So I’m unsure of what to do anymore. Nothing seems to work. Currently I m getting 2-3 hours of sleep a night if I’m lucky. I’m unable to concentrate and for most of my waking hours I’m constantly moving around, even during the day.
I just found out my ferritin level is 10 so I’m in the process of getting iron infusions. One down three to go. My doctor informed me that the treatment is probably not going to change anything since I’ve had symptoms of restless leg for over 20 years. This does not give me hope..,,
I’m taking 400 mg of horizont at 6pm , currently wearing off of ropinarole. Was taking 2 tablets ( each 0.5 mg) now I’m down to 1/2 a tablet which I take at 8pm and then at 9pm I’m taking 1 tablet of hydrocodone, not sure how much that is. Anyway just added this several weeks ago and after several days I cut down to half a tablet because it makes me super drowsy during the day and gives me indigestion. Anyway I didn’t notice any improvement. Now I’ve taken to smoking weed and if I’m really feeling hopeless alcohol on top that…..
Things are so bad! I’m unable to really work or stay present in my relationship and all we ever talk about is my damn restless leg problem. Is there any hope? If I had the courage I would just end things…
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Dark71
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Please do not even think of ending things. They will get better. The iron infusions once you get your ferritin over 100 helps 60% of people with RLS and in some cases completely eliminates their symptoms. Your doctor is wrong. It doesn't make any difference how long you have had RLS. The Horizant won't help you much until you are off ropinirole for several weeks and your symptoms settle from the augmentation.
You don't say what country you live in. It would really help us in our advice if you would indicate that and your gender on your profile. On the cannabis it should help you in your withdrawal. Vaping is the fastest way to get relief from the withdrawal sensations.
For the sleepiness ask your doctor for adderal or ritalin and take them in the morning so they wear off by night. And find out how much hydrocodone is in the tablet you are taking and let us know. For the indigestion there are a number of OTC ones that can help like pepto- bismal. You might ask your pharmacist or doctor for suggestions
On the withdrawal from ropinirole, you may be going be reducing by too much. I would suggest you go back up to 1 mg and let your symptoms settle. You can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. Let your symptoms settle before reducing further.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thanks, you’re very knowledgeable, and I really thought I knew it all. I have restless legs that go through my entire body with the same sensations, like restless body. For over 10 yrs it’s been the most excruciating and debilitating problem. I don’t say pain because we all know it’s more of an unbearable sensation, than what we consider a pain like being burned. After trying all drugs people list, only opiates give me any relief. This was great until the gov changed laws to protect drug addicts and regulates dosages for chronic pain patients also. So I try and budget the pills I have, which still leaves me suffering. I go to a pain management doctor who knows of restless legs, as do others, and although many docs want to give the correct dosage, they are threatened with losing their Med license, if they go above the gov dosage limit. New rulings in Nov 2022 should have reversed this, but it still continues. Is there anyone who advocates for chronic pain patients or knows anything to correct this. I live in NJ USA
Dr. Divya Gupta is a neurologist in Edison NJ (732) 321-7010 who was recommended by someone to the RLS Foundation however I don't know if she prescribes opioids. You would have to call and check. If you don't live near there she does telehealth appointments. The RWJ Barnabas Health Center in Elizabeth, NJ mentions using opioids
Thank you very much, I really appreciate your response. Both places are close enough, but prescribing opioids, and prescribing the correct dosage needed, are different. I’m a smaller person and don’t require a large dosage to begin with, but when my 10 mg of oxycodone is cut to 5mg, it doesn’t help. When I take the 10 mg that I used to be prescribed, before the government made laws to help drug addicts, capping dosages for everyone at the same amount, then I run out before refill time. I had finally found relief, in a minimal dose of oxycodone. But I’m being deprived, consequently having the pain increase my diabetic blood sugars, taking time off of my life. This is not an exaggeration, it’s an incredibly unfair and irresponsible “ law” that’s causing some with chronic pain to commit suicide.I’m just amazed that this problem has not yet been corrected, with the many established groups and advocates. My current pain management Doctor has taken good care of me, he had me on morphine then fentynal in the past, that I didn’t like, but now his hands are tied with these unfair prescribing laws, and I believe others will be the same. I will look into your info though. Thanks again
I agree 100%. You might also ask those doctors if they are familiar with the Mayo Clinic Updated Algorithm on RLS which states that the average effective dose for oxycodone is 10 to 30 mg and print out the appropriate section to show them at Https://mayoclinicproceedings.org/a...
