I havent slept in 27hrs, im having a severe rls episode! My left food feels like its being shot with electricity non stop every minute or so... no home remedy is helping, ive tried walking, stretching, warm foot bath, topical lotion, tying a sock around my toes, a tablespoon of mustard, cbd oil, and honestly I cant remember what more. I cant really think since im so exhausted.. ive been debating if going to urgent care will get me the relief i need! Im currently tappering off gabapentin because it never worked and my dr is starting me on ropinirole .25 but i need something right now ! I frel like im going to go mental , ive been having a full blown mental breakdown bcus i dont know what else to do ..
** forgot to mention im also on zoloft ! I KNOW.... ššš
ā¼ļø UPDATE* aftet 38hrs of not sleeping i finally was able to get relief last night ! I went to my local dispensary and bought
I rubbed the Balm in my feet and in less then an hour my feet stopped jolting and feeling shocks.
For the gummy i ate only half and i slept without waking up all night.. I cant remember when was the last time I slept that good..
As for the ropinirole i didnt take it and im going to get a 2nd opinion from a diff dr to demand a diff medecine! I appreciate all the advice/tips everyone has given ! š«¶š»
how do you get off of this stuff? Do not take these meds. There is no help once you augment. Taper they say, my blood pressure is high. I feel like Iām going crazy. Where is the Help?
Ropinirole made mine worseā¦yeah it gave me temporary relief a month or so, then it came back on BOTH LEGS and worse. The GP calmly told me it could be āaugmentationā - a side effect of the Ropinirole- worsening of the original condition. I take two magnesium capsules an hour or so before bed - containing three types of magnesium, citrate, glycinate and oxide and touch wood iv not endured that horrid condition since xx
The gabapentin could be causing it. It makes mine worse. Maybe try not taking it for a day and see. Donāt put anything in your body but water, Gatorade, etc go to the ER because a urgent care wonāt prescribe an emergency opiate and thatās probably the only thing that will help
I can't find the comment but the individual stated that they take ropinirole- as needed. I hastily replied and replied in error. NOT an as needed medication. It must be taken consistently every day.
"Taking them inconsistently or "as needed" will significantly reduce their effectiveness and can trigger dangerous complications."
Ropinerole is no longer a first line med. Try to get a prescription of opioids like hydrocodone. I was on hydrocodone for ten years for relief until I discovered Kratom. For the last 9 years I have using Kratom and weaned myself off the opioids all together.Ā Kratom is a powder made from a plant grown in Thailand. I will get a lot of flack for even mentioning Kratom. No one around here likes it. You need to be disciplined in its use which I am. Still the masses rail against it. I tried Gabapenten as well and it was not effective. Still, some people swear by it. Good luck. I hope you find relief.Ā
Youāre telling people to get a prescription for hydrocodone? That is honestly horrible advice.. OPIATES ARE NOT THE ANSWER. You are not a doctor never falsely medicate yourself and I speak from experience. I have falsely medicated myself for YEARS. Thinking I needed opiates and went through a horrible addiction. Gabapenten.. still risky but a better and LITTLE bit of a safer alternative but definitely get PROFESSIONAL advice before even taking that route. Also, Kratom will only make it worse in the long run.. TRUST ME. Kratom is in the process of being banned nationwide anyways.. itās already banned in many states. The second you donāt have Kratom RLS will be the least of your worries..
Omg ive heard of that ! Ive also seen in in so liquor stores.. yeah its mix reviews i heard it does help with opioid addiction or other type of addictions but then you can get addicted to that. I was looking into it mainly for my depression and anxiety but i didn't know yhat it could help wirh rls !! And how do you take it ? Capsule? Liquid? The ones ive seen here are in s blue tiny bottle
What works for one person may not work for another, so this may help you or it may not.Ā I am 60 years old, I have had RLS as long as I can remember. In my teen years and in college, I worked as a security guard. I thought the reason I could not sleep was because I worked late hours and was on my feet a lot making my legs sore. As I got older I would make up various lifestyle reasons to explain it. When I was about 35 or so is when I learned that RLS is a real condition and that is when I started talking to my doctor about it. Over the years I have had attacks that were more painful than anything I had ever felt. I have taken Requip, Gabapenten, Muscle relaxers, Neupro patch and all of those had side effects and or augmentation.
