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Restless Legs Syndrome
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Tezx

Hi my name is Terry, i have suffered from RLS for a number of yrs on and off , however it got worse this year. I thought that maybe it was because i was slowly weaning myself off morphine sulphate as i have back problem and obviously thought it was a side effect but RLS still continues. My last GP prescribed Quinine tabs but i didnt take them as there was no proof they worked. My recent GP prescribed Ropinirol 0.25 mcg which helped for 3 nights and then the symptoms continued so they were increased to 0.5 however after afew days the symptoms returned. Then my GP increased me to 0.5 in the morning and 0.5 on the evening but now its worse than ever. Im hardly sleeping and feeling so low just like before i had the tabs prescribed. I feel as if depression is going to set in again and make me have suicidal feeling, dont know how much more i can take

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Hi Terry,

You have a few things going on:

The morphine sulfate: opioids are a time honored means of treating rls (dating back to 17th century). It is very likely that the morphine was masking your rls and it became evident when you reduced/eliminated the opiate.

Ropinerole: it sounds as though you need to get off ropinerole ASAP. If it isn’t helping there is no point in taking it and it has a very significant downside in that it can ultimately make rls much worse. You need to withdraw fairly gradually and to expect a worsening of rls temporarily. Hopefully as you haven’t been on the ropinerole long it won’t be too bad. There are other treatments. Many people use a temporary opioid to help them with the worsened symptoms they experience as they withdraw from ropinerole.

Quinine doesn’t work and can be dangerous do you were dead right not to take it. In general there is a disappointing level of ignorance amongst the medical profession concerning rls and its treatment.

Future treatment: one of the first things to consider is your serum ferritin. Get it tested by GP. Raising iron levels can improve symptoms significantly. If your serum ferritin is less than 100 (make sure you get the actual figure - not just that you are ‘normal’) start an iron supplement. Iron bisglycinate is a favourite of many on this forum. Take it on an empty stomach and don’t eat for an hour to improve absorption.

Other possible treatments; you could consider resuming an opioid (targinact - a mix of ocycontin and nalerone - is lisenced for rls in the EU or many take tramadol). Another option is an A2D ligand such as gabapentin or pregabalin which work well for many.

It is also worth making sure you are not taking anything that is exacerbating rls such as anti-histamines (some), Benedryl, or Zantac. Also ice cream and refined sugars.

Temporary relief, sometimes up to two hours or so, is sometimes afforded by a very diverting activity such as a computer game, yoga stretches, a magnesium rub, running cold or hot water on the legs - it varies from one person to the next. There are loads of suggestions dotted through the forum.

Good luck.

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Thank you for your reply, i do take gabapentin 1800mg a day and have done for over 4 years . I also take amitriptyline which i have read can worsen my condition.

I am going back to see my GP on Monday and demanding that i have my bloods taken! I am presently trying to slowly reduce all my pain relief medication so the thought of taking more is not really an option...yes i want relief from my RLS but preferrably not with the help of opioids. I am so grateful for your advice and such a relief speaking to someone who understands

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Yes; amitryptiline worsens rls in a high percentage of cases. There are some - very rare - cases where it helps but it is safer to assume it is an exacerbant.

It is possible that if you eliminate/replace amitryptiline and increase iron (if serum ferritin low) you will find symptoms improve. I hope so. Also worth checking B12 as suggested below as well as vit D which some people have found helpful.

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Thank you yet again. I told my GP that the amitriptyline can worsen RLS and she looked at me like i was stupid. When i first visited her with my problem she just told me to drink plenty of toxic water ...i wouldnt like to write what i felt like saying to her.

I am not stupid and obviously researched all aspects of RLS unlike my GP . I had my gallbladder removed in August and actually the nurse said my iron levels were low so they needed to check them again. When i suggested have my iron levels checked a couple of wks ago my GP looked at my levels previously and said no they were fine ! Omg that was a couple of months ago and why were they low before if i no longer have periods. I know i have a fight on my hands but im not giving up , thanks to all your help and support

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You sound like you are all over this which sadly is necessary. Your experience with your GP is unfortunately very familiar. There are so many medical practitioners who not only do not know anything about rls but feel threatened and defensive when faced with a patient who has a knowledge and understanding. It is beyond frustrating.

Iron levels spontaneously dropping is a feature of rls in many (but not all) sufferers. It sounds like you are in this category. The good news is that bringing levels up might help. GP surgeries invariably tell you that levels are ‘normal’ for serum ferritin. Make sure they give you the actual figure. Normal can be as low as 20 but we need ideally to be well over 100. Some lucky sufferers find their symptoms completely resolve following an iv iron transfusion. There is a lot of useful info on the rls section of the Johns Hopkins Hospital website.

