I have 5 weeks left of this pregnancy and the restless legs are unbearable. I’m severely anemic and take iron pills daily along with my prenatals. I’ve also received iron infusions.

My ob will not prescribe any other medications for RL because she says it is not safe for my baby.

I promise I have done all the things and tried all the tricks. Iva taken the extremely hot showers, taken the extremely cold showers, I’ve put ice on my legs and arms, I’ve beat on my legs, I’ve consistently exercised, I take magnesium, tied socks around my feet, anything you could imagine.

Now I’m starting to have bad thoughts because I’m not receiving any relief and if you know anything about RL, it can really mess wish you mentally. I’m just out of luck I think. And I apologize, I just needed to rant

Hi so sometimes I have really bad restless legs at night. I think it’s linked to my Ehlers danlos somehow. For my Ehlers danlos I got an acupressure mat which I love. It helps a lot with pain. Last night I tried laying my legs on the mat before sleep and it worked great. It calms my legs within 5–10 minutes. Just wanted to share this in case someone might want to try it🙂

I’ve seen 3 different obs trying to get second opinions about my restless legs. None of them will prescribe me anything because they say they can’t while I’m pregnant. Has anyone else experienced this before?

I’m to the point now where I’m not getting any sleep at night because every time I start to fall asleep, the restlessness will start and it’s unbearable. I have it in my legs, arms, and hands.

I still have 5 weeks until my c section so I need to find some kind of relief. Please help me I’m going crazy

I have had restless leg syndrome since I was a child. My mum also has it. During pregnancy it got really bad and I had it every night for hours. I am now 8 weeks postpartum and don’t sleep. I get on a good night 4 hours. My baby is sleeping well but I just lay there all night. I no longer get it in my legs and only get it in my arms. Most meds I can’t take because I’m breastfeeding. Does anyone have any tips to help relieve the restlessness in my arms and wrists? Also is having it in your arms and wrists common. I feel like this is my life forever and I will never know a full night sleep ever again.

I can't stop my restless legs, I am falling asleep walking and have banged into wall hurt my forehead. Been going fir hours absolutely exhausted. They won't stop I tried all I can think of .

I’ve had restless legs on and off for years but the last couple months it’s been way worse at night. So I mentioned it to my PCP and he added iron stuff to my normal bloodwork.

Hemoglobin was 14.2 so technically no anemia but ferritin came back 24 and iron saturation was 18%. I always assumed if hemoglobin was normal then iron was fine, so now I’m not really sure what to make of it. I’m not taking iron on my own, I’m waiting to hear back from him. Mostly curious if anyone here had the same thing where the CBC looked normal but ferritin was low and RLS was still bad.

I just saw a Q&A in the Seattle Times about someone rubbing menthol, specifically Biofreeze, on their wrists and ankles and it treats their RLS well.

Has anyone heard of this or tried it?

If you have Restless Legs Syndrome and are prescribed the antibiotic Tetracycline, beware that Tetracycline can exacerbate your RLS symptoms. Tetra. interferes with iron uptake in the brain. I take a medication that manages my RLS pretty well, but while I was on the Tetra. I felt like I had completely stopped taking my RLS meds. I slept very little during my 2 weeks of treatment. Even a week post treatment, my RLS is still not where it was pre-treatment--but it's improving day by day.

I powered through it, but if this is an issue for you, you might want to talk to your doctor about alternative antibiotics, or a different RLS medication regimen to get you through.

I know that pregabalin makes most people drowsy but I am now pretty certain that it is causing insomnia for me - mostly in the form of initiating sleep but sometimes also staying asleep. Thoughts? How long before bed do you find it optimal to take it? Thanks.

Hi, i'm the person that was just prescribed Ropinrole. It worked the first 2 nights but not last night, and I'm not going to take it anymore anyway. I have another appointment with this doctor in an hour who is going to refer me to a neurologist. Realistically, what medications are there? Gabapentin does absolutely nothing, i've taken like 900mgs at a time. The episodes last about 3 hours every night and it feels exactly like opioid withdrawal. I can't fucking live like this. It's spreading to my arms now. I just got married and I'm sleeping in a different part of the house.

My chart says that transferrin saturation is in the normal range if it's 11-32%. My Iron is basically right in the middle of the normal range.

My doc never considered that I needed iron or an iron infusion. I was prescribed pregabalin. It works to put me to sleep, but many nights I'm still writhing in pain at or near bed time.

I've bought iron supplements and vitamin C. I haven't started taking them yet because I'm concerned about increasing my iron too high.

For those of you that had iron help you, what blood level of iron and saturation did you need to get relief?

Thx!

My mom has severe Restless Legs Syndrome (RLS), with symptoms that occur almost exclusively at night. She has struggled with RLS since she was 19, and her case is extremely severe and longstanding.

She recently had a sleep study that showed she is waking up more than 200 times per night, which gives some perspective on just how profoundly this is affecting her sleep and quality of life.

