On the cusp of doing myself in! I can't take much more. Walking all night and the day now I'm exhausted.. Off Ropinirole which I had been on for 4 years with no problems until I needed much more to help sleep. It took me weaning for15 months. The reduction of the restless legs is in fact much worse. I took last the 1/4 of 25mg the past 12 weeks ago and still in the same boat. I have tried Krakom..uk. dreadful raised itching rash neck and chest that lasted for 3 days with that plus RLS I was in more trouble than ever.
I saw my GP a few months ago who prescribed gabapentin a very low dose which gave me headaches, so she prescribed Pregabalin 25mg twice a day. No help at all. I saw her two days ago and altered to one tablet am two at 6pm to which has no so far not helped. I know it's early days but if feel I cannot wait for any more meds which may or not help me.
I have had 2 strokes since reducing the Ropinerole. Should I retake this problem meds to save my sanity which may not be effective now, is it worth it after so long to get off it?
You can tell I'm at my wits end pacing or jumping legs up and down is so exhausting. I'm 82 and waiting to check out of this dreadful uncomfortable and painful existing life.
I have the means so to do. I was a Psychiatric Nurse Tutor so I'm so lucky as in times in the past I would have been confined in a Psychiatric locked ward and hanging myself would have been the only way to end it. So easy now.
Any other unfortunate fellow suffers can offer some consultation to me. God bless to all of you in much the same situation.
Lots of love
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Nightwalker999
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I am so sorry to hear how badly you are being treated by your doctors.Gabapentin and pregabalin take at least 3 to 4 weeks at full dose to be effective.
Here is the medication table in RLS UK setting out average and max dose.
25mg twice a day is ridiculous! You take pregabalin at night only to cover RLS and the average dose is 150mg.
Please get in touch with your GP and show them the links to the Mayo algorithm and RLSUK website.
You need a full panel fasting blood test and, if necessary, an IV iron infusion to raise your serum ferritin above 100, preferably 200.
If pregabalin (up to 300mg) doesn't help, your RLS is refractory and you will need a low dose opioid. Tramadol, Oxycontin or Buprenorphine at low dose are very effective and do not lead to addiction or tolerance in RLS patients, unless there's a history of abuse.
Please do not go back on Ropinirole or other dopamine agonists as they will just make the RLS worse again.
Stay strong and get another appointment asap and fully discuss the pregabalin and the correct dose and timing for RLS.
As you augmented on Ropinirole, tramadol will likely be ineffective because it's the only opioid to also cause augmentation. Sadly, it just doesn't work for many after Ropinirole/Pramipexole.I hope you can get an increase in the pregabalin dose and if you are not given a short term course of Oxycontin or codeine or Buprenorphine in the meantime, get hold of some codeine and paracetamol ( solpadeine Max) as the codeine will help a little.
Hi I have codeine and paracetamol, doesn't help at all. I don't think my GP will go for either of the other meds but I'll ask. Thank you for your support. X
Hi Nightwalker999,I'm sending you my love and support, please please get back to your gp and shout the surgery down until they listen to you,I've been where you are now but listen to the great advice on here and you will feel better.😘
Hello Nightwalker - I am so sorry to hear how much you are suffering. RLS is truly the most devastating ailment and it is so hard for us sufferers because of the lack of knowledge amongst the doctors who should be helping us. I have other fairly major medical issues and I always say if I was granted a wish to get rid of one of them it is the RLS I would choose. It eats into the whole of one's life over the years.
Others are replying to you to give you advice on what you must now do. I am just sending you love and support. Certainly I do not think I would be here now if it was not for oxycodone/naloxone as prescribed by Professor Walker. I got a telephone consultation with him and he is really helpful.
I can see from your post that you held a very responsible position in the past and I am sure that you are a very strong person. Things will definitely improve for you. I am not as knowledgeable as the others on here but I do agree with Jools and Sue when they say you would need an opioid to see you through.
I agree with Joolsg except since you are thinking of taking your life, I would suggest asking now for a low dose opioid to tide you over until the pregabalin starts working. Please hang in there. It will get better. 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.
Hi Sue I have followed your advice to the letter for a very long time. I eat green veg, eggs, avocado, tuna, oats, apples, blueberries, kiwi, 1-2 pieces only before 12 mid day, milk, filtered water and tea Iron meds, mag citrate, coQ10, D3, zinc & cardiodefence.
