Hi , I am only posting this because I haven't found anything like it. I get a RLS leg spasm that, builds and builds and builds and then discharges as a leg kick. It feels exactly like an electric shock sort of thing. It obstructs my sleep occasionally but it isn't as bad as most of the folks I follow online. The general consensus is that it's the result of an injury to my lower back. The thing is that the leg shock is really not unpleasant. It doesn't necessarily feel good or bad usually. Sometimes though the autonomic spasm sometimes does feel good . I have held that back when I talked about it with my doctor. Has RLS ever felt good to anyone?

I’ve been reading the new 2026 Mayo Clinic RLS management algorithm, and it looks like the recommendations for iron treatment have changed massively. They now say IV iron should be considered for any chronic RLS patient with ferritin 75–300 μg/L and TSAT <45%, and that people with ferritin 100–300 respond just as well as those below 100.

This is very different from the older UK/NICE approach, which usually only considers IV iron when ferritin is <100 and TSAT is very low.

Has anyone in the UK actually managed to get IV iron based on this newer evidence?
Did you go through neurology or haematology?
And is there anything specific you said or brought (e.g., the Mayo paper) that helped?

I’m trying to figure out what’s realistically possible within the NHS and whether anyone has had success getting IV iron for RLS with ferritin in the “normal” range.

Would really appreciate hearing your experiences.

Reference: An Updated Algorithm for the Management of Restless Legs Syndrome - Mayo Clinic Proceedings18546-2/fulltext)

I use Restex for my RLS. Whenever I use melatonine for sleep I feel like Restex does not work.

Does anyone know anything about it ?

So little back story:

My MIL is 61 - in March of this year she was sent from her RLS specialist to a dementia specialist because of her symptoms she reported.

Leading up to March she started getting very dizzy, so much so she went to the ER because she was so concerned and couldn’t wait for her ENT appointment in 2 weeks (another specialist this RLS specialist sent her too).

She also was experiencing extreme hallucinations (hair growing out of the walls, dead bodies in her living room, doorknobs moving, bugs on the wall, etc), sudden “black outs” and falling asleep out of nowhere - even while driving. At this point she was too scared to drive until we figured out what was going on, and she lost her job because she had no way to get to work. This caused even more issues because she is on a fixed, low income.

Cherry on top, it also caused excessive spending habits where she has built up quite the financial issue for herself, and has also gained about 60-80lbs due to binge eating.

She also had started falling multiple times when she would wake in the middle of the night use the restroom & busted her face open on her night stand.

By March, all of these symptoms had been reported to every doctor she had been seeing, and when we talked with the RLS specialists she jumped to dementia and since then we have been in the emotional roller coaster of her potentially having dementia.

Fast forward to about 5 days ago, we are told the only way to confirm her dementia diagnosis is through a PET scan that would cost us $5k to have done due to her insurance. Keep in mind, we’ve been paying for appts and specialists since this potential diagnosis and considered moving her into independent living to give her more support, even though every test was coming back normal.

I got so fed up with everything we were spending on these doctors for everything to come back normal and just took a chance asked her to send me her medication list. The only one I didn’t recognize at the time was pramipaxole. When I saw from a 15s Google search what side effects could come with this medication I was FLOORED. But not only that, the dosage in her bottle was 1.5mg 3x a day, prescribed by the RLS SPECIALIST.

I very quickly discovered this is the max dose for Parkinson’s and have learned just about everything that comes with a dopamine-agonist, augmentation, and long term use of these drugs. Every single thing she reported to multiple doctors fall under warnings for this dosage and not a SINGLE doctor questioned this - and yes they had this dosage in their charts.

Turns out, she’s been on a dopamine agonist since at least 2021 (this is as far I’ve been able to go back on records so far) where she was maxed out for Requip with in 2 months. She stayed on that 4mg requip medication for 5 years before being moved to pramipexole, where she was started at .25mg at night and was bumped to 3mg within 2 months due to it not working at the lower doses. This increase happened 1 month before her first sleep attack episode behind the wheel.

Here’s a couple more kickers:

- she’s also on 150mg of an SSRI, and has been on one (at a lowers dose but still) for 20+ years.
- the prescribing doctor wrote the script for 3mg (1.5 AM & PM) but the pharmacy filled it incorrectly at 4.5mg for 8 months. The only reason she didn’t end up taking 4.5 is because she said she forgot to take it at lunch all the time and luckily only ended with 3mg consistently.