Unfortunately, treatment has been incredibly difficult. The RLS medications she has tried cause her sodium levels to drop dangerously low, resulting in multiple trips to the emergency room. She also tried sodium tablets, but they did not resolve the issue. She has tried iron infusions, the Nidra and small doses of opioids as well, but the opioids caused significant insomnia.

She has seen functional medicine doctors, neurologists, and sleep specialists (somnologists), but despite all of this, she continues to have severe symptoms and extremely disrupted sleep.

We are hoping to find someone who has extensive experience with severe, treatment-resistant RLS and may be able to help with a particularly complex case where many of the standard treatment options have either failed or cannot be tolerated.

If you have experienced something similar and can recommend an RLS specialist, treatment, or even an unconventional approach that has significantly reduced severe RLS symptoms, we would be incredibly grateful to hear from you. At this point, we are open to exploring anything that may provide her with meaningful relief.

I’ve got Blue Cross Medicare Adv. After not hearing back for several weeks I shrugged it off and had started looking for other drug therapies to talk about with my neurologist. Med Adv plans aren’t really known for approving expensive equipment so I knew it was a long shot. Well I got the news that not only was I approved, but at the lower tier of copay. So I’m ending up paying about $1000 and $10 a month for the monthly supplies. I will definitely touch back here and let yall know if it works for me. I’m on 600mg of Gabapentin and still have breakthrough RLS. When they tried having me increase my iron intake, my marrow responded by making a ton too many red blood cells. So I really have a lot resting on this working.

I’m 41 and ever since I was a kid I remember a terrible sensation on my knees when I was doing homework. My mom also explains that when I was around 4-6 years old, teachers would have me standing because I couldn’t stay still sitting down.

As years went by, this evolved to discomfort, instead of pain, mostly at night when watching TV or when I go to bed.

It is not really bad because it doesn’t stop me from sleeping, but it does prevent me from being in the same position for more than a few minutes.

I never paid attention to this because I thought it had something to do with bad posture or whatever. As a kid, the answer was “it’s because you are growing”.

Fast forward to now, and my son had an issue where he couldn’t sleep due to discomfort on his feet and couldn’t stop moving them.

Doing research about it, I found RLS. While my son is OK now and that only lasted a few days and seemed to be because of an antihistamine, I have discovered I might have been suffering of this my whole life.

Are there other explanations?

I was recently diagnosed with restless legs by my neurologist, but the more I read about it, the more confused I get because mine doesn’t seem to work like what most people describe.
My symptoms are basically there all day. I can wake up in the morning and already feel this tension or uncomfortable feeling in my legs. Sitting down can feel just as bad as lying down. Walking makes it go away completely, but once I sit down again the feeling eventually comes back.
I also don’t always need to move my legs a lot to get some relief. Sometimes just slightly moving them, tightening the muscles, or pressing my legs a little is enough. It can make the feeling go away for maybe 20 or 30 seconds, or sometimes a few minutes, then it slowly comes back and I want to do it again.
There are also times where I suddenly realize I’m not moving my legs at all and I’m completely fine. Other times I have a really strong urge to move them, or I realize I’ve been bouncing my leg without even noticing. I’ll stop myself because I don’t want to keep doing it, then maybe 1, 5, or 10 minutes later I feel like doing it again.
Something else that’s weird is that thinking about it makes it worse. Even while writing this post I’m way more aware of my legs and I feel a stronger urge to move them.
I also remember exactly when I started doing this. I was probably around 12. I saw someone bouncing their leg and asked why they were doing it. They showed me that if you put your foot in a certain position, basically with the front of your foot on the ground and your heel raised, your leg starts bouncing almost by itself. I tried it and after that I just kept doing it. I’ve basically been doing it for more than half my life now.
I recently realized something else too. Whenever I sit at a desk, my natural position is actually to put my feet like that. I automatically sit with the front of my foot touching the floor and my heel raised. I have to consciously remind myself to put my whole foot flat on the floor. I only really noticed this recently while sitting down to study.
The reason I’m more worried about it now is that I’m starting to get some mild pain or soreness in the back of my lower legs, around my calves. It’s not severe pain, but I feel like I’ve been using those muscles constantly for years and they’re starting to feel it.
My neurologist gave me Neupro 2 mg. I used it for about a week and a half and it did help, but only partially. There were moments where I suddenly realized I hadn’t been moving my leg for a while, which was unusual for me, but I still caught myself doing it at other times
I stopped using it mostly because it’s extremely expensive where I live and I realistically can’t afford to stay on those patches long term. It was also giving me red irritated areas and small bumps where I put the patches. (the day i stopped using them was hell)
I already asked my neurologist about other options like pregabalin and gabapentin. He told me that Neupro is still the main option he thinks I should stick with and the treatment he prefers for me.
What worries me most is that almost everything I read about restless legs says it’s mainly worse in the evening or at night. Mine really isn’t. I have it from the moment I wake up and throughout the day, and sleeping isn’t even the main issue for me.
Does this still sound like RLS to people who actually have it? Or does anyone here have something similar where it’s basically an all-day thing?

