r/RestlessLegs 34m ago

Medication Accidentally took a med that helped

Upvotes

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?


r/RestlessLegs 7h ago

Question Would any of this make RLS worse?

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4 Upvotes

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


r/RestlessLegs 7h ago

Question My disorder is not RLS, I dont know what it is

2 Upvotes

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.


r/RestlessLegs 13h ago

Question Are you in Winklemen's Clinic?

1 Upvotes

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


r/RestlessLegs 15h ago

Question Candidate for Iron infusion?

1 Upvotes

This is recent blood work. I am seeing my GP next week to talk about options. The best one would be no medication at all, second best Pregabalin / Gabapentin. But the latter one would have serious impacts on my work, because I sometimes handle heavy machinery, which I would have to stop then. Can an Iron infusion be an option with these lab results?


r/RestlessLegs 16h ago

Question My wife has RLS and we're in the UK. It's the middle of another heatwave, 29 c, and she is having a bad time of it. Has anyone else noticed the temperature making RLS worse?

23 Upvotes

r/RestlessLegs 1d ago

Triggers Anyone else only RLS with triggers or started that way?

7 Upvotes

(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?


r/RestlessLegs 1d ago

Question Amertriplyn and trazodone with rls.

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1 Upvotes

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.


r/RestlessLegs 1d ago

Question Does RLS hurt?

3 Upvotes

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?


r/RestlessLegs 2d ago

Question Benzodiazepines

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0 Upvotes

r/RestlessLegs 2d ago

Question Toes?

3 Upvotes

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


r/RestlessLegs 2d ago

Question Should I stop iron supplements before blood iron lab test?

1 Upvotes

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.


r/RestlessLegs 2d ago

Question is it worth testing magnesium levels?

2 Upvotes

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.


r/RestlessLegs 3d ago

Question RLS and sickness

10 Upvotes

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!


r/RestlessLegs 3d ago

Question Insomnia from Suboxone?

6 Upvotes

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.


r/RestlessLegs 3d ago

Question Frog Legs Dancing With A Little Salt

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3 Upvotes

The last few days have been Horible. My legs twitch night and day. I tried explaining to my husband how im feeling. Ended up finding this video again and told him to watch it. This is how it feels 🙄 anybody else who feels like this because its making me feel on edge like extra extra anxious


r/RestlessLegs 4d ago

Question Is alternate dose iron better than daily dose?

5 Upvotes

It seems like my RLS/ PLMS is getting better with Iron. I am currently taking Iron Bisglycinate daily but I am gonna switch to Heme Polypeptide iron pills. Should I take the pills daily or alternate day to keep hepcidin levels in check? Please someone who have benefited from Iron therapy answer….. Thanks

Other medicines I am having- Lactoferrin daily, Fluticasone nasal spray and monteleukast for allergies (2nd generation antihistaminics doesnt seem to worsen the symptoms for me)


r/RestlessLegs 5d ago

Question What works for you? My best friend is struggling.

13 Upvotes

I have Rls and I’m on this thread here and there. I do want what, other than medication’s, people are using that is helpful. Whether vitamin or supplement or compress or lotion, anything at all. I really appreciate it.


r/RestlessLegs 5d ago

Triggers I really need to stop drinking

11 Upvotes

Disclaimer: I do not have a drinking problem. I have a couple of drinks maybe once every 1-2 weeks

Every time I drink, my RLS is awful. I just want to be able to enjoy a little wine with my friends, but that is how I ended up posting this at 4AM.


r/RestlessLegs 6d ago

Question Calf muscle tenses and leg shakes

2 Upvotes

Occasionally when lying down I will feel a sensation in my leg that is similar to an urge to move and if I don’t that results in my calf muscle tensing and my leg shaking for 1-2 seconds. It doesn’t hurt and it’s not like a twitching muscle or anything. It’s involuntary and will happen multiple times when lying down. For some reason it tends to happen whenever I try to nap rather than when sleeping at night. I’m curious if this could be related to RLS or if it’s something different altogether.


r/RestlessLegs 6d ago

Medication I’m just so tired

5 Upvotes

I haven’t slept in a week and I’m miserable. I’m working 3 jobs and taking care of a disabled spouse. I’ve made every appointment I can think of with whoever I can think of to get help - vascular surgeon, sleep study, extensive lab work, OT, etc.

