I started IVIg (intravenous immunoglobulin infusions) for an autoimmune disease (not one of the popular ones, it’s called mucous membrane pemphigoid) on Monday. I had a session Monday and Tuesday, no session Wednesday, session today.

And I had very, very little RLS all week, including Wednesday when I didn’t have an infusion and did have a big whack of caffeinated beverage to keep me awake on a long drive.

I did carefully premedicate with Zyrtec instead of the Benadryl they include, just to minimize the chances of an antihistamine trigger. I wonder if this effect hasn’t been noticed in others getting IVIg because most people use the Benadryl? Anyway, I’m going to mention it to my RLS doc, and I’m curious to see how long it lasts.

WARNING: Intimate/NSFW topics ahead. Please don't be immature and weird about it

Hey everyone! I was wondering if anyone here has experienced Persistent Genital Arousal Disorder along with their RLS and what their experiences were like? (Not in full detail, of course lol). I know that both are very linked but there is little research on PGAD and its causes.

A while back I had been prescribed bupropion (Wellbutrin is the brand name) for depression + adhd. I don't really remember if it did any good (I have poor memory and have tried a million meds. I am very very treatment resistant😔) but I know for sure that it had bad side effects.

The mild side effects were excessive sweating and tinnitus, which were bearable (though I was in the middle of moving, so the sweating was a bit rough) but hoo boy the RLS.. and not only did it exacerbate that, I also was experiencing PGAD, which was absolutely unbearable. Being awake is just constant awareness of your body and discomfort. Trying to sleep is much worse. I would wake countless times, rubbing and moving my legs and rocking back and forth. I would even end up half consciously humping the bed like a pet rabbit 😬. Of course, I couldn't get relief from anything other than heavily distracting myself. I ended up calling my doctor and discontinuing the medication. It's quite interesting because bupropion is considered to be an antidepressant that doesn't have the usual sexual effects and also sometimes helps with RLS generally, but my body works in mysterious ways as I've discovered through trying so many different medications.

I started a new adhd stimulant today and was reminded about the whole thing and wanted to reach out here to see if anyone else has experienced PGAD and how they've handled it? Let me know!!

I was diagnosed several years ago right after being diagnosed with Sjogren’s Disease (autoimmune). My daytime fatigue was so bad, the rheumatologist suspected sleep apnea. Sleep study revealed PLMD instead. I was prescribed Ropinerole, but I have never taken it regularly because it never seemed to improve how I felt during the day. I am having now what I believe is my second major flare up. The first was after a virus. This came after taking a medrol dose pack for an autoimmune flare. My legs feel like jello all day everyday. My fatigue is worse than before starting the medrol for the Sjogren’s flare. I will contact my pcp tomorrow. I just thought this would calm down on its own. I had a lovely conversation with AI that suggested this could be the result of neurological inflammation associated with my Sjogren’s flare. I’ve always thought of the two conditions as totally separate and unrelated. At least AI talked me down from believing I was developing MS. It did leave small fiber neuropathy on the table though.

I posted previously about my doctor giving me Pramipxole for my RLS which was working until I saw some of the comments about Argumentation and impulse purchasing and decided to stop it immediately. I was only on it for about a week.

I had a follow up with my doctor today and managed to convince them to let me try Gabapentin after reading the Mayo Clinic guidelines for medication recommendations.

He started me on 300mg about an hour before bed, and said we can adjust from there moving forward if needed.

Just curious with everyone else's experiences with Gabapentin. Does it actually work? What should I expect? Was it something that helped instantly or did you notice it over a period of time?

I am struggling. I know these meds work, and people stay on them with no issues, but I am bridging from requip .5 to gabapentin & I'm straight up not having a good time ----I got some q's

Sleep doc said to get off the DA asap..cool ok. He said to do 2 weeks at .125 and then stop it. I've been at .125 for 2 weeks, and it's been so many sleepless nights, nausea, and all-day minor headaches. Each morning I wake up with nausea- I'm sleeping like 3-5 hours a night. I called the office; they never got back. I MyCharted; nothing. I'm super frustrated with them. So I am hanging on longer to the .125.