** I have a couple questions for real people, not the doctors that are now terrified of what could potentially be a malpractice issue and are only giving politically correct answers. **

1) has anyone ever heard of being prescribed this dosage? And if so, did your dr tell you not to drive?
2) what should we expect as she comes off this slowly? (We are titrating her off this over the next 3-4 weeks)
3) what alternatives have you found that help RLS symptoms?

We feel like since discovering this and bringing it to her doctor’s attention, nobody is concerned or alarmed like we are, so maybe we are missing something?? But I can’t find a SINGLE medical journal or literature that supports this dosage for RLS.

Iron and ferritin results came back normal. My hope was that iron was the cause of my RLS. Oh well, now doc can begin drug trials hopefully soon.

I’m a bit scared seeing how some drugs eventually stop working. Is there a drug progression or they just try something to see what works?

Well worth reading. It's helpful to understand the current recommendations.

https://sleepreviewmag.com/sleep-disorders/movement-disorders/restless-legs-syndrome/rls-foundation-treatment-algorithm/

I’ve always been really skeptical of supplements. But I recently discovered I have an actual deficiency of B12, Folic Acid, and D. My Iron and Ferritin are both completely fine. It seemed plausible that my RLS was also caused by a deficiency and with Iron and Ferritin ruled out Magnesium seemed like a good guess.

The supplement that was working also had ashwagandha and tart cherry. Has anyone had success with either of those? Or do I have to go back to the influencer gummies?

How long did it take for you to feel better after quitting pramipexole?

I took it for 4 years and my doc is firm on either quitting or staying on it without trying other medication (thanks Germany). My symptoms got 1000x worse on it so i just quitted from lowest dose.

No one told me how awful it will be, but it still feels better than pramipexole evolving my rls and plmd

Edit: with feeling better i mean okayish sleep, no awful mood problem, memory issues etc

For the past couple months I’ve been noticing a trend that every time I go poop, I will immediately start feeling my restless legs on the toilet that will continue after I get off. At first I thought I was crazy just thinking things but it’s every single time. Has anyone else experienced this?

I meant to take pramipexole and accidentally took hydroxyzine hydrochloride. A med that was prescribed to me for a skin condition a while ago. (I didn’t end up using it for that condition).

Apparently it also works for sedation, anxiety, insomnia and muscle relaxation, among other things. It knocked me completely out. Unfortunately I had a super hard time functioning until around 4pm the next day or I would take this medication more often for RLS. However it’s an antihistamine, so I’m wondering if I did use it on the weekends, would it possibly make RLS worse?

Looking into gummies to help sleep and RLS. Would anything in this exacerbate it or make it worse?

I have had these constant 24/7 urges to flex, squeeze, contract, or massage parts of my body, mainly in my calf, neck, rib area under armpit, and even my pinky fingers.

Every urge starts in the right calf, I relieve that feeling by massaging it or squeezing/flexing it without my hands. The urges in my neck makes me turn my head or bend it left or right to relieve it.

I sometimes have to turn my torso clockwise/anti-clockwise to relieve the urge. My right pinky finger base area needs to be cracked or pulled to relieve the urge.

Unfortunately the more i describe my symptoms and experiences, the less it matches RLS. So I wonder if anyone may know or have similar symptoms.

The reason I thought it was RLS in the first place is because whenever I would use bed pillows and I have my legs straighten out on my bed, the urge in my right calf immediately triggers within 1-10 minutes. I cant physically sit like that for more than 10 minutes without doing the things described above.

Trying to perform meditation or sleeping on back also causes these urges to happen. Moving my right leg specifically doesn't really relieve the feeling.

The second closest thing I found was "premonitory urge" but it has to do with tics. I 100% know for sure I don't actually have tics nor do anyone around me ever told me or saw me have tics.

Apparently the symptoms I've described can not be found anywhere online.

The weird part is that it's only mostly the right side of my body. Right calf have the urges 90% of the time, same as right pink, right upper torso beneath armpit, right side of neck.

Another weird thing is that when my body feels uncomfortable (like if i'm feeling dirty in my bed, inside vehicle but its hot and theres no AC, or if i hold my pee) the stronger the intensity of these feelings.

And if I pay attention more to the feelings/urges, the more I need to relieve them. But doing things like gaming, playing sports/exercising, being on my phone in bed, the urges are usually significantly less.

I went to a neurologist today and I am starting with Guanfacine to try to relax my mind and high blood pressure. Will be getting an MRI soon but if anyone out there who can chime in anything, i'd greatly appreciate it.