You are doing the right thing in reducing Ropinirole.Once you're through the difficult withdrawal, the horizant will start to work. Together with iron infusions for that low serum ferritin, things WILL get better. Most of us notice a dramatic improvement in RLS once we are off dopamine agonists.
Stay strong. You are almost through it. If you can, take 2 week's holiday as you drop the last dose of Ropinirole. That 2 weeks is the worst it will be. Withdrawal is more difficult than from heroin. The cannabis will help.
Thank you so much for your encouragement and words of support. It’s hard to see a light at the end of the tunnel. Especially when everything one takes seems to make things worse.
Most of us have been in your shoes & most of us wanted to throw in the towel during it. Get family & friends to support you. Some of the nights will be extremely difficult.My IRLSS was 36/40, extremely severe.
It's now 0/40 , I get no RLS at all and sleep 8 hours every night. Dr Buchfuhrer says that is possible for 97% with the correct doctor and treatment.
I used cannabis to get me through withdrawal.
I now take 0.4mg Buprenorphine at night and it's been miraculous. Others do well on gabapentin, pregabalin or low dose Oxycontin or codeine.
Because I follow Dr Buchfuhrer and Dr Berkowski, Winkelman and Dr Chris Early at Johns Hopkins in the USA and read all their books, websites and research papers.They say withdrawal from DAs is hellish and more difficult than heroin/ crystal meth withdrawal.
DA withdrawal lasts months while reducing the dose then ramps up after the last dose is dropped.
I suspect it would be alleviated if doctors would prescribe methadone/Buprenorphine during the withdrawal period. In the UK, withdrawal isn't understood or acknowledged by the medical profession which isn't a surprise.
All I know is that I went through it in 2017 and nearly didn't make it. If my husband had not been with me constantly, I suspect I would have thrown myself out of the window.
I don't know I just think it's hard to make a sweeping statement without actually experiencing it for yourself.I highly doubt the guys you mentioned would have experienced it.
I've had withdrawals from opioids, fentanyl and DA's and with hand on heart the withdrawal from the fentanyl and opioids was way way worse than from DA's.
I was on 6 pramipexo a dayl at one point and the withdrawal was hell but nowhere near the hell that is opioid and fentanyl withdrawal.
I defer to your lived experience. As you've experienced both, you are in the better position to say which is worse.I will simply say that DA withdrawal can be hellish for most.
I agree completely, it's just not fair (I sound like a child) that we have to go through all this. As you say I think we've all been at throwing ourselves out of windows stage at some point yet it's looked upon like a mild inconvenience to those who've never experienced it xx
On the ropinirole, I missed the fact that the tablets are .5 mg. The usual reduction is .25 mg so you are definitely reducing by too much at one time. Go back up to 1 mg and then cut a .5 mg in 2 so you are only reducing by .25 mg. Again if that is too much get the jewelry scale.
Also I'm confused because I don't believe Horizant comes in a 400 mg dose.
Hi there. This sounds awful and I’m sorry you are going through it. You can bump your Horizant up to 1800 mg. I think you are on too low of a dosage to get you through withdrawals. You can always cut back one you are clear of the DA’s. Horizant works best when taken with fatty foods just FYI
Have you contacted Dr Buchfuhrer? If you can get an appt out to see him you should. He will have some fresh ideas for you. If your legs are super jumpy in the night try pressing the arches of your feet hard against something. I have a bed frame that I press my feet against and it helps. I’ll also sometimes position a tennis ball in between my calf muscle and the mattress which will stop the jumping sometimes. Hang in there. You will get through this and be very happy you stuck around.
I can't add to the advice you've been given but wanted to empathise with your situation and cheer you on.You can get through this dark tunnel and things will get better.Hang on in there. Life will be worth living again.