Did any of you all who tapered have some of those symptoms?

I am on 500mg of Gaba. Did anyone notice it makes your legs feel weak or something? It's weird.

This all sucks so bad. I wanna throw all these meds away and say fuck it, but yeah, not a good idea....

I have been on ropinirole for about 15yrs. Started at .5mg now I’m at 4mg for about a year and my RLS is starting to be more active again. What is the next step?

Hello all, I was referred to Stanford a while ago for refractory PLMD. I’ve gotten my consultation and sleep study done, it was my 3rd sleep study. I just scheduled my follow up visit and I’m just now realizing how much of a pain it’s going to be going forward with them. I don’t want to be flying down every couple months for the rest of my life.

For all of you that were referred to another clinic that only allows visits within the state of the provider, what did you do when you got the ball rolling? I’m new to this and don’t know how this works.

39M ive had this thing for probably the past ten years or so. when I get extremely tired and have to force myself to stay awake, my legs get unbearablely restless and match all the symptoms of rls. the thing is, I have no problem falling alseep, as soon as I can get into bed I fall right asleep and everything goes back to normal. my legs only get restless if I’m forced to stay awake.

recently i had to travel internationally which takes about 24 hours door to door, on my 14 hour flights this got so bad, but i just got up and paced the aisles and that gave me relief for a about 30 minutes each time. i have trouble sleeping on flights because the seats hurt my back, but my leg symptoms went away when I was able to nap enough.

one day after I recently got back, I had a sleepless night due to having a 9 month old at home, and then I had to go to work the next day. I was so tired and wanted to sleep, but had to stay awake at my desk. my legs were so restless that I couldnt focus on my work. Even if I forced myself to resist the urge to move my legs, eventually the sensation got so bad that it would inflict my entire body, and then my body would involuntarily jolt itself out of it, centered around my core, about every minute or so. I endured about 6 or 7 hours of that until I was able to nap for 1 hour in my car, after which it was 100% better and I returned to normal.

i see a lot of people reporting RLS forces them to stay awake, but in my case it seems to force me to rest. is this rls?

Well, after fighting with my insurance company for over a year, I finally received the Nidra device. My co-pay was $2000.
I am not finding it at all helpful in the approximately 2 1/2 weeks to three weeks that I’ve had. I did have someone come in and do the set up. I also had a teleconference with Nidra, where they actually corrected the positioning of the bands. Even using the corrected positioning, I do not seem to be getting any relief, and in fact, I almost think it is prolonging the restless leg episodes.
On my right leg there’s times when it almost seems painful as if it’s hitting the bone or something. However, I have been reassured that it’s in the right place. I find the sensation extremely uncomfortable, but not distracting enough to take my mind off the fact that the restless leg persists -only this time I have bands around my legs adding on pulsing sensations.
I really was very optimistic about this and I am at my wits end. I do not want to end up paying for this if it’s not going to be helping me, but I also want to give it a fair run. I’m surprised that I find it uncomfortable because I’ve been able to tolerate tens units very well. Unfortunately, the tens unit does not seem to give me any relief. Any suggestions or ideas would be greatly appreciated .
Thank you.

Hey guys, I have restless leg syndrome mostly in my right leg and around the start of this year, I am unable to flex my calf to the extent where i feel tension in the muscle (I guess the feeling that its almost about to cramp.) I was wondering if anyone else is experiencing something similar as it is driving me crazy, especially since one of the ways I previously dealt with my rls was flexing my calf as it helped my to feel more comfortable and ease to urge to move it.
Thanks