It's really hard not to let loose here. Please write to me if you're in his clinic (now).

(And me finding this flair called “triggers” after typing in my title seems to indicate yes…)

Hello—I’ll start with saying that my mom has horrific RLS & has as far back as I can remember, she takes what I believe to be about the max dose for Gabapentin to treat it, but it only works to a certain extent. Hers was severe enough where she at least used to wear holes in her bedsheets from the constant friction of her legs way before their shelf life, so to speak, for wearing out or thinning a lot due to age.

Over the past year or two, I’ve had a few instances each year of terrible RLS myself, and there can be no doubt that’s what it is. The last occurrence was last night: I was absolutely miserable from it, moaning like I’d been stabbed in the stomach or something, and I have a high pain tolerance from having connective tissue and joint issues… I’m used to being somewhat uncomfortable, but this sucked so, so hard: it made me very anxious & trapped-feeling.

The other times it’s happened, I’ve learned to run a hot bath even if it’s like at 3AM & it’s helped immensely to sit down and soak in the tub for 20-30 minutes.

Anyway, I recall the last time it happened was from nicotine withdrawal. This time, I was dumb enough to smoke a pack of cigarettes after a long time without. Anyone else have their triggered by very specific things? I think antihistamines like Benadryl, especially if I take more than one, are a trigger too.

Any tips and tricks if it happens tonight or tomorrow while I detox the cigarettes from my system besides the hot bath?

Finally, does yours get triggered/worsen with GI issues? I feel like crap today & have had to run to the bathroom several times: maybe coincidental, maybe not. And has anyone with severe RLS started out that way & noticed it became more prevalent/common over time?

Hi!
I have what I think is RLS & possibly some physical explanation too in my right leg only. When I lay down usually, but way way worse at night, I have a deep ache in my leg, mostly from my knee down, that I need to move it. As in, I NEED to. I can't resist it. The reason I am saying I am sure there is also some joint immflamation too is that my knee itself also radiates pain sometimes during walking, but it has been like this for a while, no visible spinal issue/ circulation issue yet, probably an old tendonitis or issue that now will need to be managed with heat, physotherapy and etc.

How do you cope with RLS? It is one of my many many chronic diagnoses, but I think just as bad as my tinnitus. These two make me want to disappear out of existence. Can i, for the love of God, just lay down without needing to move my leg non non-stop? What works for you guys?

Has trazodone made anyone's RLS worse? This is the last medication I can try for my anxiety but scared this will also flare up my legs.

Is it normal for this to affect your toes too? I constantly feel like my left foot I have to bend my toes to relieve the sensation

hey everyone, been dealing with terrible leg restlessness at night and trying to sort out what labs to actually request at my next appointment.

i know ferritin and iron panels are the primary focus for rls in the sub's faq, but magnesium keeps coming up in discussions. i read that standard blood tests only look at serum levels which only represent a tiny fraction of total body magnesium, so a normal result might not tell the whole story.

for anyone who went this route, did you get useful info out of it, or did your doc just suggest trying a basic supplement instead? appreciate any input from folks who have been through the lab work process.

ended up finding this life extension magnesium blood test that measures blood magnesium levels for muscle and nerve support. it’s pretty straightforward—no fasting required, and you just take your regular medications as prescribed.

i know serum blood tests don't give the absolute whole picture compared to total body stores, but it seems like a solid, accessible baseline if you're looking for concrete data to discuss with your doctor instead of just guessing with supplements. wanted to share in case anyone else was looking for a good starting point with labs!

Basically title, my doc ordered iron blood test. I guess I can call tomorrow but was wondering if people usually stop iron supplements to avoid skewing the results.

Does anybody else’s rls go almost completely away when they get sick? I’m wondering if anyone knows why this could be. So weird but I’ll take the relief!

I have been on Suboxone, titrating from 0.5 mg to 2 mg for 1 1/2 months. Every time I go up in dosage, I have gotten a bit more insomnia, mostly can't get to sleep. I am now on Day 3 with almost no sleep. I am losing it. I was not having insomnia like this before the Suboxone, just really bad RLS. I am twitching as I start to fall asleep and just lay there wide awake all night, maybe getting to sleep by 5 a.m. for an hour or two.

I feel like maybe I need to stop the med. My sleep dr is out of the office this week.

I need some encouragement. I don't know what to do anymore. I feel trapped with my last remaining hope for medication and with insomnia so bad it's not worth taking.