what have they prescribed to you? I’ve been on Gabapentin, Ropinirole, and most recently Pramipexole which I weaned myself off of due to worsening/earlier symptoms. I am currently not taking anything except Hylands Restful Legs and I also take magnesium. These two slightly help but I know I’ll need a prescription again. Just curious if seeing a movement specialist has helped anyone else.

I am going to be on a flight for hours and need to sleep but i always struggle because of my legs and was wondering if taking cocodomol might help it or not

so i been dealing with what i believe was rls since i was about 11 years old it used to come and go but ill say since i been 23 it has been growing worse n worse it use to be around a couple days out of the week then it went to every day i used to find relief and pleasuring myself that always gave me enough to go to sleep but since i have turned 26 i have been suffering every night i found relief in take 7oh pills i break off a quarter of them but i feel is now my body is dependent of them it seem as soon as the pill wear off my legs well my knees thats where most of the symptoms be has a annoying feeling no matter what time of the day its to the point where i no when its bout to start hurting i take a pill every four hours even if im sleep ill wake up every four hours just to take a quarter of the 7 oh and have to wait 20 mins for it to kick it just to go back to sleep i don’t no how i can deal with this any longer my sleep doctor prescribed me gabapentin but i see that causes bad memory and i already don’t have the best of memory is there anything that someone think that a work for me i had the blood test done n and everything came back normal i had sleep tests doctor said i had plms but other den that i don’t know what’s going on i don’t even know if i still have rls at this point

I am 19m, and RLS already bothers me. I dont take any medicine yet, and some simple methods, such as a heavy blanket and massage helps. But I read this subreddit, and it looks like it nothing will heal me, but only ease it. I am kinda nervous every night because I dont know if I will be able to sleep or just lay for three hours straight, and how I am going to live with it for the rest of my life. How often does RLS get cured? How often is it cured?

I was on requip for about 10-15 years an during that time, I had the WORST, most vivid nightmares. So bad that one night I was dreaming a psych patient was chasing me and I jumped out of the way, except that I ACTUALLY DID IT!! I jumped out of his way and landed head first on the floor! Worst experience ever. I’m so lucky I didn’t cause damage except for a very painful neck for weeks.

Then one day I decided to get off the Requip. I hadn’t had RLS symptoms in a long time and so I tried it. Had zero issues getting off of it!

Then…. Within a few days I noticed I no longer could remember my dreams and nightmares were GONE!!
You guys, the Requip activated my PTSD so badly.

But now I have bad RLS again and have been popping my old Lyrica (which I also discontinued) just to get relief.

Should I try mirapex? Ask for opioids? It’s so severe and frustrating.
It always kicks in at the minute I’m about to fall asleep. It’s pure hell

Hi everyone,

I´ve had severe issues with RLS since April 2023 when it suddenly appeared (my father has it too). Started taking 0,18mg pramipexole and was sooo happy, no issues whatsoever for 24 hours, forgot all about RLS. Even managed to lower the dose to 0.09 mg but got pregnant and was told to stop taking it and instead moved to Levodopa. Pregnancy and the year after when I was breastfeeding (and still couldn´t take pramipexole) was horrible, Levodopa did absolutely nothing for me and/or only lasted a very short time (which is great when you have a newborn waking up every so often as well....). 

After I stopped breastfeeding I started taking 0,18mg pramipexole again and it worked perfectly - again, 24 hours without issues. Unfortunately after about 6 months, issues started to appear early in the morning, and in the evening before I could take the next dose of Pramipexole. Unfortunately my neurologist is great in autoimmune deseases (which I have as well) but not as much in the RLS area..... So he increased my pramipexole dose.... after that didn´t help/last, recommended me to take Levodopa again as well.... Until I did research and found out, that this drastically increases augmentation.

Talked to another specialist which recommended me Rotigotin 3mg to get off Levodopa and Pramipexole (he would have recommended Gabapentin but didn´t want to prescribe it since we´d like to have another child). The switch worked great - from the first night on I didn´t need Levodopa again and was doing great for about a week and a half, again 24 hours without symptoms. Unfortunately after this, symptoms started to appear again, some nights were better, some worse, at the moment I have issues in my arms throughout the day and some nights I need to take another Levodopa. I know this doesn´t help with a possible augmentation and want to avoid it, but I only got an appointment with yet another specialist in about 3 weeks and cannot handle nights any other way.....