Dear Nightwalker, I really feel for you!! I get very restless from apples. I would avoid them. Also pears, banana’s, strawberries, grapes, raisins and balsamic vinegar. Other triggers for me are margarine, mayonnaise, onions and garlic. Be careful with any processed food, flavourings and artificial colourings. Contrary to what everyone says here on this forum, I am on a combination of 0.5 mg Mirapex prolonged release, 2 co-dydramol (10/500) and 0.5 mg Clonazepam plus 1 high strength Senokot to help with constipation. It works for me. A hot bath before bed relaxes me. I wish you all the best.
Hi Felicity thank you for your message. Apple's do affect me, so I intend to cut them out. Bananas and onions also. Thank you for your support Felicity. God bless. X
I’m so sorry for your suffering. Withdrawal from a Dopamine agonist is awful, having come of Pramipexole after 6 years. Gabapentin and Oregabalin didn’t give enough relief to tolerate the considerable side effects for me.
Have you tried CBD/CBN with THC. Itake it occasionally when on vacation and it works very well. It helps me unwind my mind as well as stops the RLS. If my mind is wired it Amos up the RLS tremendously. I also do QiGong routines designed for sleep, take a hot epsom salt bath before bed. I use TNS on the legs and can turn that on whenever I need to.
Sue helped me too: I walked day and night as many as 5 to 6 days in a row with no sleep. My Gp took one look at me and finally realized this was not a joke and when I told him people like me kill themselves over this disease, he finally put me on 10mm x 3 of Oxycodone. I no longer walk long hours still walk a lot and at almost 72 that is very difficult.
I was walking 5 to 6 days not being able to sit, lay down or in my case lean on anything, I got sore sore in my legs could hardly move, so I can relate to you. If you can, I would if they let me, go on a 12 hour opiate, Oxycodone extended or methadone. I was on Opana 12 hour 4 or 5 years ago with really good results. My Gp says he is not comfortable giving me infusions, or a 12 hour release opiate. It just kills me that the medical world is so far behind this disease. Hope you get squared away, not to many things worse, mine attacks me every 8 seconds 24 hours a day and it gets worse from there.
You are getting the best advice from Jools and Sue: I can only add best wishes and the belief that it can get better. Like you I had a bad time on statins after a TIA two years ago, but am - touch wood - back clear of RLS symptoms.
I read that you were at least briefly on Simvastatin and various other drugs after your TIA, but following advice on this forum about meds that triggered or exacerbated RLS you took yourself off them. In some senses you were lucky to get off quickly: it was months before I realised what was making my RLS so much worse!
That's not to say that statins or other anti cholesterol drugs don't have ANY place in post-stroke treatments. After the statins I was on ezetimibe for quite some time. But they do tend to be over prescribed without consideration of other side effects.
You have now found how little doctors - and most neurologists! - know about treating RLS. Hopefully if you show them some of the advice given in these Replies about doses and meds you will get some real relief quickly!
Thank you for your support Chris. I will do as you advise . If only Drs, families, relatives, and/or friends experience this condition, the would appreciate how difficult it is to live with. Bless you x
Hi Chris,Just read you were having problems with statins and RLS and were also given ezetimibe. I was given atorvastatin which caused aching joints, so stopped after a week . Then given ezetimibe which I've taken for about a year. RLS has worsened, hardly any remission from it. The lipids consultant is determined to reduce my cholesterol and in May 22 prescribed rosuvastatin twice a week for 8 weeks to see effect. After the eight weeks my wrists started to itch and the skin on my palms started to peel off. Since then I have been struggling with different itchy pink rashes all over. I'm trying to decide whether it's the combination of ezetimibe and rosuvastatin that caused what the consultant called this 'immune response. May I ask did you have any rashes with ezetimibe? How did affect your RLS?
Hi Owl. Atorvastatin and - to a lesser but still significant extent - rosuvastatin both made my RLS much worse, but also left me feeling very tired and lethargic with aching limbs. I was on them for months in 2021 before I realised they were what was making me feel so bad.
My consultant in Oxford, after quite a fight, said that ezetimibe was the only alternative. It didn't give me RLS and no rashes. Common side effects are diarrhoea and flatulence, which I did suffer from. However, perhaps relevant to your case, the BNF lists 'skin reactions' as a side effect 'frequency not known'.
Other possible alternatives to statins, which I haven't discussed with my doctor as I've only heard about them more recently, are: 1) bempedoic acid, which works by reducing the production of cholesterol in the liver, and 2) fenofibrate, which acts by decreasing serum triglycerides.