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Many thanks as always i will let you know how i get on and fingers crossed

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I have just resorted to taking oramorph because i just need to sleep so badly !!!

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It is very important to get some sleep. In a cruel irony lack of sleep can exacerbate rls symptoms and send you into a tail spin. You might find a few nights of opioid induced peace in the legs results in a slight improvement overall.

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I was wondering how long it will take me to wean off Ropinirol, i only took 1mg for 3 days i think and actually started the drug less than 2 mths ago. Im going to see my GP in the morning so the more knowledge i have the better . Thank you again for all your help

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There is likely to be a range of views on how long to take. My own is that bearing in mind you weren't on it for too long, try to get off it as quickly as possible and get the unpleasant side effects over with soonest. It partly depends on what size of pills you have. If you only have 1mg pills, then the smallest you can divide into them is probably one quarter. I would reduce by one quarter of a pill (0.25mg) every 4 or 5 days but if you have smaller pills and can reduce by a smaller increment each time I would probably do that - although maybe for a shorter time - 2 or 3 days at each dose. One way or another I would be inclined to get it over with in at most 3 weeks. However there are many on here who might counsel going much more slowly even though you weren't on the drug for long. There is a good chance you will experience very much worsened symptoms for a while in spite of the short time you were on it. Most people use an opioid to get them through the worst of the withdrawal period.

It may be worth being prepared for a frustrating time with your doctor - as he/she suggested increasing the dose in the first place, I would expect that he/she will not be particularly supportive and is likely to be blithely unaware of the torture accompanying dopamine agonist withdrawal. So many of them are.

Good luck.

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Thank you but can i ask what you think of Kratom please

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If you look back through my posts you will see that I use kratom as part of my relatively complex rls treatment programme. I find it immensely useful, particularly in an as-and-when context. Unfortunately, I hadn't heard of it when I was withdrawing from pramipexole but I have seen reports from people who found it useful during that process.

It has some downsides. The most obvious is it is unregulated and consequently there is a certain risk attendant upon consuming it. However I have never had any problems and have not heard of other rls sufferers experiencing any. Provided it is sourced from a reputable supplier I would imagine one is fairly safe. The second is kratom only lasts about 4 hours so once the effects wear off one is woken again by jumpy legs and a second dose is required. Third, I found that there was a slight increase in dose required when I was using it as my main treatment option. Fourthly, it is easy enough to form a dependency on it. Against this, however, it is relatively easy to discontinue - 4 days or so of flu-like symptoms and then back to normal - nothing like the weeks of misery coming off oxycontin or the torture of withdrawing from dopamine agonists (I have discovered a lot about withdrawals thanks to my rls journey).

In summary, my experience of kratom has been very positive. I tend to think very highly of it.

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Im so confused after watching utube videos all about the pros and cons of using Kratom. I live in the United Kingdom and could only buy it on line and the sites advertise endless drugs , most of which ive never heard of . Then am i guaranteed theres nothing added to the Kratom. I also worry that when i go on holidays abroad i wont be able to take it with me as its illegal in so many countries.

Think its back to the drawing board for me . I have began using CBD oil which isnt addictive as the THC is removed ...i only started last night so not sure if it will help me at the min. Maybe the dose will be too low , who knows .

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There is a lot of conflicting information about kratom and it is a very personal choice. One thing I noticed about the more negative comments was that they tended to be by people who were taking the kratom for recreational purposes and in far larger quantities than would ever be necessary to treat rls (frequently for prolonged periods) and often as a means of deferring coming down from opiate abuse. Used like this, kratom is likely to cause problems but for rls use much lower quantities are required. Those using kratom for medicinal purposes/pain relief tend to post more positively about it.

As I said, I find it a useful additional tool in my rls treatment armor. I do not rely on it as my sole treatment although there are people who do. IF you do decide to give it a go, I order kratom from this website: dekratomshop.nl They send it by post - you can get small-ish quantities so you could order a small amount to see how it works for you. Red vein borneo or Borneo red is a strain a lot of rls sufferers start with. It is probably not advisable to try to take kratom with you through customs so not great for going on holiday.

CBD oil has a mixed outcome. There are some on here who find it helpful. It did nothing for my rls and was comparatively expensive so I gave it up. I have seen others post that they had a similar experience. I do use whole plant cannabis as part of my rls treatment regime but more to induce sleep as for me it doesn't help hugely with symptoms.