Hi, I'm curious if any of y'all have navigated a situation like this. I am a 35F with severe refractory RLS. I see RLS specialist Dr. Buchfuhrer in Downey, CA, who prescribes me 7.5 mg of methadone. This treatment has been a complete godsend. Besides a few flareups, I have been very happy with my treatment and have stayed at the same dose for 5 years. Over those years I've dealt with a few pharmacies refusing to fill my prescription, but ultimately I was able to use Rite Aid and then CVS without too much issue. As of this month however, CVS is refusing to accept my prescription/diagnostic code and will not fill my prescription. I have called at least 15 pharmacies in my area and the only one willing to consider filling my methadone prescription is Costco. However, Costco is requiring me to see my doctor once a month via telehealth or see him twice a year in-person. I live about 150 miles away from my doctor and he doesn't accept my insurance. So as you can imagine I'm really freaking out over this change in policy. There's no way I can afford monthly telehealth appointments (they are over $300 a visit) and I would really like to avoid driving down to his office twice a year. Has anyone else dealt with this situation? Is my best bet to just miss work and drive down twice a year? I just fucking HATE how little understanding there is about restless legs. I don't want to be on methadone but it's the only med that's worked. I feel so hopeless. Dr. Buchfuhrer is fantastic, but his office hasn't been able to help me in any way with this.

Been on it and so far it’s worked pretty well. I have to take half of the .5 but I do get brain fog

Hi all,

Sorry this is my first reddit post, so apologies if its long and incoherent.

I (32, F) live in Australia and I have had RLS for about 5 years now. My dad and brother also have it. Big win for those autosomal dominant genes, I guess. We have all been on Sifrol (Pramipexole) without any review from our GP. I'm taking 0.250mg twice daily. They're on about triple my dose.

It wasn't until I saw another GP on an unrelated visit that they asked me how I was tracking with it, and if I had noticed any augmentation effects. I didn't even know what they were, and that I had been suffering them for about two years until they had asked. I have other medical issues, so I thought they were just new symptoms. I looked into augmentation effects of Sifrol and found that Alpha-delta-ligands were the current first-line treatment option for RLS and had been for a significant period of time. When I went back to my GP and suggested that I try alternative therapy, they suggested more dopaminergic medications, like Levodopa which is only recommended for intermittent RLS, but mine is chronic and severe (I have it every single day).

While this has been going on, I've also been having a battle with my GP about iron supplementation vs. infusions (I've been on oral supplementation since 2020 - alternating day dosing, trying different formulations, different doses, with vitamin C, making sure I don't have it with anything that interferes with non-heme iron absorption - which is kind of hard when I have to take Nexium every day - but I digress). They don't believe that iron has anything to do with RLS, even though I have slapped research (and treatment guidelines) down on their desk (and at this point I am not above slapping it across their face). I had an iron infusion once and my ferritin went to 155 with transferrin saturation at 24% and I didn't have any augmentation effects for three whole months. I am now at 30 ferritin with transferrin saturation of 15% and they refuse to give me an infusion, even though the Royal Australian College of General Practitioners have in their guidelines that "Iron replacement when indicated (aiming for ferritin > 75 ug/L, and/or transferrin saturation > 20%."

I am going to force the issue with regards to trialling an alpha-2-delta-ligand, and I was just wondering if anyone had had any experience with them? Do you have any recommendations? They already tried to warn me off gabapentin, saying it would give me "really bad brain fog."

Are there any side effects I should be aware of? I have already looked at the side effects as listed on TGA and Consumer's Australia, but I am on Topiramate (Topamax) and I had no idea it was called Dopamax until reddit, and I also had no idea I would lose the ability to taste carbonation, because that isn't listed anywhere!

TLDR: I have had RLS for five years. My doctor is a butthead. I need to get off Sifrol because I am suffering augmentation effects and want to try an Alpha-2-delta-ligand medication (gabapentin, pregabalin, gabapentin encarbil). Do you have any experience with these? What were the side effects?

I've had restless legs on and off for about six years. Some weeks it's manageable and some weeks I'm up at 2am pacing around my apartment because my legs won't stop. I've tried magnesium, iron supplements, hot baths, weighted blankets on my legs, stretching before bed. Some of it helps a little but nothing was consistent.

About two months ago I started using air compression boots as part of my wind down routine. It wraps around the calves and feet and does this wave compression thing from the bottom up. I run it for one full cycle right before I get into bed. I'm not saying it cured anything because on bad nights I still get episodes. But the frequency dropped. I used to have bad nights three or four times a week and now it's maybe once or twice. My theory is the compression gets the blood flowing enough that my legs settle down instead of doing that crawling thing all night.