I don't know whether either of these might work for you - talk to your doctor. Good luck.
Just want to add to the support, although it will not help you through tue dreadful night (and days?). I remember well the nights when RLS was almost relentless. Maddening and devastating. The only sane way out short time seems indeed an opioid. Joolsg has given you the link to the updated guidelines in The Mayo Clinic Proceedings, but there is also the 2018 paper in the use of opioids for RLS: mayoclinicproceedings.org/a...
I really hope you will have a sensible doctor who is willing to listen and read and take appropriate action. I also hope that either oxycodon or buprenorphine will work for you. if indeed only short term until you sort out the pregabalin dose. Hang in there, it will get better. Of only I had better suggestions to distract you in the meantime.
Thank you so much for your support, I have followed the Mayo clinic advice for some years but had not been easy to get my GP to prescribe other than Ropinerole. I will follow all of your kind advice. x
I have been exactly where you are now and fully understand how you are feeling. With the help and support of Sue, Jools and those who have already replied to you, I am in a much better place. I eventually stopped all drugs. The nights without any help from drugs were long and hell. I wanted to purify my body of all drugs so I could find out where I stood. The next step was Tramadol which only worked for a short time. It seemed to help with some of the symptoms but gave me insomnia. I now take 3mg of OxyNorm and 30 mins later I can sleep. This normally gives me about an hour and half before the pain kicks in again. I then try one of the other methods like a hot bath or 15 min walk about. When the pain eases I get another hour and so on. It’s still not a perfect nights sleep but much better than it was. I don’t take the OxyNorm every night as I’m so frightened of becoming dependent and addicted. The nights I don’t take it are hard. Just writing this to you has given me relief as it’s a distraction. Sending you a huge virtual hug.
Thank you for your support it means so much. I love the hug much needed. To know that others in the same boat can offer comfort to me is appreciated beyond. Thank you again X
I am in the Uk, can relate totally to your feelings of despair. Targinact , slow release oxycodone helps me so much. It's licensed for the treatment of rls here.
Hi, you need to get back to your doctor and have him prescribe you some opioids immediately!It should stop your rls stone dead... I've been where you are myself many many times where people also view rls like a mild irritation.... Can't seem to grasp what it's like not being able to lie or sit down for (in my case) over 2 days at a time, the horrible feeling that makes you want to call it a day just to make it stop, because you're also so so tired.
Go back to your doctor and tell them exactly how bad it is and insist on a low dose of opioids.
Sending so much love and hope that you get it sorted immediately. 💜
I have every sympathy with you. I too have been at desperation point trying everything under the sun. Fortunately my GP has been patient and understanding. I needed antidepressants and we went through a number of different ones to try and avoid the awful restless legs which always accompanied them. Finally she gave me 25 mg of pregabalin at night. This did nothing at all to help. Then I tried Trazodone which others recommended but I guess I was an exception to the rule as that also sent my legs bonkers and mentally I deteriorated.
Finally the GP settled on Pregabalin alone as it is also a mood stabilser. I started on 50 mg morning and night which wasn’t a lot of help, but it has now been increased at intervals and I’m now taking 150 mg morning and 150 mg at night PLUS clomazepam 1 mg at night to help me sleep.
For the last two nights I feel as though I’ve been in heaven ! It is such a relief to have no restless legs at all and to sleep right through the night.
Hand on in there. Pregabalin will only work for restless legs at the higher dose but the dosing dosing guidelines from NICE are cautious with the elderly. ( I hated that at 72 I fall into that category.) I guess i’m fortunate I don’t seem to suffer any side effects other than being dosey a little in the afternoons. But that is worth it for the relief at night.
I really do wish you the best of luck and beg you to hang on in there.
Hi thank you for your support and reassurance that I can be helped, if I can wait until Monday when I have an urgent appointment. I've just seen I have a huge painful bruise across my right breast and across the whole of my right upper back so I need urgent attention too. Thank you NJB x
Hi nightwalker, sorry to hear about your extreme condition. I've been experiencing RLS for quite a long time but was always reluctant to use any sort of chemicals in general. However I went to see my GP yesterday who prescribedOxpola/Pramipexole and I felt immediate relief. But I think Joolsig or Sue has commented on it before so rather first read their views before trying it. Good luck.