I completely understand the dark place you are in. I came off of 8mg of ropinirole. It was the most difficult thing I’ve ever done. Unfortunately the closer you get to 0mg the worse your symptoms can get. Hang in there. Once you are ropinirole free for a few weeks things will get better. During this time, my only comfort was the thought that I could end things, but I chose not to one day at a time. As others have said, it will be impossible to assess what treatment will work while you are still withdrawing. Did you realize ropinirole withdrawal can cause severe depression? Called DAWS. Our dopamine receptors have to start creating dopamine on their own again. It’s all such a complicated process! I hope your partner is understanding of what you are going through. One more thought, for myself alcohol is a major trigger. I’m hoping your alcohol consumption is not making things worse for you. Pay attention to what triggers your symptoms. That is half the battle. Good luck to you.,
-It definitely will get better as everyone is saying
-do those things that Sue says about the shaving dose and jewellery scale.
-as soon as possible send gender and location for further advice
- please cut the alcohol out. It is definitely a negative for your RLS
-probably all of us have been suicidal at some stage in the past and come through the other side
-for Joolsg it is buprenorphine and for me it is iron infusions (numerous and keeping my ferritin above 480ug/L, whilst taking care to watch my TSAT and phosphate)
-there will be a concoction of stuff which eventually suits you
-support is vital at these blackest times. My dear partner used to find me in floods of tears stomping around the living room listening to music at 2am. He’d make me get dressed and we’d go for a brisk walk through the village and he’d talk about all sorts if things to distract me.
-I rang the Samaritans (U.K. suicide help line) on 4 - 5 occasions, and asked them please to talk to me and hear my distress for about 10-20 minutes and it did help get me through those blackest moments
-please just stay with us all as we genuinely understand a lot of what you are going through. And we genuinely LOVE you and know there is better life to come 🤗❤️
Can only add to the sympathies. I too have the constant torment of RLS during both the day and night - trying to raise my ferritin levels as we speak - and can’t even walk it off because of MS, so I know your dark place.
This is a brilliant forum for both good practical advice and empathy. I have learned more from this than anyone else, and even educated my doctor about dopamine agonists!! Please stay hopeful that things will improve, because they will.
I was having suicidal ideation until Dr. B. prescribed me low-dose (10 mg per day) methadone. Immediately my RLS symptoms were gone and I began sleeping 8 hours every night. It was just that easy.
So sorry to hear what a horrendous time you’re having. This is such an awful disease. Hang on in there as the iron infusions are very likely to help massively. I had my first in December- took quite a while to work but it has made a huge improvement. Doesn’t matter how long you’ve had rls for. The suggestions and support on here are so good and we are all here rooting for you 😍
You poor soul .. just remember that you are not alone in struggling to find something that works, and then having to resort to 'other things". There are many of us out here .. myself included. All we can do is provide support to each other, keep trying different remedies, especially taking serious note of any advice that Jools, Sue and others on here who have devoted so much of their own lives to helping others with this awful syndrome, and keep hopeful that the future brings new medications. Big hugs.
Could you try some CBD oil? It won't be perfect but it does give me sections of sleep at night. I just get up in the night after 2--4 hours and take some more. Then I go back to sleep. I am so sorry you are going through this.
Nobody will ever understand what a debilitating syndrome our Restless Legs are unless they too are victims. I find that 80% of the time when my symptoms are at their worst if I raise my legs up against a wall (look on YouTube "Benefits of Raising your legs for 20 minutes") and listen to music with earpods it gives some relief. Not sure if it would be of any help when you are decreasing your medication but worth a try!!
I’m so sorry you are suffering. Another victim of the medical establishment’s love affair with DAs.
Your description about how it affects your life, your relationship and how all you can think and talk about is your RLS and that you want to end it all hit a deep chord with me.
I had a terrible time after coming off pramipexole in late 2020. It took a while but eventually life improved. I’m now on around 500mcg of buprenorphine each night which has helped, along with watching what I eat (ie: no alcohol, sugar, msg) I also take iron tablets every second day to try and lift my ferritin as high as I can. I’m probably one of the unlucky ones who doesn’t benefit from raising iron levels but hey, you do whatever it takes.
RLS still dominates my thoughts and conversations. How can it not? The terrible trauma from this disease never leaves you.
Hang in there. There’s a warm, comfortable bed and peaceful nights at the end of the dark, twisted road.
For the indigestion, I would suggest eating something before you take the opioid. This has helped me. It’s difficult because I take it at night but some yoghurt or something else light if you can. The other thing is that cannabis consists of THC and CBD and not everyone tolerates both. I’ve been helped by THC but CBD seems to have a negative effect. Try and hold out, things are likely to get better once you’re off the DA agonist.