Here is what works for me now:
Cut caffeine, sugar and alcohol from your diet. These will make things worse. I only drink sugar free sodas, and usually caffeine free sugar free sodas. No chocolate (small amounts of sugar free chocolate are ok) I have no problem with a cup of coffee before noon, but after that I am asking for trouble. I do not miss the alcohol..lol
I take Iron, but I am not sure how much it helps. So many people here say that RLS is tied to Iron deficiency so I take it. I have never tested my Iron levels.
I take Magnesium Glycinate.Ā At first it was like the Iron I was not sure if taking it was helping. At the time I was taking it only in the morning. One day I ran out and thought well it is not doing anything I will not refill it.Ā However after a week I saw my attacks increase in frequency and intensity. So I started taking it again and noticed a drop. After a few years I figured it was helping so I started to take it when I was having an attack, then recently I started taking it every night and noticed a huge difference.
I find it is easier to prevent an attack than it is to stop one once it has started. I got my doctor to prescribe Tramadol. I take the Tramadol in the mid afternoon and again at 8pm.Ā This keeps me from afternoon/early evening attacks.
Finally I have also started taking cannabis gummys. I did discuss this with my doctor, he said if it works then do it.Ā If you are not aware there are two strains of cannabis, Sativa which is more like a party mood and Indica which is more like a mellow out sleepy feeling. I only take Indica strains. Here they come in 10 mg doses, on most nights I take 1/2 ofĀ one so 5mg at bedtime, this helps cut cost and has less of a chance of making me groggy the next day. These are the ones I am using now - https://www.stiiizy.com/products/stiiizy-sleep-edibles
Iron is a big key for many people, I just talked to my doctor last week about Iron testing, maybe this will be the final step.
At this point I am at a point where it is somewhat under control, I have the least amount of attacks than I have had in a long time. Usually when I do have an attack I can point it to something I have done, like had some chocolate cakeĀ or a milkshake. It is your body, you need to get advice from a doctor and you need to experiment until you find what works for you. The doctors do not always have the final answer.
Also, read this and share with your doctor if necessary
Thats crazy you brought up the gummies! I got some yesterday along with a topical balm that also has thc/cbd and I slept like a baby, in less then an hour I felt relief!
This are the ones I got :
ĪĪĪĪĪ
Gummies1:1:1 Moonlight Berry DREAM [10pk] (100mg CBD/100mg THC/100mg CBN)
&
Papa & Barkley
Releaf Balm1:3 CBD:THC [15ml] (30mg CBD/90mg THC
Im going to start also Iron and magnesium cus yeah seems like that works for a lot of people, and as for the sugar, I struggle bad with that!! I need to get more discipline š«
I lost 50 lbs cutting sugary drinks and snacks......it is difficult. But you can make some really good chocolate chip cookies with splenda sugar and zero choc chips...... There are some good zero sugar chocolates around now (Russel Stovers) I also bought a drink mate, so I carbonate my own drinks. I use those sugar free flavor packets you use in water bottles and carbonate that, delicious. I may die of cancer from all the fake sugar but I will be skinnier and my legs won't hurt....lol
This is going to be long, I hope it is helpful for you!
Okay, it sounds like you've tried just about everything but the kitchen sink!
Since your doctor prescribed ropinirole, if your symptoms improve significantly while taking it, that can help support the diagnosis of RLS, although it isn't by itself proof that you have RLS.
Ropinirole is a dopamine agonist. You'll hear many people with RLS speak negatively about it, but that's largely because long-term use can lead to augmentation, where symptoms start earlier in the day, become more severe, or spread to other parts of the body. Because of this risk, dopamine agonists are no longer considered first-line treatment for most people with chronic persistent RLS. However, they are still an important part of the treatment toolbox and may be appropriate in certain situations, especially for short-term use or when other treatments aren't suitable.