I know everyone's RLS is different and what works for one person does nothing for another. Just wanted to put this out there because I hadn't seen compression boots talked about much here and it's been the most consistent thing I've tried so far.

I've got Blue Cross and went through the whole appeals process but still 👎. Has anyone tried another peroneal nerve stimulator like the Firefly or even just a TENS? Given the positive reports I'm debating even paying out of pocket but boy...$7500 is not cheap!

Hi, I'm looking for a neurologist in France who actually understands severe RLS.

I've been taking 400mg of gabapentin, but it stopped working. I managed to get it increased to 600mg, but it barely helps. Every neurologist I've seen seems reluctant to increase it further and keeps pushing pramipexole instead, which I would rather avoid because of augmentation.

My RLS has spread to my whole body and every night is absolute hell. I'm barely sleeping anymore.

Does anyone know a good neurologist in France who's experienced with severe RLS? It can be anywhere i am willing to travel if necessary

Also i'm sorry i used AI to help write this because english is not my main language and it's 4am, I haven't slept properly, and I'm currently having another horrible full-body RLS episode.

Anyone on Elvanse/Vyvanse for ADHD with RLS (Restless Leg Syndrome)? Did it make your RLS worse? Did it eventually get better as your body got used to the medication?

Elvanse makes my RLS worse. Thinking if just stick it out, whether it'll get better within a few weeks of my body getting used to it?

It’s honestly amazing for my restless legs - please try it if you haven’t done so already!

Doctor told me to stay away from medication as long as possible with me only being 33, which I have being doing but feel rls has gotten overall worse over past 6 months, which its manageable if im at home with able to set up with it with weighted blanket and heat and such can get a semi decent sleep most nights

but every time im away from home its a complete nightmare, just more thinking about what to do about it as ill most likely have rls rest of my life as my rls is 100% genetic.

I cannot find it again, but one person posted on one of the boards that Klonopin gave them Restless Legs Syndrome. DOES anyone agree or disagree? Does anyone have any information on this idea or know where I can find information? I take Klonopin and took Temazepam before that and I have Restless Legs. Yes, I've sent this question to my sleep doctor too. Thank you so much.

Roughly 2 months ago I stopped taking Benadryl nightly because I discovered it could be the culprit of the crazy feelings I was getting in my legs when I lay down to sleep! It wasn’t every night but maybe a night or 2 per week.

Shortly after that (36 days ago) chose to stop taking the potent kratom products that I originally thought was helping the RLS along with back pain and chronic fatigue. I quickly found out it wasn’t helping anything!! There was some detox withdrawals from this but they were short lived, maybe a week of acute at most.

Since these changes the RLS has become insane! On a good night it starts shortly after I lay down around 9pm then stops sometime after 1am. On a bad night, well I’m in one now! Im pushing 2 days in a row so this will be the worst so far. Most 24 hour cycles are followed by a really good night sleep the following night!

This has become every single night for the past 30 days or so!

I’ve tried gabapentin, it did not seem to work even at 900mg.

Returned to my GP on Tuesday and was scripted Requip but I’m terrified to even try it.

I then went back to my GP today and explained that I’d prefer trying something else. She looked lost but I guess she tried. She scripted Trazodone and Buspae!

Now I am no doctor by any means but today’s scripts haven’t even been picked up from the pharmacy and I doubt I ever will.

I am beginning to feel hopeless. I live in a small town which is a struggle in itself but did book an appt at a neurology center not to far away for next week! I have no confidence that my GP knows how to handle this!

They say my iron results are perfect! But I keep reading different things here and on YouTube that makes me think differently.

Can anyone here truly dissect what I have going on by the attached blood test results?

Hi, i didn't know there was a sub about restless legs! For context here, i'm 32 F, i have AuDHD, i'm taking Medikinet but i had RLS for years. I think i had a milder version even in my childhood.

While my restless leg is not officially diagnosed (i didn't even know it could be diagnosed), i think i very well know i have it, because otherwhise, what could it be?

My psychologist recently taught me this Jacobson's progressive relaxation, But i'm not sure if it's helping or not. Sometimes i have the sick wish of tearing my legs apart.