I am not a recreational drug user but my rls has made me very lawless when it comes to treatment options!

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I totally understand , when my legs and sometimes arms are at their worst i will honestly try anything. Desperate times call for desperate measures and dont we know it. I wasnt able to see my gp this morning ...i had the chance of some peaceful sleep so i took it. Sometimes i forget what it feels like to go to bed at a normal hour and just fall asleep until morning with no interuptions .

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Please help me , i saw my gp who has informed me that ropinorol is the only drug that can be given for rls and im weaning off them. My gp increased them to 1mg and my symptoms were worse than ever so now i have nothing . My gp told me to ride it out even tho i sat there in streams of tears . My partner just told me maybe shes right because its all due to me weaning off the morphine and its jist a side effect. I feel so alone and no one including my gp knows exactly what i am going through. Basically ive got to suffer , if someone broke their leg they wouldnt be told , oh go and have a paracetamol you will be ok, im so angry and upset

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Hi Terry,

I'm so sorry to read your post - incredibly frustrating. I think you should start a new thread - you would probably get more diverse feedback that way. Your GP is ABSOLUTELY wrong. The first port of call by experts in rls is to check serum ferritin and make sure that levels are over 100. As I already posted, raising iron levels can result in a significant improvement in symptoms - not for everyone but for an appreciable majority of sufferers.

Then, obviously, the elimination of any possible exacerbants. Did you discuss the amitryptiline with your GP. I would be very inclined to reduce and eliminate that drug. Is there anything you could replace it with?

Because of problems associated with augmentation and also impulse control issues, rls experts tend NOT now to prescribe a dopamine agonist such as ropinerole as a first line of treatment for rls. In your case the ropinerole seems to be even more counter-indicated than in the average sufferer as it isn't working well for you and you aren't getting any sleep.

The next option is usually gabapentin or pregabalin. Given that you are already on gabapentin, this is probably not a great option although for some people pregabalin works for their rls when the gabapentin does not and consequently I would have thought it might be worth trying to exchange the one with the other. It would be a particularly good outcome if a drug which you were taking for a different condition also helped your rls.

In your shoes, I would be inclined to order some kratom just to help you get through the next little while.

I really think you need to go back to your GP and insist on a serum ferritin test. You should also discuss the possibility of using pregabalin in place of gabapentin and also the elimination of amitryptiline.

There is a good medical textbook called Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Henning which can be ordered from Amazon and might be helpful to introduce to your GP. Otherwise, if you join the rls foundation (US group), it has some very useful handouts to bring to your GP about iron, dopamine agonists (ropinerole is a dopamine agonist), gapapentin/pregabalin and opioids.

It is also a good idea to have a look through the Johns Hopkins Hospital website - there is an rls section and some of the leading world experts have short videos on there which are well worth having a look at.

It is very important not to despair. There are all sorts of things that can be done. You are encountering a frequently documented problem with resistence from your GP. It adds an extra layer of hardship to the rls but it is not insurmountable. You will get a workable system up and running in due course. You will get your life back. You need tenacity and grit to get there and I'm sure you have plenty of both of those if you have managed to live with rampant rls up to now.

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I am having my bloods checked but not until a wk Friday ...this is only because i kept saying how everyone on this forum says i should have them checked. To be told all she can prescribe for restless legs is paracetamol, quinine or ropinirol is a joke .

My eldest daughter has told me to try cannabis because she was worried about Kratom, only because there is no one here to actually advise me on what doses to take of it each day. I have cut my 0.25 tabs of ropinirol in half as i wasnt sure about weaning off them. Its 5 am here in the UK and i still havent managed to get any sleep as my legs are worse thanbever

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You poor thing. No sleep is dreadful. I think you are right to take half a tablet for 3 or 4 days and then eliminate. It is likely your legs will remain bad for up to two weeks from the last pill. If you have any leftover opioids they would most likely allow you some sleep - for a respite. Once the ropinerole is completely washed out of your system you may find the symptoms improve although less so if they are being exacerbated by amitryptiline.

Cannabis works for some people but is generally not as reliably effective as Kratom.

When I was going through that acute phase with no assistance from my consultant, I considered emailing her regularly through the night so that she could see that I was actually awake.

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I did take 10mls of oramorph at 6am this morning so i do resort to it if necessary. I would love to call my gp endlessly through the night to remind her im still awake ...let her see how i am feeling.