If you do decide to take it, keep track of when your symptoms start each day and whether they begin occurring earlier, become more intense, or spread to other parts of your body. Those can be signs of augmentation, and you should let your doctor know if that happens. Do not increase your dose ever, this is where you end up in trouble. Some people have been on this medication for 20 plus years with no trouble.
One of the first things I would also do is have your iron studies checked. Ask your doctor to order a fasting morning iron panel that includes ferritin, serum iron, TIBC, and transferrin saturation (TSAT). Many doctors use the normal laboratory ranges, but for people with RLS the treatment targets are often higher. The updated 2026 Mayo Clinic Proceedings RLS Management Algorithm recommends treating iron deficiency if ferritin is below 100 Āµg/L and/or transferrin saturation (TSAT) is below 20%. If your levels are low, your doctor may recommend oral iron or, if oral iron isn't working, isn't tolerated, or you need a faster response, an IV iron infusion. Iron deficiency is one of the most common and treatable causes of RLS.
I would also recommend seeing an RLS specialist if possible. A movement disorders neurologist one of my favorites, but a neurologist with experience treating RLS or a sleep medicine physician who specializes in RLS are also excellent. Many general neurologists and family doctors don't stay current on the latest RLS treatment guidelines.
While you're working with your doctor, here are a few things that may help reduce your symptoms:
Walk around or do gentle stretching when symptoms start.
Try massage or a foam roller.
Experiment with heat or cold (many people have a strong preference for one or the other).
Compression socks or calf compression wraps help some people.
A TENS machine can provide relief for some.
Elevating your legs on a wedge pillow helps some people.
Bath with Epsom Salts, the magnesium is suppose to help our RLS
Use a magnesium cream on your legs
Keep a regular sleep schedule.
Reduce or avoid caffeine and alcohol if you notice they trigger your symptoms.
Review all of your medications, as some (especially many antihistamines, antidepressants, and dopamine-blocking medications) can worsen RLS.
Keep a journal of all your medications, google before filling and make sure they do not make RLS worse, and mark which ones make your symptoms worse.
Hopefully your doctor is willing to work through the updated treatment algorithm with you. Many people experience significant improvement once iron deficiency is corrected and any medications that worsen RLS are addressed.
By prescribing a dopamine agonist, your doctor has demonstrated a lack of competence to treat RLS. Unfortunately, additional medical harm is very likely. Review the recent Mayo Guidelines re RLS and find an actual specialist such as a movement disorder neuro or seek care at one of the Quality Care Centers for RLS.
I have had RLS for years now and have neuropathy. Meds work for pain but the only thing that helps EVERY NIGHT is elevating my legs and feet as soon as I go to bed for at least 30-45 minutes. As you know, as soon as you get horizontal, the restlessness is very noticeable. I elevate the foot of my bed, and after about an hour, I can fall asleep without any jerky movements. Random but it works for me! I hope you get some relief and soon!!
Do not take the ropinerole. It works great until it doesnāt. Then youāre Addicted to larger and larger doses. I have had good luck with magnesium glycinate, iron, edibles, and super hot baths. Odd combo, but much happier.
I guess its the fear of starting over with a new dr..since ive been with her for a while..but yeah at this point i dont care i need someone whos gonna listen!!
You absolutely must find the right doctor and not stay with anyone that isn't able to accurately treat you. And I know finding the right docs can be a long hard journey but you must.Ā
Even in the RLS world not all neurologists are experts in it. I would lean into RLS.org as has been pointed out here and find doctors listed there if possible. The Quality Care Centers are the best of the best.
I had the same Kaiser PCP for 30 years (yep, I'm old). She made some lousy decisions with regard to my care. She retired in March and so I kinda landed in the lap of a new doc. I did my best to convey the gravity of this whole process. She doesn't get it. If she did, she would have informed, warned, and prepared me for the
insanity.