Please don't give up. I'm off ropinerole now and on gabapentin. I had to fight my gp to get this far. CBD helps. My ferritin is 70 , but this is normal (according to gp!) So I'm taking gentle iron and vitamin C.Although not there yet (after 40 years), such an improvement since ceasing ropinerole. This forum is wonderful. It gives you hope. I have written to the head doctor in my area begging her to listen to the latest research. We will get there!
I understand everything you’re going through, RLS. it’s the pits I can’t think or know of anything worse than what we have to go through. Day and night pacing or thrashing legs. For 7 years.
I was at the end of my tether, suicidal when eventually I was referred to a Sleep consultant. The team Px Methadone and even though I still have the RLS I am able to cope. I have a restrictive diet, some foods make so much worse, and not much appetite. Some nights I have 3-4 hrs sleep. Occasionally 6 hrs. I know I need another increase soon which I have to wait as the medication takes a while to be in my system but I’m able to cope with life now.
Know that we’re with you and understand how difficult life is for you. Can you be referred to a sleep consultant!
Sending love, prayers and a very big HUG for you. 🥰. We’re all with you sweetheart.
Hi Dark71, just thought I'd add that depending on where you are, if it's available I get a lot of help from some types of THC gummies. Through a bit of trial and error, the most effective for me have had a combo of THC, CBD & CBN. I don't know if that kind of blend is available for smoking, but if it is I'd highly recommend it.
Hi there,Just gonna pop my tuppance worth in to say I know how you are feeling very very well. Having had RLS since I was a teenager, am now 57 and have suffered with it all my life.
Got a double dose due to the hereditary factor and it's also a side effect of fibromyalgia which I've had since my early 30's.
When I say I've tried absolutely everything that has been available to me as it's extremely severe, can have it for literally days at a time, can't sit, stand still, lay down nothing, it gets so bad that even walking doesn't relieve it at all and my legs spasm as the sensation is so strong.
I also get it in my arms as well, when you try to explain to someone how it affects you they simply cannot comprehend it though through no fault of their own.
I literally cannot relax, sit or sleep for days and the constant RLS is akin to torture for days at a time. I find the worst times is at 4 or 5 in the morning when you're so exhausted and alone those thoughts come and many many times if I'd had a gun I would have no hesitation in shooting myself.
I finally found opioids literally by mistake as they were prescribed for the severe pain I was also in. I just couldn't understand why this hadn't been made a option or even brought up in the many many doctors appointments and hospital appointments I'd attended! They are absolutely the only thing that works for me but obviously it's once again a double edged sword due to the side effects over year's use and in my case becoming addicted to them (no that was never mentioned either)! But still that is my only option so I'm still grateful I found a solution. I've been told I will not be able to be opioid free as the RLS will come back immediately I stop taking them and they're out of my system.
The only other thing that I've found to be some benefit as mentioned by other members is cannabis, it's nowhere near as effective as opioids but definitely does work up to a point.
I hope you find some help or at least some benefit in knowing you're not alone in this and so many members on here are so dedicated and driven to find solutions that may help others.
My experience about withdrawal had been horrible my first withdrawal was an antidepressant not big deal in less than 3 months I was out but reducing gabapentin that was something else I had to do it alone and nobody told me before anything about the withdrawal symptoms it took me 6 months and an experience bad. Someone said about fennel seed why don’t you try is not expensive and you’ll see if work ok
Hello Dark71. I’m so sorry that your suffering like this and I know what you’re going through as I’ve been reducing Ropinirole from 6mg/day since 23 October 2022 and now down to 1mg. I think you have done really well and it would be such a shame if you put all that great effort at risk. Your on the final stretch and the finishing post is in sight and it’s people like you telling your story about how close you are to being Dopamine Agonists free that gives people like me climbing the last summit the strength to carry on. I’m a bloke of 77 who’s had RLS for 40+ years so you do this for all of us struggling at the end and then SHOUT like he’ll about your fantastic achievement when you’ve done it 🥇🏆
once you are off ropinarole you will get more sleep. once it stops working it makes you feel worse. Hydrocodone does not work as well as methadone. many RLS people need 20mg of methadone to help. Go to RLS.org and see a RLS doctor.
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Restless leg
SWITCHING FROM GABAPENTIN TO PREGABALIN
pregabalin question
Reducing Pramipexole 