I am going to take the half of ropinirole for afew more nights and then completely stop

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You are doing all the right things, Terry. Good luck

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Just a quick note to say i have reduced my amitriptyline by half the last 2 nights and taken codeine and i actually fell asleep before 2am last night or should i say this morning . My legs still bother me for a while before but anything is progress and i am feeling so hopeful that as time goes on they might improve . I could not of achieved this without yours and everybodies advice and support on here. Thank you for giving me hope x

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I am SO delighted to hear this. Thank you very much for letting us know. Sometimes the solutions are within our grasp. I hope things continue to improve for you - which they well might as you get your iron levels up and reduce the amitryptiline.

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Its 5.30am here in the UK and last night i decided to not have a Ropinirole...i have reduced my dose by halfing my 0.25mcg . I was expecting a not so good night but didnt realise it would be quite so bad :( . Shall i take the half a tab tomorrow or should i say tonight or should i ride this out ?. I have my eldest daughters graduation Thursday and didnt really want to go looking like the living dead !!!!

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Eliminating ropinerole is going to be really hard. You have already reduced it and you haven’t been on the reduced dose all that long. You do have to live your life as well. I had a wonderful day recently at my own daughter’s graduation and I would not have wanted to be sleep deprived for it. I am not a doctor and cannot give you medical advice but as a parent and fellow sufferer I would be inclined to say rake some ropinerole before the graduation and have a lovely day. Take lots of photos.

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Thank you , good advice as always

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Obviously I meant 'take' - not 'rake'!

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Have your B12 levels been checked, I was in medication for restless legs, turns out I had vitamin b12 Deficiency

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My GP said i didnt need them checked because my iron levels were fine when i had my gallbladder removed in August so im going to have a fight on my hands ...which im not giving up on. Im am going to demand my iron and B12 levels are checked. How are your restless legs now ?

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Hi, would your GP give you a referral to a Neurologist? They seem to have more knowledge on RLS than GPs. I wish you luck.

Alm

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Im in England so i have no idea who i should actually see . I just wish someone on here was from there so they could recommend a Neurologist

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I did mine through spire hospital

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Hey, my iron was fine, but they tested me for B12 as a separate, they can’t say no, hope they can do this for you. I hope you get it all sorted, for me I have been on ropinirole, quintine sulfate u name it and nothing helped, just glad I know that my B12 was so low that it’s getting sorted and hopefully my legs will ease and my sleep pattern will return to normal

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Hi Terry, I sympathize with you and wish you the best in your search for help. I’ve had RLS for 30 plus years and there have been many times that I thought I would lose my mind. It’s 11:30 pm here in the USA and I have been walking around the house for a couple of hours and still no relief. I just want you to know you are not alone in this and I really understand what you are going through. There are some very nice, caring and knowledgeable people here that want to help. Stay strong!

Dakota

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Thank you Dakota for your reply and kind words. I am beginning to feel happier knowing i have people to speak to and such brilliant advice too

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I know exactly how you feel! I’ve had it for about 20 years and it’s now horrific. I take 1.25 Ropinrole as without it I have to stand up all night. I find if I take them an hour exactly before I intend to go to bed, I can usually get to sleep. The evening before is often terrible though! Don’t give up. There must be a cure somewhere!

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Thank you Bee and yes theres hope for me yet so i wont give up trying

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I totally understand how you’re feeling...I’m having an acute episode right now and I’m having suicidal thoughts too. I usually do when it’s bad...you’re not alone, my friend. Don’t let your Doc keep raising your dosage, it’ll just be that much further you’ll have to go to get off the drug. It sounds like you’re augmenting on it. I have found that not only are the Docs not informed about RLS, but they don’t seem to care...they discount it and seem to think you’re overreacting! So frustrating!! I’m wishing you peace and sending you hugs!!

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Its comforting in some ways to know im not the only person who feels like i do. Im so sorry that you feel like you do when RLS is at its worse and yes i know that feeling ...its not good feeling the way we do . Im seeing my GP in the morning so fingers crossed . My thoughts are with you too

