Hi guys, i have been reading a lot on here and although i have seen a lot asked around similar situations i wanted to ask advice specific to me please.
Ive had RLS for a long time (im 42) but only recal getting it for example on long flights until around 5 years ago it started keeping me up at night. Im a chef and work long hours, the more active i am the worse it seems to be.
i was prescribed Gabapentin firstly which worked once i got the timing and dosage right but after a few years it stopped working.
I went back to the Drs who then put me on Ropinirole which didn't really work regularly until i upped the dosage myself to 3.5mg which i felt gave me side effects for example two weeks ago in my sleep (which has been rare) my arm had a spasm and bashed against my beside table, i also stated getting very scary sudden awakening feeling like I couldn't breath. I told the Dr this and i found him to he very blasé about it, i insisted i wanted to come off the drug so he has now put me on Pregabalin starting at 2 x 75 and weaning off the ropinorle with 2mg then down to 1.
That was a week ago and my sleep is at an all time low averaging 4.5/5 hours a night. Last night i took an extra 75mg tablet but it just didn't help, i had staggered my dosage starting late afternoon as i was off work and felt it coming on and was absolutely fine until my last dosage i took before sleep where within ten mins my legs were all over the place.
I do bodybuilding/weight training quite hard and its one thing that helps with my anxiety and weight but worried leg day is very intense and could be adding to my RLS?
I guess my question is from others experience and reading that pregabalin can take a few weeks is do i stick with it, up my dose, get off the horrible Ropinirole asap and push my Dr for more tests around iron and other things as this lack of sleep is making my life horrible and im getting headaches since starting the new meds.
Any similar experiences or words of help would he greatly appreciated, thank you.
Andy
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Welcome to the forum. You will find lots of help, support and understanding here.
Vigorous exercise can make RLS worse as well as exercise late in the day. Moderate exercise helps. Lifting weights by itself doesn't hurt, but doing so quickly would make it vigorous.
Do not reduce the ropinirole too quickly as that will make your RLS worse. The usual recommendation is to reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)
Normally you would start it at 75 mg 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks. After that increase it by 25 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg ."
Gabapentin and pregabalin are basically the same drug. If gabapentin worked for awhile, then pregabalin will also work for you. You probably needed to increase ithe gabapentin by just 100 mg. The usual effective dose is 1200 to 1800 mg. Also it needed to be take in doses of no more than 600 mg divided by 2 hours. It's also possible you started doing something that made your RLS worse like taking a new medicine or changing what you ate.
Yes you need to check your ferritin. This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin that has iron in it 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, 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, fennel, 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, CBD, 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, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
Hey Sue, thank you so much for the in depth reply i really really appreciate it. Ive edited my profile now i wrote this post in desperation this morning on no sleep. Im male, 42 and in Birmingham, England.
Ive spoken to my Dr this morning and he agreed to up gaba to 300 after i upped it myself yesterday from 150 to 225. Im still not sure how much to drop the ropinorole as still on 2mg atm.
He has arranged for bloods to be done but just dosent seem to know a great deal about RLS which kind of scares me. Now i know what to look for i will take notes and ask for all of this.
I weight train mornings and mid afternoon mainly. Very strict diet with carbs cut out after last meal around 6 with only protein powder or egg whites last thing. I take creatine and one thing that has come to mind is i take a natural testosterone booster last thing at night which i only started two weeks ago, may be a coincidence but around when my rls flared up so im stopping that. I also take a stim free pre work out id i train early. No alcohol for two months, dont smoke, zero sugar but sweetener in my protein shakes and I admittedly am addicted to sugar free squash and have drank it all my life.
The cannabis thing is something im already looking into, i dont smoke but may be able to source some oil from indica strains which i believe may help?
I wouldn't increase the pregabalin. I would go back to 150 mg. It is not going to do you much good anyway until you are off ropinirole for several weeks and any side effects might be confused with the symptoms from ropinirole withdrawal. And you might not need that much. When you do start increasing it once you are off ropinirole, only increase it by 25 mg at a time every 2 days - again so you don't take more than you need.
On the ropinirole since you are now on 2 mg, reduce by 25 mg every 2 weeks as I outlined above.
Joolsg has given you the names of some good doctors.
I would definitely explore cannabis as I find it immensely helpful for sleep. My doctor prescribes the flower and the oil. The flower is best for me as it instantly has an effect. I use a dry herb vape which just evaporates the oil in the flower and does not release actual smoke. The oil is longer lasting but not as strong. Yes the Indica - purple varieties are the best for sleep. I also tried liver for increasing my iron and it really helped as the heme is the most natural and bioavailable form for the body. Hope you find a solution.
