r/RestlessLegs

I take pramipexole which normally helps but with this current heat (and every summer) it does nothing I really suffer, what are your tips

Maybe they're right, but I don't know what else it could be. Not looking for a diagnosis, just wanna see if my experience is shared by anyone here.

I have chronic deep burning pain in my hips and legs, mainly the front of my thighs, but it goes all the way into my feet. It is 100% symmetrical and bilateral, is the worst at night when lying down, but also felt when sitting or standing still. It makes me move my legs constantly, but it's not because of tickling or "itching", I choose to move my legs as movement relieves the pain momentarily. But sometimes I get a weird feeling like someone is tickling the inside of my kneecaps.

However it doesn't wake me up at night, and it's just as bad in the morning when I do wake up. Most people doesn't seem to describe rls as very physically painful either, which this is, very painful.

I have no other diagnosis as nothing fits. Tests show nothing, physical therapy doesn't help.

Could this still be rls? I have no diagnosis and thus no treatment, I am desperate.

Thanks in advance!

I’m 99% sure I have RLS, my sleep watch and o2 ring had major movements throughout the night. I just finished my second split night test for apnea in the hospital. First was diagnostic and second titration which was successful. In the test it was noted my legs move like crazy and it was the cause of my awakenings, none were due to apenas.

I kinda had a feeling something else was the case since I have been waking up to pee since I was a little kid.

I’m a bit depressed ngl, sleep is stopping me from doing things I want to do. Work has been bleak I love my job but my brain is fried most of the time. My body is so tired I can’t even workout.

I honestly don’t want more pills, what are my options magnesium, iron? I do remember sleeping better when I was talking iron for lunch, and when I had the energy to workout. For some reason I thought my apnea was keeping me up so I’ve stopped all supplements and that cause my sleep to decline I guess due to worse rls and now I can’t workout.

I don’t know exactly what to ask but anything that can help me I’d be grateful for tips.

I read a few posts here about electrolytes but I wanted to add to the info already here.

Ive added electrolytes to my daily routine and cannot believe the change. My RLS is bad and to have a good night sleep is priceless to me. Im using lemonade flavored powder if you are interested in trying it out.

Hi everyone. About a year ago I made a post about how my RLS symptoms reduced on their own by about 80-90% over the course of a couple months. When I made that post, I had this recovery for about 6 months, so this is more of an 18 month success so far.

I don't really know what triggered my RLS, I am thinking it has to do with long Covid, but can't be sure. From 2022 to early 2024, I had daily symptoms at all hours of the day. I was miserable and it affected my quality of life a lot during this time. I did have episodes before this time going back to early childhood, but the episodes lasted a few days and went away. But was the first time I had a major flare-up.

I don't really know what caused it to go away so abruptly and stay away for 18 months now. Typical treatments like medications, iron, magnesium, and others did nothing for me. The only thing I can say is that I am better at dealing with anxiety. I also have had a 75% reduction in my decade long battle with chronic neck, back, and finger pain around the same time, but this is due to me starting to sleep on the floor.

When I made the first post a year ago, some people were rather spiteful, telling me it will come back, but so far it has been getting even better since that post a year ago. My point is to keep having hope, because things can always change. It does not have to get worse over time.

EDIT: After I had my improvement, I did start taking Wellbutrin, which maybe seems to be helping in preventing flare ups, as it helps me with more traditional chronic pain, but can easily be a coincidence as my RLS was starting to really improve well before starting Wellbutrin

I'd love to hear success stories and what worked for you all with PLMD. I'm feeling hopeless since there's only one officially approved treatment from what I've seen and I'm worried that others don't actually work reliably. Hoping the community has better insights 💜 thank you for letting me post again so soon!

Ibogaine cured my severe rls in a single dose. Of course i was skeptical and scared. I had the capsule for a month before i finally broke and took it. It was a lil weird, but not scary. I assume it did as advertised and fundamentally reset my dopamine receptors. Plant medicine miracle @@

I’ve had RLS off and on for years, I didn’t pay much mind before to what would trigger it, but the last few years it’s become clear that heat and humidity trigger it badly. I feel it from my feet to my hips, sometimes even my arms! Like I need to wiggle all my limbs. Sometimes it’s an antsy feeling, sometimes it gets so bad it’s a painful throbbing. At its most annoying, my heel starts itching too. The consistency and spread of the feeling feels almost nerve-like. I also have histamine issues and feel that it could all be a systemic response to a histamine flare triggered by heat (I also get histamine flares to heat from working out).