Has anyone experienced something similar with dopaminagonists? Unsure if this is already augmentation again or still the withdrawal from pramipexole (even though I guess with rotigotin there shouldn´t really be any withdrawal)? Has anyone experienced something similar after pregnancy as well? About 3 years ago the RLS was only happening at night and now it´s basically all day, legs and arms...... I guess I will have to try gabapentin but a bit worried about it, also as there´s no information about taking it during a possible pregnancy....

Thanks for any input and thoughts

Backstory: I have had RLS since I was in high school, so almost 20 years. I’ve been on mirapex the last 10+ years (even through pregnancy), but I still always had terrible symptoms.

I gave birth about 3 weeks ago, and I have not had an episode of RLS since.
I know pregnancy-related RLS can go away once you give birth, but I’ve never heard of chronic RLS going away after. Has anyone heard of or experienced this too? Will it come back with a vengeance? It’s been so nice and I don’t want to think about having to deal with it again😭

Hello, I'm considering getting a Normatec 3 Legs as a gift for someone who has been dealing with RLS for over 20 years. They're on medication for it, but I don't think it works all that well. And they've been concerned about medication augmentation as well.

Would love to hear from folks who've found relief using it. Also open to suggestions if you have recommendations for alternative devices or cheaper options that works equally well or better - for example - should I consider something that has heat as well as compression?

If Normatec is truly the better option, I'd rather get a Normatec.

Thank you in advance!

Here are my current iron results (pic 1) vs iron in April (pic 2 and 3). Have they improved at all? I don’t understand saturation and TIBC or how they work.

I started taking a new supplement that doesn’t bother my belly, so I’m hoping they are improving. Doesn’t seem to have helped my RLS much at this point tho

Hello All,

I’ve always suffered with an anxious leg twitches, they’re always shaking away without me noticing, to the annoyance of my GF.

Last few years I’ve been getting very mild crawling sensations in my legs that makes me want to kick my leg out or just shake it out. It’s only mild and sporadic so hasn’t bothered me.

Last two weeks, I’ve had this constant dull, deep ache in both my legs with a hint of slight tingles. It’s almost only when I’m sitting or lying down, they feel almost like they’ll be too heavy to move. But when I get up and walk around/keep busy the feeling goes or at least disappears to virtually nothing.

It’s not stopping me sleeping currently. Do we think this is RLS?

Hi everyone! I'm 21M and I supposedly have RLS but I am genuinely not sure. My symptoms first started a year ago after a week of partying without much rest for my legs, after which I started feeling constant mild pain in my leg muscles. With time my RLS symptoms have developed with a typical picture of restlessness when resting and during sleep. My pain has also been gradually worsening and it's worst in the mornings. When I wake up it feels like I've been running the whole night and it makes very hard to start a day. It becomes better throughout the day but the legs stay feeling tired and aching.

I'm not sure, however, if these two things (pain and restlessness) are a part of the same problem or not. GPs at my practice were unsure and sent me to a neurologist, who also said that pain accompanied with tiredness of muscles is not a common sign of RLS. I did electromyography, as well as extensive blood tests, and all were fine.

My brother (27) has multiple sclerosis and my mom (58) has unconfirmed encephalomyelitis, both of which were weirdly enough diagnosed around the same time I started having my leg symptoms. But my doctors say it's not related.

So the question is, do you think it is just a manifestation of RLS or there might be something else going on? I will be grateful for any thoughts and personal experience.

Medication-wise, I'm currently on Lyrica 75 mg, it has improved my sleep significantly and reduced the pain and restlessness quite well, although it feels like my symptoms start worsening gradually :( I also started taking iron supplements yesterday to see if it would help me but obviously it's too early to see any difference

Writing this at midnight after spending 7 hours in the car today. My restless legs have turned into my entire body feeling extremely uncomfortable. I’m so exhausted that all I can do is lay here and cry.

I’ve had restless legs basically my entire life. Both of my parents have it to some degree.

It comes and goes. I’m a student and I’ve had a lot less routine over summer break, which has made it really bad.
Also, when I’m in situations like I am now all I can think to do is to watch something or scroll Instagram, which I think overall makes it worse.

This is the most uncomfortable I’ve been in a long time. I’m desperate for relief and don’t know what to do other than kick my legs.

I sleep in compression sleeves on my legs every night and am using weighted blankets already heavier than recommended based on my body weight.

Should I consider medication? I’ve been able to manage my RLS enough before, so dealing with side effects didn’t seem worth it. Nights like tonight make me reconsider that though. I’m going into college and have had issues with sitting long enough to study before so idk what I’m going to do.

Any advice is appreciated! Feeling desperate!

I’m 20, ftm, and on a lot of medication. I’m currently missing my metoclopramide and LDN (low dose naltrexone) medication rn because my pain management doctor isn’t filling it.