Hey, thanks for the reply. I did manage to get a gummie last night and took it in half's. I went from 4.5 hours sleep the previous days to 8 last night so really feel that cannabis may be the magic i need at this stage as long as i can microdose with no effect in any other way.
I am down to .5 ropinirole and thought I was in the clear then after three days the symptoms came back and last night was terrible. My legs were climbing the walls and when i dropped off to sleep i was getting arm spasms and bashing the wall its really scary.
I have a Drs App next week but dont trust them to give me the right advice. As of now im on .5 ropinirole and 225 pregabalin. Would you stick at this and wait for the drop in dose to settle or up either med a little? I feel like this is never going to go away or settle. Any advice would be much appreciated 🙏🏻
Sorry if im asking stupid questions but im desperate. If i go back up how does the slow coming off it work it feels like ill never get off them. Also is the involuntary arm movement and spasms normal?
I advised you to reduce by .25 mg every 2 weeks. Since you started at 1.5 mg and it is now been 2 weeks, unless you had no symptoms or they settled quickly at each reduction you should have just reduced from 1.25 to 1 mg. So it is no wonder you are having symptoms like the involuntary arm movements and spasms.
You will get off it, you just need to take it slow and not be impatient.
Hi Sue - i wanted to ask your opinion again if i may, please. I went to the Drs yesterday and have bloods booked in. I was very frustrated by him as he told me to completely come off the Ropinirole by next week and double my pregab. I feel its very reckless of them to advice this as it appears they have no knowledge on the hell it would be if i did that. After your advice i went back up to 1mg rop and stayed on the 225 pre, for four days now its been under control apart from they meds wear off and i wake at 5/6am which sometimes only gives me 6 hours sleep even if ive gone to bed at 9/10pm. Im considering upping my pregabalin with a dose around 2am as i wake to go to the bathroom and in my mind this will then kick in mid sleep and hopefully not wake me up so early and id gain that extra hour or two in bed as my work life allows for this, i know you said not to but as i seem to feel in contact now and plan on dropping the rop .25 every two plus weeks id there may be any reason not to upmthe pre yet? Appreciate all your advice on this it really has/is helping
I guess you could try taking 25 mg then as it does help with sleep. I thought the gummie took care of your sleep problem?
Your doctor is not only not knowledgeable, he is dangerous in his recommendations. I would change to Dr Bagary whom Joolsg recommended below. He is very knowledgeable and will prescribe opioids which will help you get off ropinirole.
I only have pregabalin in 75mg capsules. He said to double up to 450mg starting in the morning which feels insane as i dont need them in the morning and thats for sure a waste of my tolerance to them, i am wondering if i take an extra 75mg during the night it may help me.
The gummies were pretty strong and i struggle to get the dose low enough to not make me high or give me brain fog the next day, i dont really want to take them.
Im going to call the place recommended tomo as i feel very alone with this and although you guys help id like to be able to have help from my Dr to taylor a plan for my individual needs.
Ignore your doctor. He is completely ignorant. I'm glad you are going to change doctors.
If your pregabalin is in tablets you could cut one in half. If in capsules you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and then open up the capsule and measure out 1/3 of it. Better yet ask your doctor for a prescription for 25 mg as you really don't want to increase more than that at one time when you get off the ropinirole as I mentioned above.
Welcome Andy.Weight training can help RLS, but try to avoid late night exercise as that can trigger an episode.
Your GP should be doing regular blood tests to ensure serum ferritin is above 100ųg, preferably 200ųg/L. An iron infusion is the most effective way to achieve this. So, get morning, fasting, full iron panel blood tests.
As gabapentin stopped working for you, it is likely you will need a low dose opioid once off Ropinirole.
Reduce slowly, as SueJohnson advises.
You will need to arrange 2 to 3 weeks off work. When you drop the last dose of Ropinirole, the withdrawals will be extreme. You will get little to no sleep for weeks.
Some people have reported that switching straight to Buprenorphine or methadone has completely avoided the hellish withdrawals, so that might be a better option.
Where are you? We might be able to recommend a doctor who knows a little about RLS.
Hey - thank you for your reply. Im in Birmingham, England. Unfortunately im self employed and taking anytime off is very hard financially but i do have two three weeks now of down time in a way so praying i can get this under control asap.
How would i go about methadone to supplement withdrawals i really cant imagine my Dr even entertaining that i dont have a lot of faith in them at all unfortunately.