Does anyone else have this same experience and some tricks to be able to sleep during the summer?? It’s mostly in the evenings but some days if I’m relaxing and not up and about, it can be ALL day.

I’ve tried magnesium, calming gummies with L-theanine & GABA, tying socks around the arch of my feet as a compress (this works until it gets hot!), for the itch I’ve tried moisturizing even when my skin isn’t dry, using a foot file, etc - the itch seems more nerve like, I’ve tried cold rolling on my legs and feet and though it feels good while I do it, if the space is hot, it comes back. I’m just at a loss…

And in terms of considering any type of medication, who prescribes it? Who do I see? Does it even work?

Thanks for any help or suggestions for relief!

95% of the time I only get restless legs symptoms in my right arm. It’s exactly the feeling of restless legs (worst at night, relief from movement, creepy crawly and burning sensation). When I was a child I got it in my legs too but not as an adult.
Has anyone else experienced anything like this? Or have any suggestions for managing restless arms? It’s having such an awful impact on my sleep.

Hi everyone, just joined the channel as I just found out recently I may have PLMD.

I've been struggling for months of unrefreshing sleep and daytime sleepiness. Initially thought it was due to nasal congestion, but a sleep study found some pretty severe leg movements I was not aware of.

What's interesting in the data is the PLM/LM spikes correspond almost exactly to the audio spikes. But most of the audio spikes are not due to snoring (?). What else could be causing the noise? I don't think I kick and make much noise like that, my wife has never complained about me moving my legs etc. Maybe they are loud breaths or something?

I'm wondering what the link is and if that can help me solve the problem.

So far I have tried up to 300mg Gabapentin for 1-2 weeks with no effect. Sleep doctor said that should have been a high enough dose to see an effect. She's getting me to try Progabalin now.

Is this PLM likely to be the cause of my daytime sleepiness? Is there anything I'm missing looking at the sleep study data and what should I try next? I'd love to get my normal sleep back!

For info, I do have good iron levels already, and I do not feel any restless legs at all.

https://preview.redd.it/3ajgeyjc21bh1.png?width=1258&format=png&auto=webp&s=0569653e8cf490b08aa3b658eaa095f63f9bd83c

Is there any research out there or even personal experience of these two having any connection, causing one another, anything? I've tried looking into it and I can't find anything talking about a connection between the two

First time poster, and kinda new to reddit overall, so apologies if i did anything incorrectly. Also dyslexic, so sorry about any typos or grammar fails.

My (in her early 50s) mum has been suffering from restless leg since her 20s, she wakes up 40 times per hour I believe she said, but I could be wrong. She also has a constant headache and back pain, and frequent migraines. She’s seen countless doctors, has countless MRIs and blood tests, and been on countless medications, to no avail.

Thought she has scoliosis, there are no nerves being compressed.

And her iron levels are slightly high, though they used to be low, so it doesn’t seem to be that.

What are other causes of restless leg syndrome we can look into? At the moment she’s surviving with a chiropractor, or someone who massages her and recommends products, like some magnesium supplement she’s using at the moment.

(Just read the rule about no medical advice should be given to under 21 year olds, I am 18, but just want potential causes I can look into with a medical professional, so to my understanding telling me that is okay.)

I’ve recently developed restless legs during a benzodiazepine taper and I’m mainly noticing it during the night. It’s causing me to wake up about 4.5-5 hours after I go to sleep and prevents me from going back to sleep.

Does anyone have any advice on what I could do to help with this so I can get back to sleep?

I’ve read that weighted blankets could help for example. But my GP isn’t being too helpful.

Hi, I might be trying Methadone for my RLS. I'm curious to hear any positive or negative experiences with it. Thanks😊

Worried I've been misdiagnosed. I have had deep burning nerve pains in my legs ranging from moderately bad to agonising, for the last couple of years. Usually moderate-severe, enough to stop me concentrating on anything.

I told the neurologist that I get the urge to move them and sometimes they kick out involuntarily (it builds up then one big kick/twitch) but I'm now realising this is not wholly representative of my experience. More often than not I get the pain without the restlessness.

In fact, it's been two weeks since my neurology appointment and although I have had severe pain all day every day since, I haven't had the urge to move my legs once.

Before I spend £1000s on private treatment and tests, is it possible to have restless legs syndrome without restless legs?

edit: pain is like a deep burning sensation, and also my ferritin levels are low (have been between 11-13 for last couple years)

Since I was I kid I experience this weird feeling in my calves, it's not hurt, not cramps, not numb, or else but feels empty and hollow just like the space.

