r/RestlessLegs

Curious, but unsure as I haven’t heard many people using it or maybe I have just missed it? Does it help?

Hey guy I'm about to get prescribed Ropinirole (Requip) its for parkinsons and restless legs syndrome and its a Dopamine Agonist, I was curious if it helps at all and if it helps opioid withdrawal related restless leg syndrome?

Thanks for anyone that answers! 🙏🏻

I've had RLS since forever but it's gotten worse lately. My right leg get affected. Usually sensations don't continue in the morning but this time, it's happening in the morning. Not just leg but right arm too. I take magnesium glycinate it doesn't work. Stretching provides temporary relief only. I just want to sleep 😭 please help. What do I do.

It's soooo bad, for a year I can't remember the last time I went to bed without crippling pain and feeling so uncomfortable to the point I would cry and hit myself.
I'm pretty sure I developed insomnia too.
No one believes me Idk what to do I've taken a shit ton of magnesium, melatonin.
Please guys what do I do???!???? Help me
Also, DOES IT EVER GO AWAY, will I go to sleep like a normal human being?

Hello. I’m 52/F and have had RLS since I was 10. My grandmother had it also. For most of my life just making sure I got enough sleep was enough to keep it at bay but had horrible times with it during both pregnancies.

As I’ve gotten older, I’ve started having symptoms more and more. I finally asked my doctor for meds to help. He put me on gabapentin but it quit working pretty quickly. I stayed on it due to nerve pains caused by arthritis and I’m taking ropinerole for the RLS.

I was diagnosed with PCOS about 10 years ago and the insulin resistance issues caused Type 2 Diabetes so my doctor put me on Mounjaro injections, which is a GLP-1 drug.

I’ve been doing fine on it but the last 6 months or more it has really messed me up in regards to sleep and RLS issues for the first 3-4 nights after the injection. It’s a weekly shot so that’s a lot of days! I’ve been trying to spread the shots out but that’s not helping the weight issues!

Just curious if anyone else has had this happen to them while taking a GLP-1 and if you know why or how to stop it.

Hi everyone. I had my first visit with a neurologist listed by the RLS foundation. It was a video visit and it went very well. It felt good to talk to someone who understands this terrible disease.

I’ve been on oxycodone IR 2.5mg four times a day for quite some time. It kind of works but wears off rather quickly. I have symptoms 24/7.

He think Methadone will be a good fit for me. Since it was a video visit, he can’t prescribe my meds yet. His office squeezed me in tomorrow. It’s about a 3 hour drive from my house but worth it.

If we choose to go the Methadone route, I’m curious about the availability of it at my pharmacy. I use CVS for my prescriptions. Do any of the others taking methadone also use CVS? Do they give you a difficult time when you first had the prescription sent there?

I haven’t called and asked them yet. I don’t want them to know my business until they have to. I already feel judged by them for the oxycodone so I thought I would ask here first for others experience.

I have an appointment in July to see a neurologist so, as of right now, I am on no medication. It is brutal. Often, if not usually, the spasms and constant need to move start as early as 10:00 pm when I am actually just settling down (or trying to) for the night. Then, it starts and I literally count the hours until I can get up at 5:00 and take my dogs out and move…the night is so long and so brutal and painful.. I just can’t cope.

Apologies. I guess this is just a venting post. I have read so many excellent recommendations from you all and feel prepared when I do see the neurologist but I invite anyone to relay their similar experience here with an absolute dread of the night and how seven hours can see a lifetime.

Much fondness to all.

Having read about iron and restless legs for a long time, it still doesn’t make any sense. I am desperate to feel better. Yes, I have asked similar questions on this sub before, but I still cannot find the right answers.

Iron treatment for RLS (and PLMD) is so confusing. Synthetic iron tablets cause nausea and stomach pain and needs vitamin C (like a glass of orange juice) and avoiding dairy, and a long list of other iron blockers for 2 hours before and after taking them. Heme (haem) iron like beef spleen is apparently easier to absorb and needs taking everyday for at least 90 days to make any difference to blood iron levels. Those with confirmed anaemia or very low ferritin (stored iron) levels may get an IV iron infusion to quickly correct the low blood iron levels.