You're not too far from Dr Jose Thomas at the Abergavenny sleep Clinic in Wales. He is one of only 3 or 4 doctors in the WHOLE UK who knows how to treat RLS. He will prescribe iron infusions and methadone or Buprenorphine, but you will need to ask your GP if they will continue the prescription on the NHS. It's red listed in many areas so most GPs refuse/aren't allowed to prescribe it.There is a clinic near you that someone else has recommended, so I will search and get back to you.
And you're right not to have faith in your doctors. RLS isn't taught at ANY stage so they are totally unaware of Ropinirole and augmentation and how severe withdrawal can be.
The Sleep Clinic at the Barberry Centee is recommended by many members. Dr Bagary is mentioned.
Call them and get an urgent referral asap and ask about Buprenorphine. Send an email explaining your predicament and that you want to discuss Buprenorphine/methadone and attach links to Mayo Algorithm, Massachussetts Opioid register and Dr Berkowski's study on Buprenorphine.
If they get bad ( very likely) you can use codeine to help. You can buy solpadine max with codeine over the counter at Boots.It would be better if your GP could prescribe 30mg codeine or 50mg tramadol or 10mg oxycodone.
And get some medical cannabis from curaleaf. It takes about 3 to 4 weeks, but vaping cannabis when it gets bad can really help. It gave me 30 mins sleep after 4 days of zero rest/sleep.
Hey, i just wanted to reach back out to see if you or anyone had any further advice, im stuck on 1mg ropinirole and 375mg pregabalin getting an all time worst sleep of 4-5 hours very broken sleep. I didn’t want to take the pregab so high but did out of sheer desperation to try help me.
My Drs are awful and wrote to the barberry nearly four weeks and messing me about saying they havent heard back, when i called them myself someone was quite abrupt and told me they wouldnt talk to me without a referral. Im going round in circles and at an all time low with my mental health. I cant afford private care and just feel abandoned.
I am going to try to start to come off the ropinirole .25 this week but have been reluctant as i wouldn’t be able to function if my sleep gets any worse.
I guess what im asking is, of and when i do come off this horrible drug is there a chance the pregabalin may work better? Is there ANYTHING else i can do in the meantime? Thank you.
I wish I could give you better news. Withdrawal is brutal.Do NOT increase the pregabalin. It will not make ANY difference at this stage. Pregabalin doesn't work while Ropinirole is over exciting all your D1 dopamine receptors.
The only meds that will reduce the severity of Withdrawal and give you a little sleep are opioids and cannabis.
As you're self employed you will lose money. I understand that.
Until you get off Ropinirole, you won't get your RLS under control or your life back.
The waiting list to see a neurologist privately is around 12 months. The NHS is short of around 1,000 neurologists. It's falling apart.
All I can suggest is to ask your GP again to help you off the poison they prescribed.
Keep a video diary and written diary to show how little sleep you're getting and to show your legs jumping.
Tell them Withdrawal is more difficult than getting off heroin and you are suicidal.
Tell them that RLS-UK website follows Mayo Clinic Algorithm and that a low dose opioid like tramadol 50mg or oxycodone 10mg is needed to settle the withdrawals.
And yes, pregabalin starts to work about 3 weeks after the last dose of Ropinirole.
So keep reducing, demand a 20 minutes appointment with GP and show them your sleep diary, a video of your legs jerking ( just force yourself not to move and the legs will jerk violently).
Many of us are now on low dose Buprenorphine and are completely RLS free. Low dose, long life opioids work very well.
And we're not addicted and we don't increase the dose.
Thanks you. I did manage to talk to Dr Jose in Wales this morning and after telling him my dosages he told me to up pregabalin to 450 until i see him. I respect everyones answers but with the lack of sleep making me feel like im on another planet i feel there is conflicting info on what drugs to take when and how much.
On the exercise, as Sue has said it's not a problem in itself and in fact moderate exercise is a good idea, most people find exercising in the morning is most beneficial. Personally I find it's the intensity of exercise which makes difference, as a cyclist if I go for intense HIIT type sessions or intervals to increase strength or power then I'm more twitchy later and wake up more at night. I imagine that you will want to push your muscles hard for bodybuilding and it's that sort of exercise which leaves the muscles sore/tired/aching which makes it worse for me. Having said that I just prepare for a worse night and live with it at the moment. Sports science and training is developing all the time and I've seen a few articles which say that the adaptations which prompt muscle fibres to grow and strengthen are mostly triggered within the first 5 - 10 minutes of exercise so theoretically you don't need to do too much to keep tone and strength which may reduce the resulting soreness and the impact on your sleep. Certainly as you get older (I'm a lot older than you!) the advice is "less is more", don't flog yourself to death and wear yourself out, instead concentrate on fewer, good quality targetted exercises and avoid training to failure or massive long sessions. Good luck.