How do I manage it is to feel hurt, when I put some pain on my calves it feels much better, then I can sleep or else I won't fall asleep

Idk if this is restless legs or something else?

Ha anyone found help with splitting their Gabapentin dose? My neurologist is a great guy but, admittedly, is not an RLS specialist. There is a new RLS specialist I’ll be able to see in September but i’m struggling to figure this split dose out now. I take 600 mg and suddenly I need 800. Too foggy. All suggestions welcome!

I was prescribed 100mg gabapentin for RLS and have been taking that nightly for almost a month. I’m not sure how much it’s helped. Sometimes I think maybe it has, other times I think it hasn’t. It’s hard to tell when there may be other factors at play. And I’ve read that it can take weeks or months to build up enough in your body to have an effect.

But it is annoying that waking up feels harder to do and I tend to feel a bit foggy lately. I want to get a good night sleep so that I don’t feel foggy. I’m worried about other side effects with prolonged use and possibly increased dosage if I continue.

How long does it really take to see if it’s an effective medication for me and whether it would be better to increase dosage or stop altogether?

Hey everyone! Just writing here to seek guidance and want to hear about your experience with treating RLS with pregabalin.

I'm a 32M who has struggled with RLS basically my whole life but it wasn't very severe until my 20's. It would only really flare up if I was really tired to the point of falling asleep, and it's always my right leg for some reason?

(for info, I have had my iron levels checked and they are within spec)

I'm also diagnosed ADD and cPTSD and use Elvanse (European Vyvanse) dosed at 50mg and I take it in the mornings.

I struggle a lot with getting tired and falling asleep in general and have struggled with an insomnia like diagnosis for a really long time. (Due to anxiety, and others). I was started on Cipralex(Escitalopram) back in 2020 to help with my cPTSD but that made my RLS way worse and would struggle even more with my sleep. It's no joke either, my right leg is essentially kicking hard what feels like on interval and it's really uncomfortable. So I quit the SSRI's but that didn't really help, sure it wasn't every night but it was more often than before starting the SSRI's.

To manage my sleep issues I've tried magnesium and melatonin but melatonin really set off my RLS so had to stop that too.. then I got prescribed Seroquel(Quetiapine) 25-50mg at night for the insomnia back in 2022 which works like a charm but of course that too really triggers my RLS but I've just dealt with it cause it legitimately makes me tired and eventually makes me fall asleep but at the end of 2025 I set my foot down and said enough is enough and contacted my doctor and I told her that I've been suffering from this for as long as I can remember and having problems with sleep ontop of that made me go to my wits end. I got prescribed Gabapentin 300mg at first which unfortunately didn't have any effect on the RLS, then she suggested pregabalin but having heard how addicting it is and such I was very reluctant so I asked if there was a possibility to up the Gabapentin dose to give it a last try so it was upped to 600mg which didn't have any effect either so eventually I gave in and got prescribed Pregabalin 75mg capsules.

I had mixed results with the 75mg dosage as sometimes it gave full relief while other times it just suppressed the RLS a tiny bit so that the "intervals" were further apart, so after that I was upped to 150mg and I've had somewhat good effect on that and I don't suffer nearly as much as I did prior to upping the dosage. But it seems really hit or miss for me? Like, I take the pregabalin around 9PM since I know it takes like 2-2.5 hours to work then aim to go to bed around midnight. Sometimes it gives relief through the whole night while other times it doesn't give relief at all and feels like the effects of the pregabalin has already worn off but that's literally impossible?

The only thing I can think of is that the days I have full effect are days where I take it on a completely empty stomach because I've forgotten to eat all day due to the vyvanse doing it's thing but days where I eat dinner or something between 5 and 7PM then it doesn't seem to work at all. Does taking it with food in my stomach really delay the onset THAT much?? Is there anything I can do to make it act faster without having to completely starve myself after midday??

edit: I do realize I could take it earlier in the day but then I also risk the effects will be worn off by the time I go to sleep due to the short half-life of the medication..

I do apologize for the long post, hope to see your responses! 🙏🏻

Hey there. My RLS comes and goes these days. I currently take Pregabalin and Clonidine among other OTC supplements.

I would say one of the most consistent things for me is eating Taco Bell before I go to sleep. My BMI is 28 so I'm not like significantly overweight, or underweight.

Why does Taco Bell help so much???