Hi Guitarist,I hope the GP did full panel blood tests first & offered you pregabalin or gabapentin before Pramipexole? Did she warn you about Impulse Control Disorder and the very high rates of RLS worsening on Pramipexole?
Please be very cautious about Pramipexole. It's miraculous at first, but over months and years, it slowly worsens the disease until it is unbearable. Getting off Pramipexole is hellish.
The best practice guidelines in the Mayo algorithm relegate dopamine agonists for very good reason.
Sadly, most doctors do not know about augmentation or the Mayo algorithm.
It might be better for you to revisit the GP to discuss further and show her the Mayo algorithm, the RLS UK website and this article by Dr. Winkelman, a top RLS expert. I wish I had been offered iron treatment before being prescribed dopamine agonists. Raising serum ferritin above 100, preferably 200 resolves the majority of RLS cases.
When you see her ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
I remember you didn't want to take any medicine and now you have been prescribed the one of the ones we would have told you not to take. As Joolsg said a dopamine agonist (DA) like pramipexole (or ropinirole) are no longer the first line treatment for RLS as up to 70% of people on them will suffer from augmentation, which believe me you don't want. Instead the first line treatment is gabapentin or pregabalin. I strongly, strongly suggest you phone your doctor and ask that she prescribe either gabapentin or pregabalin. If she is reluctant refer her to the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin 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 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium including in a multivitamin don't take it within 3 hours of taking gabapentin or pregabalin as it will interfere with the absorption of them.
Yes I did say it. Thank you for being so caring about people you don't even know Sue. I'm seeing her again in a month time and will definitely take it up with her. God bless you.
Just another message of support from England - upset me reading this and can totally sympathise. Please hang on in there, hopefully all the good advice on here will help. Just for info , I take 300mg if Pregabalin of, all before bed. Hope you can get your dose raised.
Hi, I’m in Wales, too. Care here is awful. Just an idea but maybe you could try and point at the NICE guidelines? They do suggest oxycontin for refractory RLS and the GP might be a bit more willing to listen to NICE than to Mayo, which they tend to spit at. Print out the relevant pages because they are a bit hard to find and GP’s don’t have time to search.
As others have said pregabalin 25mg is very low dose and I believe you should look to increase that immediately and by a significant amount. I took 300mg a day and the side effects were very limited but it didn’t really do anything lower doses e.g. 150mg daily did relatively little. It’s not a contentious medication, I.e. there can be side effects but they are generally mild to moderate for most people and should you really struggle with it then stopping pregabalin isn’t a difficult process either, although like most things it’s better to phase it out in stages, at least over a week or two. I think it’s a very low risk option and absolutely worth a try. I’d suggest getting to 300mg at least, I started on 150 and then doubled to 300 a week or so later with no issues.
Dear nightwalker I have been where you are now and it will get better there's always someone here to talk to and help, now your daughters on the case im positive you are in good hands now stay strong x
I am wondering what Tramadol dose you took ? I received advice from a London Sleeping clinic and started on 100 mg and was told I could go to 400mg before changing the med!After 3 years I am varying between 2 x 50mg capsules and 3 x 50mg capsules which provide me with 6 yo 8 hours uninterrupted sleep!!!
Hello m1946I was on 2x50mg 2pm and 10pm. for a few months. Because it had stopped working I've reduced it to half until yesterday. I must be in withdrawal. Thank you go for your support. x
My empathy and sympathy is with you as I know exactly how this feels. It’s a syndrome that is SO under the radar yet so disruptive to both physical and mental health. Despite all the advice that’s out there, unfortunately there is no cure and I have tried every single thing.
Now , having gone through detox hell, it is actually very bearable. My advice to anyone is to stop taking anything at all, put up with the detox and the quicker the better. I broke all the rules and virtually stopped Ropinorol overnight. The detox took around 4 full months, no more,but at leastI didn’t waste my time dribbling it down in piddling amounts only to go through severe detox on each occasion. It was risky but my God it was worth it. Now, after decades of trauma, I can function perfectly normal throughout the day, I can drive safely ( which I couldn’t do latterly) , enjoy relaxing in front of the tv in the evening, and I get reasonable amounts of sleep. True, I still get relatively mild RLS an and PLM overnight 7 nights out of 10, but it resolves within 5 minutes of getting up briefly so I can have a cuppa and go back to bed. Sometimes I still awake with it in the morning but again, it disappears instantly when I get out of bed. I can only tell you about my own experience obviously but I despair when I read all the advice that steers folk back towards yet another medication as a “cure”. I will be shot down in flames but personally I wouldn’t touch Gabapentin again with a barge pole. Been there done that too. Ghastly! It will just cook up another problem. I am actually a retired nurse, so prone to doing my own thing as I am now so sceptical regarding drugs for this problem….no cynical actually. I have an excellent neurologist but even she believes in listening to the patient is the only way to treat this. I’ve had every test known to man too thanks to her as well, just to make sure we weren’t missing anything. Furthermore, I don’t believe that this Mayo Clinic algorithm will prove to be any better than what has gone before so I’m not going down that route. No meds for me again EVER. I know this may not seem to be any help but I came through absolute hell too and could easily imagine how suicidal thoughts could creep in, so good luck and here’s hoping that things will improve. Stay strong.
