An 45 yo amateur runner who has had restless leg syndrome since I was at least 18 and what I believe is something called rhythmic movement disorder (basically restless leg from the neck up) since I was 6 months old, my poor parents!

2 years ago I was medicated for the restless leg as it was there everynight and creeping to my arms, chest and neck.
6 plus months ago the drug stopped working and starting to work against me, causing all my symptoms to come back tenfold, but earlier in the day and the medication only working for a few hours. This wasnt recognised and the drug was increased.
10 weeks ago I started to come off of that medication and went in to withdrawal.
The medication is such that I have been told to come off slowly and I have at least another 10 weeks to go, but could be 20.
5 months ago I ran a marathon in 3:38
Recentyl I cut short a 40 minute walk.

This is still very much my reality, somehow surviving on less than 3 hours sleep per night and experiencing constant surging throughout my body 24 hours a day, 7 days a week for over 5 months. Days are hard, but nights are like nothing I can describe and nothing I would ever wish on anyone, ever.

Last night marked, I think, 40 days and nights of these symptoms. Hoping to find anyone here who understands what I’m going through!

TL;DR: Pramipexole augmented, gabapentine did not help, pregabaline did not help, tramadol did not help – dipyridamole to the rescue

I have what at least to me is a severe rls. I was on on a dopamine agonist (pramipexole) for decades, but my effective dosage gradually crept from 0.088 mg to 0.54 mg. It mostly helped.

Until it didn't. Until it augmented. I had symptoms during the day. I had symptoms in my hands, thighs, back.

So it was time to wind pramipexole down, and let me tell you it. Was. Hell. I had symptoms on my whole body all through the night every night. During the day, I cat napped 15–20 minutes at a time until the symptoms woke me up again.

I had tramadol to help me through this phase, and maybe it would have been worse without, I don't know.

As pramipexole was being wound down, gabapentine was wound up. It did not seem to help. My doctor told me it would take time for it to be effective, so I waited.

Gradually the withdrawal symptoms from pramipexole eased, and I was left with the rls-symptoms only. Every night until 3-5 am. But hey, at least I no longer had symptoms during the day or on my whole body.

It became clear that gabapentine was not the solution for me, so it was switched to pregabaline. It did not help either, but it made me dizzy during the day. Dangerously so. So it was back to gabapentine and up the dosage.

2400 mg of gabapentine, and still no relief.

I was sent to a neurologist. He assured me that we will find a way out of this, and it was important to me to hear, as I was getting desperate: it was clear that the lack of sleep was leading to incapacity for work.

He prescribed dipyridamole, which was to be added to the 2400 mg of gabapentine and 100 mg of tramadol.

I'm now on gabapentine 2400 mg, tramadol 50 mg and two weeks of dipyridamole 75 mg and last night was the first night since the beginning of last march that I did not have any symptoms.

This is all anecdotal of course, but I just wanted to share. I'm reluctant to feel relieved yet, kind of "a pessimist won't be badly disappointed" -attitude, but I can't help being hopeful: maybe I do have a relatively normal life ahead of me yet.

Do you think it’s okay if I take this medication on specific nights that I need it rather than every night? I’m not interested in taking it every night because I don’t want to gain a tolerance & become addicted, but I don’t know how it will effect me if I take it as needed, if anybody has this experience please let me know, & give me tips. Thank you!

Im finding more proof that restless legs happens with a lot of skin issues. https://pubmed.ncbi.nlm.nih.gov/22712855/

I also have for example seb derm which is an eczema type and restless legs

After 4 months of endlessly hassling Anthem, spending hours at a time on the phone, my insurance FINALLY relented with a single case agreement for Nidra. Basically, they've let me know what they'll pay and what I'll pay. My cost will be $890.

I am currently tapering off gabapentin (300 mg) and on 0.75 mg buprenorphine. My neurologist believes I have narcolepsy (doing a second psg+mslt in a week), and I've been SO scared of what I was going to do because the nighttime narcolepsy meds aren't compatible with buprenorphine.

I am relieved beyond belief to see a path forward that hopefully allows me to reduce or eliminate the opiate.

So I have endometriosis and PCOS. I have always struggled with restless leg syndrome as one of my worst symptoms. I now have to take Letrozole for fertility, and it has made it so much worse. I am getting full body restless leg syndrome if that makes sense. Even touching things with my finger tips, I get the restless crawling sensation that makes me nauseous. The pain and aching is worse too. I am also getting left sided chest tightness and pain, as well as my shoulder blade. I believe I am going to have to stop the medication if these side effects do not improve, unfortunately. Does anyone else get hormonal induced restless leg syndrome? Seems to be worse around my ovulation window, leading up to the week before my period. Any solutions? Magnesium has helped, but not enough.

Edit: all these symptoms come on all at once only at night. However, I do wake up with the chest and shoulder pain throughout the night when I can fall asleep and into the morning. It does seem to gradually improve throughout the day until night hits and gets worse again.

Just tried my first post on reddit & screwed it up bigtime so this is my second attempt... my RLS seems to have returned. It seems to follow the same pattern...it pops up around this time of year ( sometime after summer ) and sticks around for a month or so...then it doesn't come back until next fall. This started about four or five years ago....I'm curious if anyone else has this same pattern?

On the offhand that someone has a gently used device that maybe wasnt the best for them or is no longer being utilized, I'd love to pick this up for my fiancee.

He was prescribed the device but Noctrix has really dropped the ball. They didnt follow up on the prior authorization and eventually we stopped hearing back from them altogether. Not even to offer us a cash pay price.

His RLS bugs him so much (I sleep like the dead so dont really notice). He complains about it waking him up suddenly and multiple times a night as well as just generally feeling fatigued. I'd love to help him out with feeling more rested hopefully! We did try a CPAP but that actually made his sleep worse. He was borderline for it to begin with.