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Oscarsaurus, we are all on this site for the same reason.....I am 77 a professional and have had this since I was 19, at that time my symptoms were off/on and not severe. I also got along then on just a few hours sleep. None of us can do that now. First idea is to change doctors but I have found the neurologist not to be any better than a GP, just different pill ideas. In the above thread, I would like to add at least two thoughts. Do some research on the iron discussions. There is much discussion that it is not necessarily your serum iron which is important but the iron that crosses the brain/blood barrier. Some qualified doctors are now doing that, with apparent success, intravenously. Also, see if you can find an antidepressant that works for you. Suicide feelings are very common with this disease. Someone mentioned to stay away from ice cream and sugar. I totally agree. I am also off gluten. How ever, both are not 100% neurotic but about 90% and the more I stay away, the less I crave. Look up the thread on caffeine, this is totally contra intuitive. I may have started the thread a few months ago and then several of the members wrote in either agreeing or trying. The deal, for me, is if I am up in the middle of the night, 2 or 3 AM, hitting the walls, crying and banging my head, I have a small cup of caffeinated coffee, no sweetener but milk or cream if you need it. I don't drink more than 6 ounce for bath room reasons. Some people are even eating a small amount of very dark chocolate at night. The coffee works for me in minutes, followed by a very hot shower. My worst thing when I am really bad is eating and then I gained too much weight. Do you do that. Now I don't keep anything "dangerous" in the house and I somehow manage to stay away from my husbands bread. Here is something else I do...I do any thing productive. If I can work on the computer I write to friends. Sometimes can not sit still to do that. Otherwise I re-arrange drawers, clean, dance by my self, weight lift, do LOTS of stretching stuff. I forgot to mention I actually went to the "great" Johns Hopkins Hospital this past July. I was following the work of a Dr. Paul Allen, PhD who said excess glutamine was the etiology of RLS. I was so excited but forgot to ask how he dealt with his findings. Well, he was using a gabapentin derivative (which is too hard on my pancreas). His research was funded by the same BIG PHARM that make the drug he was recommending. Bummmer.

Are you familiar with the 'augmentation affect of all these drugs. Many on this site have talked about it. I think actually the lower the dose of what ever you are taking the better chance of NOT augmenting.

The mental health of this disease is devastating . I had a friend say she would come over any time of night and just move around with me. Anyone like that for you.

At this point I take 1 mg of Requip and I mg of clonazapam plus doing lots of energy work with a professional. I have tried acupuncture off on for years, I really think that should help but it did not for me. However, a few people on this site did find a good practitioner and have said it was a miracle for them. Keep doing your own research, especially from Europe. Look for the cause,or what they suspect, how it is treated and print it out for your doctor. Also, if you do try the coffee and it works, print out as much of that documentation as you can and take that also to the doctor. Be your own best advocate and continue to reach out on this site. Sometime even at 3 AM, someone is on line who you can chat with. Not sure where you live, but during the summer time I take night time outside walks. Blessing to all of us, Auntie Sioux

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I live in Birmingham, United Kingdom and i dont know of anyone else who suffers with RLS like i do so yes it does feel very lonely . I have a partner who is understanding and loving but doesnt fully understand how i feel as much as he tries , which isnt his fault .

I take 1800mg of gabapentin a day and have done for approx 4 yrs now so i know that wont help. I have an irritable bladder so havent had any caffeine for about a yr and a half now. I am trying to loose weight as ive gained do much since having problems with back and joint pain. Im weaning myself off morphine sr tabs and down 10mg morning and night but was taking 40mg afew mths ago so im getting there.

Im going to see my GP in the morning and if she doesnt send me for blood tests then i will demand to see another doc. This doc is fairly new to me as my other retired so im not fully sure how her knowledge of RLS is...even tho she said there was no way my weaning off morphine had anything to do with the severe symptoms i get now.

Im learning so much about this condition that we all suffer . I just hope that one day i can tell everyone how much better i feel and that my symptoms have more or less stopped due to some miracle cure !!!!

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Good news ive seen a different gp today and had my bloods finally done ! He has prescribed me Pramipexole 0.088mg to try even tho the other gp saidcthere was no other tablets that could be prescribed. He also added tests to my blood tests which were thyroid function test and to get my kidneys checked also sovthings are slowly looking up. Hes also advised me to just stop the amitriptyline which i will tonight.

What do you think , does he seem a better gp than my last ?

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Hi, i have only just read up on your post and the comments. i dont come on here as much as i used to. So you have been weaning off the Ropinerole as it sounds by keep increasing it your symptoms have just got worse. I hate to say this to you as i know you are desperate , but when you augment on a dopamine med like you seems to have taking the ropinerole. then its advised to not try another dopamine med like your doctor has by giving you Pramipexole . When you augment on a dopamine med, then taking another dopamine med means you will still just augment. :(

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I am wondering if anyone else has felt like i do from taking Pramipexole. I began taking them Friday when i stopped my Amitriptyline 10mg after 5 years, however i have had a strange sensation over most of my body. This can only be described as little prickles all over and it often makes me itchy, the only way i can stop it at night is if i take codeine. I dont know if this is normal even tho i have read the side effects. It did say to seek medical advice immediately if you have itching . I would be grateful if someone could help

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