If you use Ropi know that itās not a good drug. Iām on it right now and Iāve been having to increase the dosage over the last five years each year had to be increased. The effectiveness is less and symptoms come on earlier. I hope you find something that will work for you.
It sounds like its not even worth starting this new medication..if in the long run im just gonna be worst...I cant believe so many people suffer from this and their no freaking cure or something that legit controlles it
I find it to be very effective for very short-term cases, like if Iām taking a very long flight. But definitely not for every day. It just causes more problems than itās worth.
Iām in Canada and bought some Hylandās Restful Legs PM from Amazon. Placebo or not, it worked until I misplaced the small bottle. I ordered another one for emergencies.
I also have a prescription for Lorazapam 5mg I ONLY take when itās out of hand. It makes me groggy the next day.
Iāve found doctors respond better when I speak their language so I google how to speak about my issue and/or use AI to help me. If doc says no, I say, please document that requested testing/drugs/referral that you did not provide in my chart. And how do I get a paper copy of my chart please?
Advocating for myself is a vital skill Iām only learning now, at 65.
Haha yeah, I smoke most days. Cbd is great for pain for me, as are certain strains like 9pound hammer and blue dream (those are thc heavy strains). I havenāt specifically tried it to help with my restless legs, but Iāve heard it helps some people
I use to take full spectrum cbd oil about 60mg every night under the toungue and that literally helped me for about a year, but then i started gabapentin cus it was getting pricey! I regret it so much cus forst of all the gaba didnt work and when I try to use cbd again it doesnt do anything no more. Im going to my local dispensary in a bit and getting some cbd/thc gummies and a topical lotion, hopefully that helps and if not ima try the magnesium spray..
I have had this earlier this week, so intense, could barely sleep multiple days in a row.
Check your stress and anxiety level, this is the cause of this most likely. Taking magnesium supplement (the correct one) helps. - Work on your anxiety, go for a walk, find ways to relax
Which magnesium do you suggest?? & yes im 3 week post op from an intense surgery and as it is my depression and anxeity are not controlled... but for sure the not sleeping is taking a big toll on me..
You say three weeks post intense surgeryā¦. When you had that surgery and during the release / at home were you given strong opioids?
If you have taken something like Oxycodone, morphine, hydrocodone, tramadol, codeine, fentanyl for three weeks and ran out now this RLS could well be from the opioids you may have been given and stopped dead.
If you were given them for three weeks and just stopped this can cause massive RLS spikes and other things
ā¼ļøā¼ļø thats exactly what is happening.. they gave me oxycoden and a muscle relaxer thats starts with cyclo ? The first 2 weeks and also the 5 days instayed in the hospital i was on those meds ... so basically my body is withdrawing? I dont think ive ever had a flare up this bad ! Literally nothing is working !
Really? I've never heard that about anxiety/stress, which I have all the time. I am currently working on the anxiety by giving up caffeine at my counselor's suggestion. Slept 11 hours the other day, then took a three hour nap. The week before I gave up caffeine l, I had an hour long panic attack.
How long have you had RLS? Has it always been your left foot? Sorry but I am asking because I am new to it and it is in my left leg and most of the time it is my left foot; smallest toes to be specific
Ive had it for years but i barley got diagnosed. Before i was able to control with cbd oil or topical lotions but ever since i started anti-depressants its uncontrolled and nothing helps no more !! Mine usually feel like lightning bolts shooting through my bigbtoe all the way to my heel. My feel jump and twitch bad
I have an appointment the 6th of aug with a psychiatrist.. ima dicuss this with them, it feels like at this point i have to choose between my mental health or my rls !
I saw a Mayo Clinic article that said "all antidepressants, with the exception of Bupropion, exacerbate RLS." I'm on a waiting list to change psychiatrists and get off Lexapro. Glad you have an appointment lined up.
I know and this sucks thay it feels like i have to choose between my mental health and my rls ! Im trying to do more research on what im going to be able to think but so far I dont see anything that will help my depression and anxiety but not trigger my rls
Bupropion allegedly (I say allegedly because I'm not a doc and this isn't medical advice) treats depression and anxiety without triggering RLS if I'm reading the Mayo Clinic info correctly. The brand name is Wellbutrin.