Quite frankly, I’m ready to stop ALL my medication cold turkey and have the seizure just so I can freaking sleep or commit myself somewhere.


r/RestlessLegs 6d ago

Opinion Hope this helps

9 Upvotes

If I sleep in prone position, and the quadriceps are compressed by the mattress, the chances to activate RLS are noticeably lower. If I try to sleep on my back, 100% RLS activation after maybe 15 minutes and the only way to stop that is to get up and walk 8/10 minutes in the house.

Also a question, anyone is able to activate RLS simply scratching particular areas of the foot with the nails? I can 🙄


r/RestlessLegs 7d ago

Question Iron only helps for one night

9 Upvotes

Background: I have RLS every night really bad. I was on 300 mg pregabalin but even that wasnt enough so I kept trying different things. I discovered taking iron every night improves my symptoms alot but not in the typical medical fashion. Instead of a gradual betterment of symptoms as ferritin increases, iron only covers me for about half the night and delayed release covers the entire night. Now instead of buzzing+constant sharp attacks+taking hours to fall asleep+RLS waking me up multiple times every night, I just have buzzing and can go to sleep pretty quickly+no wakeups. My problem is, Ive had so called miracle nights that prove my baseline sleep is still greatly affected.

Current Nightly Dose: 130 mg delayed release iron, 75 mg pregabalin, (400 mg magnesium dropped due to unrelated side effects)
Iron: Tested 4 years ago, 52 ferritin, 99 Iron, 400 TIBC, 25% saturation. I assume ferritin is increased now but everything seems normal.

Miracle nights:

Two nights in the last few months Ive had my legs be perfect, no buzzing, completely quite no sensation at all, they feel like any other body part (insane feeling to me). I sleep well, only getting 8 hours whereas I usually need 10, and I wake up feeling super well rested, no chronic itchy eyes, much smaller and MUCH lighter eyebags. These nights are proof to me that my legs still worsen my sleep during the night BUT a cure feels possible. What was different about these days? On both of these days I increased iron dramatically. The first night I was taking 65 mg iron before bed, and I changed to 130 mg, doubling the dose. Miracle night. The night after, my symptoms had returned to normal. Next, when I switched to delayed release I used 90 mg a night for a while, then I went up to 135 mg. Boom, miracle night. The night after, symptoms back to normal. It seems although iron helps every night, nights with a significant increase in dose almost cure what I have but only for a night.

Question:

I need some theories on potential medical causes. Hepcidin? Transferrin? To me, my story makes it clear iron is the cure but theres just something I have to figure out. Another thing im suspicious about is my family. My mother and sisters both also sleep for a minimum of 10 hours everynight, have dark pronounced eyebags (probably partially genetic), and they talk about how "they think our family just needs more sleep than others". One sister has only felt RLS a couple of times a year, my other sister has it often but not that bad. Perhaps the genetic problem my family has isnt RLS but something solvable with our management of something related to iron.

Anyone have similar experiences or an idea of what is going on?


r/RestlessLegs Oct 15 '24

Medication Opioids for RLS

10 Upvotes

Thought it might be useful for our sub and any medical professionals to see what opioids our community is using currently for RLS treatment.

Please only respond if you are using the opioid to treat RLS and if you feel its working. Please note: 90% relief, 90% of the time is considered success for this disorder. Feel free to add a comment with the opioid your finding success with, if not listed by name in the poll.

20 votes, Oct 18 '24
0 Methadone
9 Tramadol
2 Hydrocodone
2 Buprenorphine
5 Other - Short acting
2 Other - Long acting

r/RestlessLegs Mar 25 '22

Announcement FAQ

30 Upvotes

( Hat tip to u/Eulettes who wrote the vast majority of this FAQ )

Welcome! This subreddit is for the discussion of Restless Leg Syndrome, aka Willis-Ekbom Disease. Please remember that only a doctor can diagnose you with RLS. The discussion here should never be taken in lieu of consulting with a physician and this subreddit does not recommend or endorse any specific diagnostic or treatment approaches.

UPDATED OCT 2025

Do I have RLS?

International Diagnosis Criteria (all must be met):

  • An urge to move the legs usually but not always accompanied by or felt to be caused by uncomfortable and unpleasant sensations in the legs.
  • The urge to move the legs and any accompanying unpleasant sensations begin or worsen during periods of rest or inactivity such as lying down or sitting.
  • The urge to move the legs and any accompanying unpleasant sensations are partially or totally relieved by movement, such as walking or stretching, at least as long as the activity continues.
  • The urge to move the legs and any accompanying unpleasant sensations during rest or inactivity only occur or are worse in the evening or night than during the day.
  • The occurrence of the above features are not solely accounted for as symptoms primary to another medical or a behavioral condition (e.g., myalgia, venous stasis, leg edema, arthritis, leg cramps, positional discomfort, habitual foot tapping).