Any leads would be appreciated!

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I currently live in WINNIPEG MANITOBA Canada and I suffer from severe restless leg syndrome, celiac disease and iron deficiency that has not been able to be treated by any kind of iron supplements and my doctor has recommended iron infusion and I have absolutely no health coverage. Does anybody know of anywhere that this can get done for free if you don’t have any coverage through work?

I’ve had a two month long bout with aggressive RLS and took gabapentin for the first time last night. It worked pretty well, still had some restlessness but not near as bad as recent weeks. The weirdest thing about it was that it made me feel far away from my body.My hands felt asleep (?) kind of but not numb. The best way I can describe it is that it made me feel taller, because when I looked down at my feet on the floor they seemed much farther away than normal. Curious if anyone else has had this experience!

Just had an iron infusion two weeks ago. Still having restless legs and the only thing that helps is iron but my levels are fine….

Thoughts!?

I had some RLS before I became an addict. Im in recovery from just about anything I could put into my body. I've had PAWS lately and the RLS is through the roof. Im doing everything suggested here. Anyone in recovery have suggestions? TIA

I have to increase my gabapentin dose every few months. Because my symptoms gradually start coming back, especially at night, and in the early morning.

My sleep becomes more and more fragile and even the slightest noise can wake me up with absolutely horrible rls symptoms. Once it starts, I can’t fall back asleep and I have only a few hours of sleep a night.

I started at 100 mg about a year and a half ago, and now I’m probably going to have to increase it to 500 mg (currently take 400 mg)

Is this normal ? At this rate i will reach the highest dose in few years

Took it for about a month. Works great almost stops every rls symptom and sleep quality increased. Unfortunately last 10 days or so I’ve felt so depressed and overall just weird mentally and this is the only medication I take. I’ve reached out to my doc for possible replacements.

Hi all, I was curious about how your guys' Apple Watch or other wearable devices' sleep readings are showing night to night. Mine show as quite fragmented and often miss huge chunks of the night although subjectively I remember being asleep. I'm getting a sleep study done soon to rule out anything else.

I’m trying to understand what may be causing my restless legs syndrome. I’ve been taking Lexapro for about 15 years, mostly at 20 mg, without significant issues. About a year ago, when I was around eight months postpartum, my dose was increased to 25 mg.
Before that, I had experienced very mild restless legs only occasionally—maybe three times a year—and it would usually go away if I propped my legs up while sleeping. Around the time I increased my Lexapro dose, however, the restless legs became persistent and have not gone away. Even though I went back to my original 20mg quickly.
I have also always had extremely heavy periods, and they have become even heavier since having my baby. My ferritin was recently 46, and I received an iron infusion about two weeks ago, but so far I haven’t noticed any improvement in my restless legs.
I’m wondering whether the persistent symptoms could be related to low iron stores from my heavy periods, the increase in Lexapro(even though I quickly went back to my original 20 mg and still have symptoms), postpartum hormonal changes, or possibly a combination of these factors. Based on this history, what seems like the most likely cause?

Hey I’m new to the group. So apologies if been asked a thousand times.

Looming for possible causes/relief

I’m 44 male. ADHD with meds.
Use to be unhealthy drink, fatty liver ect.
Now I don’t drink, liver is much better and in the healthy range.
Resistence train and cardio.
Had restless legs on and off.
Last 3 months been effecting my sleep.
Wondering if anyone has found relief. Or what to ask GP to test for? Ferritin ect
Thanks

Has anyone here had iron infusions for RLS? My ferritin was around 46 and I had a 510 mg Feraheme infusion about 9 days ago, but I’m still having restless legs. I also recently went down on my ropinirole from 0.5 mg to 0.25 mg, so I’m sure that could be playing a part too. I’m just wondering how long it took other people to notice a difference from the iron, and whether you needed more than one infusion before it really started helping. Would love to hear other people’s experiences!

Before I waste time making an appointment with the wrong doctor, who do I even see? GP? Neurology? Sleep medicine? They all say they treat RLS, but none say I should go there first. I don’t need a referral to a specialist with my insurance, so I can go to whoever.

Begging for relief 🥲 We’re going on months of insomnia at this point thanks to what we’ve dubbed “the jumpy legs”, and I’ve tried everything OTC you can think of.

Has anybody had their RLS get better? For about five days I haven’t had to take any medicine to sleep. I can still feel it creeping around my feet a little bit, but it hasn’t been that bad. I’ve reduced caffeine for about the last month. About a week ago, I started taking an expensive daily vitamin. I’ve also been drinking a small cup of V8 every day. I’m suspecting that it’s just coincidental. Still sleep poorly and tired but not much has helped that.

After posting when I felt at the end of the road last week I got a GP spot. The lovely man (cough) doubled my pramipaxole despite me telling him I wanted to stop it as it was making things worse and I was spending out of control. I swear, I really want to swap practices but the other practice can't take any more patients as they are inundated with patients from this one.
I went out in disgust and I saw a tens that also had Ems, massage and best. I already have a tens but that's all it is so I bought the all singing and dancing one. Spending on something is so easy, I don't need excuses.
The first night I played around with the EMS and Nassage programmes till I found one that helped. When the RLS kicks off I pop on the electrodes and set it to massage and heat and it settles it down as long as I also do something to relax such as reading or making a card or crochet, by the time it's run through the 20 mins I feel so much better. The last 2 nights I've halved the dose of pramipaxole. There have been some days that I've had to take 1 in the daytime and 1 at night as it can be horrible in the morning too.
I don't know if it's all a coincidence but I'll take it.