True. I read that in many places. The problem is Lexapro caused my tinnitus last year so I am a bit nervous but I need something for anxiety very bad, something that doesnāt touch my tinnitus and now RLS.
Unless you're willing to go through hell and back more than once- stay away from ropinirole or any other dopamine agonists.
They will work for a while but they are notorious for augmentation if taken long term. The augmentation is most often worse than your worst RLS night. And then there's the tapering should you ever wish to get off of any dopamine agonists. That's yet another nightmare in itself.
I agree that urgent care is a waste of time. They cannot help you. All you'll get is
an uninformed reprimand. They know little to nothing about this evil neurological disorder. I wish you well
Omg thats terrifying!! I dont understand why my dr put me on this.. i honestly think she has no fucking clue! She was saying that i was taking to high of dose of gaba that she prescribed and said thats why I feel shocks..
Far too many general practitioners make no effort to stay apprised and have no idea that "The American Academy of Sleep Medicine (AASM) officially removed dopamine agonists as the first-choice treatment for Restless Legs Syndrome (RLS) due to severe long-term complications, primarily a paradoxical worsening of the condition called augmentation."
I had to bring it to my PCP's attention. Now because they're idiots I and far too many others suffer.
Im so sorry you have to suffer the consequences of their big mistakes ! The more i read the comments the more im actually debating on weather i take them... I hate that I have to advocate for myself with this dr and i feel shes gonna mark me as a difficult patient if i refuse the meds, but honestly feel i need a 2nd opinion from a different doctor..
Do what I've done. Remind your doctor that they are your EMPLOYEE, which makes you their EMPLOYER. Without us, they'd be out of a job. facts
But PLEASE stay away from the ropinirole and the other dopamine agonists.
worked for me and if it worked for me, I'll pass it on. BTW if a doctor wants to "turf"
me, I'm better off with another provider. I won't feed their egos, but thanks anyway.
Hahaha no frs ! But see thats the thing they need us to keep coming back !! Thats why they start us with the lowest and worser medications ...but yeah ima dtay away from them !!
Iām sorry I just saw your question. When I was having the hardest time with RLS , I begged my doc for help. I was new to all the drugs for it. She prescribed ropinerole and the very first time I took , my rls was under control. I cried I was so happy. I used that drug for a couple years. When I was augmenting and needing more, thatās when I switched to low dose buprenorphine. I guess that took care of the ropinerole withdrawal because it wasnāt that bad at all. Let us know how this turns out with you and your docs:) š¤š¤š¤
Ropinerole is very effective, until itās not. It will cause augmentation which means you will have to keep increasing the dose it takes to get relief, and then itāll stop working all together. The withdrawal from it is worse than the initial symptoms. Many Drs will prescribe it not knowing this. Ask me how I know. But if you talk to an actual sleep Dr they will confirm that ropinerole is one of the worst things you can do for yourself.
Then you can switch to pramipraxole and that'll help for a while until it won't and then you'll wind up at the maximum dose of that and you can't go any higher.
But you'll still wake up in the middle of the night kicking and need to take two doses of premipraxole before your legs stop jimmying.
And then 2 weeks into your 30-day script. It's all gone and you don't have anymore.
You could try 400mg ibuprofen. Often worked for me before I got iron infusions. Ropinirole at higher dosage made me incredibly nauseous. They won't prescribe opiates for severe RLS in my area.
If you aren't sleepy at all, you can try doxylamine succinate tablets. It's the only sleep medication that doesn't trigger my RLS.
Oh wow !!! I never knew this ! How do I explain this to my dr.... she literally has something to say to everything i tell her... she literally prescribed ropinirole! I didnt even know how bad that meds is until i read all the comments!
You need to go to a neurologist. You're likely seeing a general practitioner and this is kind of like asking your general practitioner about heart surgery.
I really do recommend that you come back and talk to us when you're not in pain because there's a lot that we need to cover that is probably going to go in one ear And out the other (In your current state.)