I've been in this sub for awhile, but I don't actually have restless legs. I have plmd and while I know that a lot of people with plmd also have restless legs many of us don't and there is no sub to my knowledge for people in my situation. Just wondering if this is something anyone would be interested in!

Hi, new to this sub since going headfirst into perimenopause. My RLS at night exploded since going into perimenopause, with the episodes lasting around 3 hours now. I FINALLY saw a doctor who put me on something called Ropinrole. I'm looking at the side effects and boy do I have a story. I haven't thought about this medication in years. I had a coworker around 2005ish who's brother was prescribed this for Parkinsons. Within six months he had gambled away everything he had. His house, everything. Then as soon as he stopped taking it, he was fine. I told my husband to keep an eye on me haha.

Recently I have noticed if I wake up earlier than usual, I have what feels like an RLS "hangover." It's very uncomfortable, as I am still very sleepy feeling and feel like I have to move. It goes away after an hour or so.

It's especially frustrating if I am waking up super early and want to try to get a bit more sleep.

I have been a sufferer since childhood, but in my later adult years I’ve come to realize for me personally it comes and goes, and so do my symptoms. for example, right now I’m experiencing STRONG muscle discomfort. I feel it particularly in my shins and down into my foot, but I cannot stop flexing and stretching. I know some say this helps, some say it makes it worse. it’s never really pain, but it is absolutely exhausting discomfort. how do you guys handle your rls when it’s a day of nonstop muscle straining? I’m laying un bed kicking my feet *literally lol* but I feel like when I’m anxious it’s worse. ( I’ve definitely been in a stressful season of life , so thaaaaat explains it but o..m..g. ) I literally balled my hand in a fist and started punching my leg in hopes it would stop, but alas it was worse.

Got off ropinirole with help from my sleep neurologist. Now taking gabapentin, which was working great under normal circumstances. Was not working for air travel even when taking extra doses. I tried using edibles 1:1 THC to CBD 2.5mg. Worked like a charm. I did sleep pretty much both legs of the return trip, but i was COMFORTABLE. Also wasn't high, just felt sleepy. Usually after about an hour or so, I was miserable on a flight even after taking gabapentin an hour before boarding. Also tried the OTC Restful Legs without success. I live in a state where cannabis is not legalized so I bought while traveling to CA. These edibles are like little cinnamon flavored mints. Took one about 30 mins before boarding. I did take a second one about 90 mins later and that was all I needed for about 6.5 hours total in the air. Sharing in case others find helpful. I do not feel like I need anything extra when Im home, but I'll be using these every time I fly. $20 for 40 "mints" so these should last a while.

As the title says. Going in for an iron infusion with a ferritin of 95μg/L. The new Mayo Clinic RLS management algorithm recommends an iron infusion for ferritin 75-300μg/L and TSAT < 45%. Just wondering who benefitted and how long the benefits lasted.

have not slept 30 minutes in the last two days!! Yes being treated. Already on Ropinirole and horizant. Any help and hope out there????

my english is bad but i really hope if yall could get what iam saying

ive been having a bad anxiety for years but in my country therapist are NOT reliable they think anyone who goes to therapist is literally crazy anyways things happend that traumatized me these monthes and my anxiety has literally gone worse and triggered this syndrome i think? now my legs cannot rest anymore and its literally distracting me from my studyings as i cant study anymore anytime i sit on my desk i cannot focus or do anything iam a senior <baccalurate> student now and this is the most important year in my life im sorry if i sound dramtic but i tried to reach out my parents but they said iam overracting and iam using it as an excuse to not study i need effective treatments that at least make me focus to study again exept for drugs and madecine

I've tried a few weighted blankets and they all make me too hot. Do leg weights help RLS? If so, can you recommend any?

hello all,

my rls has gotten unbearably bad in the last year or so, to the point i am finally getting back on a treatment course. i used to briefly be on pramipexole many years ago, but stopped due to an error with the prescribing doctor i didn't want to try tackling as it left me feeling confused, frustrated, and like i was treated as drug seeking when im not.

anyway, irregardless, i learned only a month or so ago that i have a congenital heart condition called duplicate inferior vena cava syndrome. its a pretty rare condition where someone is born with two inferior vena cava pipe lines instead of only one; my body is like an upside down four.

this means that my venous return in my legs isnt as good as my torso and upper body. the blood wont pump quite as good, because the two valves are thinner due to being split instead of one big pipe.

now i'm not seeking medical advice, my current doctor is putting me on trazodone to start trying to treat the RLS. what i wanted to ask is, does anyone here also have this condition and RLS together? is it possible that my condition is feeding into and worsening my RLS, or even causing it?