But none of these treatments appear to raise low BRAIN iron levels. When the brain itself has insufficient iron, I know this affects dopamine, which probably causes restless legs and involuntary “kicks” during sleep and arousals many times an hour, leaving one extremely tired all the time! I am no expert on this subject and hoping others can help.

Lactoferrin is also recommended, but I don’t know whether it can “move” iron across the blood-brain barrier (BBB). To add to the confusion, there are different types of lactoferrin like, apto and holo, along with forms like liposomal liquid for easier absorption compared to capsules (yes I have researched this for a long time!).

I am doing all the right things and still stuck on square one. Please help.

It’s 3:37am. Been awake since 2am when I woke up due to RLS. Ugh I hate it. Nothing I do works! I don’t want to take meds for it like Pramipexole or Ropinirole as I’ve seen here people say it worsen symptoms after stopping taking them.

Sleep is so important to me. I am hopeless!

How can I distract myself from it? Is it even possible?

Just wanted to vent here…

What's the one thing you wish you could get back that RLS has taken from you? Not looking for symptom talk more like the life stuff. Sleep with your partner, sitting through a movie, not dreading bedtime whatever it is for you im curious.....

Has anyone tried the cheapy ones you can buy on amazon for RLS? The professional one - the Nidra TOMAC device - is SO expensive and I’m not at all sure if Kaiser here in california would ok them. I see they are like $7,500 - 8,000.

I am not diagnosed with RLS, and the only reason I'm hesitant to think I have it is because it is very rare to occur. It's usually one night every few months. Tonight, I have been having insane RLS, and haven't been able to fall asleep once. It's driving me crazy!

I've tried everything I could. I tried the sock method, I did as many exercises as I could, I did every stretch that I could find, I've taken a hot bath, and none of it has even remotely helped.

I'm also not able to go to the doctor for a month, but I do know I have anemia which I heard could be a cause of RLS.

I have no idea what to do and I just want to go to sleep. If anybody can provide me with tricks I can do from home, that would be wonderful.

I’ve had RLS for years and was on ropinirole for a long time before weaning off (augmentation concerns). Tried gabapentin but didn’t get great relief and had bad morning grogginess. Switched to pregabalin recently and it just hasn’t been effective yet.

For those of you on pregabalin — what dose ended up working for you, and how long before bed do you take it? Any other tips from your experience would be helpful.

It's just a symptom of my period at this point and it's so horrible. On one hand my cramps want me to curl up into a ball and on the other my legs want to stretch out. I've asked my friends and coworkers if this happens to them but none of them agreed.

Also currently dealing with restless legs someone kill me.

Don't know what flair to out this under, but my legs are getting worse. These last few nights have been Hell. Particularly in my knees. I cannot stop trying to stretch out my legs, making them pop and crack. And I when I try to stop, they spasm so much, my muscles involuntarily contract, and my legs curl up, or twitch badly.

I don't know what caused them to get worse, but my legs hurt during the day and I am losing sleep because I am sure my legs are still moving while I sleep. It is just getting really bad.

Edit: some background. I'm 30, and have been diagnosed for about 3 years give or take a year. The only medication I have taken starts with an R and caused fluid to build up in my legs. I cannot take anything with benadryl in it or it is ten times worse. And food actually helps. If I eat something with carbs or caffeine, it relaxes my legs most of the time.

I just needed to share that today I learned from my neurologist that the effects of my withdrawal (resulting in a sticky case of DAWS) are likely permanent at this point.

I've spent 6 yrs 3 months trying to undo that damage. By myself, I add, as nobody could/would help me. I tried. But it's so hard and exhausting when one of my main effects is that I cannot process language as well.

As a bibliophile and a well spoken adult, this has been devastating.

To learn that it's all for nothing, that I'm likely this way forever, has me questioning life.

I hate RLS. I hate sanctimonious doctors who are too proud to learn. I hate our medical system that allows doctors to be truly conscious with no repercussions. Today, I hate each breath. I hate each tear. Today's RLS is halfway up my spine.

A lifetime of this.

RLS was bad enough. But brain damage may be the straw that breaks this camel's back. Not gonna shoot myself, but I'm done trying.

I have nobody to share it with. I'm surrounded by those who want to find a bright side. There is no bright side.

Thanks for listening.

Damn. There is a reason I've believed hope was evil all these years. I let someone convince me otherwise, and BAM! Lesson learned.

I hear you, universe. Hope is not for me.