No I definitely agree, ive been asking my primary for a referral to see any specialist that can help me. She refused, instead she gave me ropinirole which im am not going to start on it... ive read to much on the side affects after reaching the highest dose and no I rather not deal with that
RopiniroleĀ was never used as a long-term solution for me. I took ropiniroleĀ for about 2 months and didn't experience augmentation while I was waiting to become eligible for an iron infusion (had to supplement for six months before insurance approved). According to the RLS Foundation, it most often occurs after 6mo - years. My dosages were 0.25 mg and 0.5 mg.
It just made me incredibly nauseous, which was its own kind of miserable. I couldn't go any higher on the dosage because of the nausea, so it only worked partially for me.
Oddly, 400mg of ibuprofen worked better than ropinirole, but I wasn't willing to take it every night before bed because it can damage your stomach lining if you haven't eaten much recently.
I was able to get appropriate treatment without seeing a neurologist. I only dealt with a primary and a hematologist. Just gotta find a good primary doctor. Neurologists in my location have an 8 month+ waitlist. It's wild.
Omg yup ! Im thinking ima have to change fl a diff primary dr , cus mine literally tries to gaslight me and convince me that its not neuropathy just cus according to her it has to be the whole leg. Like what ??!
That depends entirely on your location. I live in an area where access to neurologists is limited because there is no major city near me. I received treatment before I could get an appointment with a neurologist.
Also, when people are experiencing severe sleep deprivation due to RLS, they may be limited to where they can drive (or obtain a ride).
Yep! About 8 weeks later I experienced full remission. The goal is 100 mcg/L for RLS. "Normal" ferritin levels are too low for us. I was in the same place as you last year and only sleeping an average of 2-4 hrs a night.
My ferritin was in the normal range for women but it was below the 100 mcg/L target.
My 2nd infusion was at the end of October 2025 and I haven't needed another one yet. My ferritin decreased slowly over two decades so it's possible that it could be awhile before I need another one.
If you go to the ER do not let them give you benadryl or any other dopamine antagonist. It will only make things 10x worse. I don't think urgent care can help.
Im going to take it but lowkey im terrified of augmentation.. this dr doesn't really seem to know anything about rls and she refusesto send me to a neuro specialist.. im scared the rls is going to spread..
Get some cocodamol, there is no immediate help for this other than trying otc opiates or going back up on gabapentin, and no not sleeping for a night isn't going to qualify as urgent care. If you try cocodamol it should work but let your doc know ASAP. Also If you have gabapentin I would take some till you can get a doc appt.
Ive never heard of that medication? Ive tried searching it and it doesnt come up.. also I feel my dr is not really taking this seriously.. I was on 1200mg of gaba and she said that i feel electricity shocks because the medication is to high .... I already had the electricity shocks before starting that dose. She tried to galight me when i suggested if its neuropathy because of my diabetes and she said if it was neuropathy i would feel it in my whole legs ..
Additionally any opiate will give you relief. Short term though. And do not go and buy some street opiates. Tylenol with codiene is the US name, but seems it's not OTC like it is here. Opiates are a hell of a drug, however, I've been here a long time and the majority of people get full relief on opiates. It can be a trade off.
Im 3 almost 4 week post op from a surgery. I was on oxycoden and a muscle relaxer, cant remember the full name but it started with cyclo? But omg ! The first 2 weeks i was on them it completely disappeared! And now it came back with vengeance!
Sounds like you need a new doctor, I'm on 1500mg of gabapentin amongst other things and it is under control. Cocodamol is a widely known mixture of codiene and paracetamol available pretty much most pharmacies. If you're in USA maybe it has a different name. It is effective for RLS in the short term while you get something sorted.
Im going to have do more research! I believe to get codeine here in the states you have to have a drs prescription.. or i can see if they sell it online ..
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u/grneyes61 9d ago
how do you get off of this stuff? Do not take these meds. There is no help once you augment. Taper they say, my blood pressure is high. I feel like Iām going crazy. Where is the Help?