I second many of the comments on here. Two things jump out at me...vigorous exercise can definitely worsen RLS . I can only do mild/moderate for this reason. Secondly do your sugar free drinks contain artificial sweeteners? This can be a real trigger and really aren't good for one's health overall.
hey guys i thought id do an update. I sourced some strong cannabis oil that has really helped me. Im now down to .5 ropinirole and last night didnt get rls at all. Ive been away for a week and alcohol and lots of eating out did seem to trigger it but hoping now im home to get off the ropinirole very soon get my bloods done and hope with any tweaks that come up through them and the pregabalin things will settle down. Only down side to the oil is be very careful with dose as i have taken to much at first and it made me quite high which wasnt that great.
Hey, i was on gabapentin which stopped working so instead of upping my dose they put me on ropinirole which then caused argumentation so they then told me to completely come off it straight away which i didnt, now im on ropin and pregabalin with the worst symptoms of my life.
No, sorry i dont know what the other things you mentioned are. My Dr is useless and im having to figure this out on my own hence me reaching out for help. They have more or less said that i have to come down .25 a week at a time from the DA and thats is basically, which petrifies me as i know this isnt good advice.
Thank you for your replys, i am going to go and buy some iron tablets this morning. 80% of the time i train before midday. I struggle with hunger in the evenings as im on a low carb cycle atm but am strong as managing it.
Ive just read your article it’s very interesting and i respect the fact that i am alone in this and am educating myself as much as i can.
Dear Andy, lots of good replies. But as far as I can see, no-one has suggested yet to go slower. You can cut 0.25mg ropinerole tablets in half. Small steps and waiting to let things settle in between is currently standard withdrawal advice, I recently learned (although that is in The Netherlands).
And yes, unfortunately, that draws out the process. But it may make it somewhat or even quite a bit better to deal with. You will have to find your own pace, and play with amount and timing of the reductions. As you seem to be strongwilled, I am sure you will pull it off. We are here not only for advice, but mainly for support and shared experiences.
I appreciate that, thank you. It’s very overwhelming atm and although i think ill get to the other side of this it feels like i dont know how much longer i can put up with it.
I will experiment with no using creatine for a while and see for sure. I have bought the iron tablets, did you say a recommended dose? I also found some codeine tablets in a draw i was thinking of taking with my meds this evening.
I meant around use when coming off DA’s and if you had any experience with it unbiased of if its legal where you are from, as it’s not legal here.
I train mornings around 10am with one session in the eve if i have to. I have 5g daily atm. And yes if and what i learn i for sure will use my experiences to help others!!
hey guys, im after some opinions after a very disappointing call with my Drs today.
After things getting very bad and down to 3/4 hours sleep on 1mg ropinirole and 450 pregabalin i found some codeine and decided to try taking 60mg at night with my meds, all at the same time apart from 150 pregab during the night. Ive done this for five nights and had amazing results sleeping 7-8.5 hours, mild woozyness 45 mins after taking but take in bed so simply drift off to sleep and feel almost normal again. No real worry of deep sedation as my girlfriend said I wake if she comes in and out or a small noise so all good on that front. I am now on day three of .75mg ropinirole and no side effects/augmentation so far…
My problem is at the dose of 60mg codeine i only have 18 days dose left and no way of getting any more, my Dr is a disgrace and after talking to me like shit today wont prescribe me any or any opioid or furthermore anything at all, I’ve explained i simply can not get off DAs with out somwthing and he will not help me. Ive asked for a referral to a clinic recommended in Edgbaston (Birmingham as recommended) and as im slightly out the area (its ten mins from my house) he said he cant chase my referral, yet when i made the mind bending suggestion of a thing called a phone he replied oh, i could try that, but im busy…this has been going on for a month.
I have an appointment with Dr Jose as again recommend but not for six weeks and i need to act now, also as per our call he has advised he also can’t recommend opioids.
I am worried about addiction or other problems with codeine but cant see another way off the DAs so my question is, i have to take matters into my own hands, baring in mind i reduced .25 3 days ago should i make the attempt to get off the last .75 in the 18 days worth of codeine i have, i know its meant to be .25 every two weeks but i feel i may achieve it faster with the codeine.
The only other thing to consider IS, if i did come off the DAs in that time am i leaving myself to addiction or withdrawals from the codeine causing myself a whole different program.
Bloods came back ok in the idiots opinion but i will be requesting the results myself as i couldnt trust him any less.
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Any advice gladly welcome
I'm new here. Where to go from here?
Even more advise please!
Advice on switch Gabapentin to Clonazapam 
New here—coming off ropinirole 