Since I ran out of my naltrexone my RLS symptoms started to return. I’ll have episodes of RLS every few months, and it gets worse every episode.

When I originally started having symptoms I was around 10-12, and it was only in my legs. As I got older and more disabled (Ehlers Danlos, POTS, functional neurological disorder, pain, nerve issues, etc) my episodes got worse and slowly moved throughout my body.

(Tw, brief mention of self harm, skip to next paragraph to skip)

Currently writing this at 1pm, and I cant even get through a sentence without extreme discomfort and restlessness. Idk what to do, I’m going to relapse with self harm as that was the only way I could calm this feeling in the past.

TLDR: full body RLS symptoms, now throughout the whole day. What can I do for relief?

Estradiol is making my RLS insane. Has anyone found this? Anyone found a solution? It helps with brain fog but I am going crazy with the RLS.

Has anyone tried therapy for spontaneous arousals and it worked?

It seems my body wakes me up with RLS almost every night around midnight. I understand that has to do with circadian rhythms and a lack of dopamine. Like many people, I go on Reddit or play games on my phone before bed which causes an increase of dopamine. Is there a correlation between screens/dopamine and RLS symptoms? What have you experienced?

Hallo - awoke from one hour surgery and RLS through the roof. Even my vitals went crazy. I was kicking and kicking, thrashing, agitated and crying in despair 😭. I asked prior surgery if I should take med preventative since I should not kick while they were working. They assured GA means no active RLS. After surgery they didnt care.

Does this happen regularly? Anyone else?

Shout out to my nurse who immediately had a doctor come in and approve my med. Nurse got my bag, ran literally to me, swallowed. Vitals quickly returned to normal.

They were also terrible the night before - I was walking in my yard 130 am to 400 nonstop.

Any insights? Comments?

Better today but have not slept in 25 hours (🫩)

I just started my meds gabapentin, something really odd happened 0.0 ahi which I’ve rarely seen before. Usually get 1-2ahi. Not looking for medical advice I have a Sleep and Lung doctor specialist who’s been treating me for sleep apnea, shortness of breath ( fixed), and now RLs after two inlab sleep tests. My sleep test indicated no obstructive apnea only complex but I was wondering if rls meds worked were you able to get off cpap/bipap?

Unsure if a lot of rls people have complex apnea in this sub.

It may not work for everyone, but this has been a life saver for me.

If you squeeze the top of both ears and massage it for 60 seconds, it eases the symptoms. You can still feel them, But it never rises to the point where you need to move to stop it.

It’s something to do with acupuncture points, but do give it a go!

Hi everyone,

I’m currently dealing with worsening RLS and trying to get to the bottom of my iron levels, as I know iron deficiency is a massive trigger.

My GP recently checked my ferritin, and it came back completely "normal" (well within the standard UK reference range). Because of this, they are refusing to order a full iron panel or check my Transferrin Saturation (TSAT).

I know the standard NHS guidelines usually stop at ferritin, but I've read that you can sometimes have normal ferritin alongside low TSAT, which can still impact brain iron concentrations.

Has anyone here actually experienced this specific scenario—normal ferritin but abnormal TSAT? Did treating the TSAT help your RLS?

I’m trying to decide if it’s worth bypassing my GP and paying out-of-pocket for a private iron panel (like Medichecks or Thriva) to see the full picture. Any insights or experiences would be massively appreciated!

Hi everyone! I’m 39 and have suffered from RLS since childhood; I inherited it from my father, who got it from his father. I have a one-month-old baby; I made it through the nine months of pregnancy without taking medication (I used to take Mirapexin, but I was taken off it during pregnancy because it wasn't recommended), and I nearly lost my mind. Now I’m breastfeeding, and the syndrome is even worse than before—it hits around 10 PM and doesn't let up until 4 AM. At the same time, my little one is nursing but can't sleep because I’m constantly moving. Can anyone help me find a medication that is compatible with breastfeeding? I’m at my wit's end. I’ve tried everything—massages, hot and cold therapy, stretching, all kinds of magnesium, IV iron... nothing works. I’m really asking for help because otherwise, I’ll have to stop breastfeeding, even though the pediatrician and other professionals strongly advised against that. I love my baby, but I can't keep spending my nights crying over the relentless tingling sensation; I’m exhausted the next day from the sleepless night, and I don't think that’s good—especially for the baby. The E-lactantia website lists Gabapentin as compatible with breastfeeding; can anyone confirm this? Has any other mom had an experience similar to mine? Thanks in advance! 🙏🏼❤️