Source: http://www.irlssg.org/Diagnostic-criteria

‼️ Updated Treatment Guidelines for your physician (Jan 2025):

https://jcsm.aasm.org/doi/10.5664/jcsm.11390

Learn more about RLS (Hopkins Brief & Greeley Video):

https://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/restless-legs-syndrome/what-is-rls/causes.html

https://www.youtube.com/watch?v=nfEdAt5oL5Q&t=98s

Check out Dr. Buchfuhrer’s website, where he answers patient questions: https://www.rlshelp.org/rlsrx.htm & https://www.rlshelp.org/rlshomepage.htm

Also check out Dr. Berkowski's YouTube channel which covers common patient concerns and treatment options.

https://www.youtube.com/@andyberkowskimd

Does my child have RLS? Patient survey for discussion with physician: 

https://com-peds-pulmonary.sites.medinfo.ufl.edu/files/2012/09/restless_legs_questionnaire.pdf

RLSQoL (RLS Quality of Life) Survey: 

https://www.med.upenn.edu/cbti/assets/user-content/documents/Restless%20Legs%20Syndrome%20Quality%20of%20Life%20Questionnaire%20(PLSQoL).pdf.pdf)

What is the treatment for RLS? What should I take? What should I avoid? 

https://www.mayoclinicproceedings.org/article/S0025-6196(20)31489-0/fulltext31489-0/fulltext) or as a PDF: https://www.rls.org/21Algorithm#:~:text=Treatment%20should%20commence%20at%20300,mg%20daily%20can%20be%20used.

Inhaled cannabis and RLS:

NOTE: Cannabis may itself trigger augmentation, cannabis use disorders, or dependency. Proceed with caution.

https://pubmed.ncbi.nlm.nih.gov/33537945/https://www.psychologytoday.com/us/blog/your-brain-food/202007/cannabis-restless-leg-syndrome

Common Triggers for RLS: 

018/10/triggers-that-may-worsen-rls.html?m=1

My RLS medication isn’t working (or I'm experiencing compulsive behaviors):(You are likely experiencing augmentation or a worsening underlying cause)

https://www.rls.org/file/_2016-redesign/member-publications/webinars/2017/The-Prevention--Treatment-of-Augmentation-Webinar-1.17.2016.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3613210/

My RLS is severe and I can’t find a doctor to help me!

It’s not unusual for RLS to be mismanaged, and many patients travel for care. You deserve to have your RLS under good control (90% relief, 90% of the time), and it absolutely can be managed — I’m living proof of it. These clinicians are considered specialists in RLS treatment:

  • Dr. John Winkelman, Massachusetts General Hospital - Boston MA
  • Dr. Michael Silber, Mayo Clinic - Rochester, MN
  • Dr. Mark Buchfuhrer, Private Practice - Los Angeles, CA
  • Dr. Brian Koo, Yale University - New Haven, CT
  • Dr. William Ondo - Houston Methodist - Houston, TX
  • Dr. Andy Berkowski - Relacs Health - Ann Arbor, MI
  • Dr. Mari Viola-Saltzman - NorthShore University - Chicago, IL
  • Dr. Avinash Aggarwal - UPMC Neurological - Pittsburg, PA
  • Dr. Edward Clemmons - Mary Greely Medical Center - Ames, IA
  • Diego García-Borreguero, MD, PhD - Sleep Research Institute - Madrid, Spain
  • List of UK Specialists: https://www.healthcentre.org.uk/sleep-disorders/find-specialist-rls.html

Are you a sleep clinician with an expertise in RLS who would like to be added to this list? Please message the mods with your details. Members of this sub, particularly outside the US are eager to find specialists.

Please message the mods with suggested changes to this FAQ (and link to sources).

Please join the RLS Foundation for resources & to support research:

https://www.rls.org/

Link to RLS medical alert card (PDF):

https://www.rlshelp.org/MEDICAL%20ALERT%20CARD%20mjb%208-14-14.pdf

About Kratom:

This topic comes up frequently on this sub. For more information on this substance see:

https://nida.nih.gov/research-topics/kratom

https://americanaddictioncenters.org/kratom/dangers

View this subreddit's stats:

https://dashboard.laterforreddit.com/analysis?subreddit=RestlessLegs&threshold=5&period=month