Thank you so very much. You put the case absolutely, I have not wanted drugs of my kind but desperate measures caused me to find anyway I could sleep. Walking day and night is so exhausting and difficult to function. I'm hopeful I can find an answer for me too. x
This is so interesting. Were you only on a dopamine agonist when you did Cold Turkey? What was the dose? How bad was the situation when you quit - legs only or arms and legs together? Every night and day, or only nights some of the time?
And please enlarge upon your experience with Pregabalin. An informed opinion from a nurse is invaluable.
I was on Ropinorol 4mg, but have been on every other recommended drug at some point over the years. I couldn’t stand it any longer. I had RLS and PLM all night and virtually all day. I couldn’t settle to do anything at all and spent my life pacing around looking for things to do. It was agony and hell on earth. It was hugely disruptive and totally exhausting. It affected my whole body, even my trunk and I was unable to drive safely. I even damaged a knee joint with all the thrashing around in bed night after night. I had to sleep in a separate room most nights. I wanted to scream, and completely understand when folk talk of feeling so desperate that suicide becomes an option. The sleep deprivation was off the scale and I worked shifts my entire career so was able to cope better than most folk. Pregabalin was just as bad a few years ago but honestly last year was unbearable. I was depressed, bad tempered, dysfunctional and how my husband coped is a miracle. My jerky movements were uncontrollable and detox was worth it let me tell you, but it takes real determination, as your body desperately craves dopamine and has to relearn how to produce it all over again. That’s what dopamine agonists cause. Their use for RLS should be banned. Tramadol didn’t work for me at all by the way. The thought of going down the opioid route appalls me anyway. That’s no way to plan treatment for someone’s future. They’ll be suggesting Methadone next to get us off opioids!
In summary. The dreadful treatment regimes for this are worse than the disease itself at the end of the day and the drug manufacturers must be laughing all the way to the bank. Most doctors haven’t a clue about the seriousness of it so make matters worse. Sorry to be negative overall, but I’ve proved that detox and a total wash out is possible. I’ll never allow myself to be dependent on any of these meds again, and not Gabapentin either by the way.
You are nott negative, just a realist. I have often thought of doing what you have done, but without assistance I do not have the courage. I salute you.
When I waa first put on a dopamine agonist, many years ago, I was not at the doctor for help with RLS. I was coping. But then came the drug rep and the pressure. It was lovely for about six months, then it rapidly went to hell in a handbasket. And it has been hell ever since, with little breaks.
Dear Nightwalker999, I am so sorry to hear that you are suffering so much, I am only a caregiver to my mother and can only imagine what you're going through, as there were moments when my mom wanted to commit a suicide as well from restless legs. For now what really helps her is Clonazepam. It is one of the official medicines according to Mayo algorithm, for more severe restless legs. She is on Pramipexole (0.375 g) and Gabapentin (1800g), and sometimes this doesn't help, then she takes 0.5 mg Clonazepam and that usually helps her to sleep in about half an hour. I hope you can find a solution soon ❤️❤️❤️
Hello daisydaisy, thank you for your support and recommendation. Must be so diffecult to watch mum to go through with this horrendous affliction Love and gentle hugs to you and mum. God bless x
DaisyDaisy, the .375 Pramipexole is far too much. She needs to come off it if possible, and the experience of many tells us that low-dose opioids are the only way to kick the dopamine agonists and get a life back. The current thinking from the best experts is that the dose should not be increased above 0.25 milligrams. She is probably augmenting, and that way lies pure hell. Most doctors are not au fait with the new guidelines.
You have already been given great advice. I definitely think you should get a stronger opioid to see you through. I take oramorph successfully. I'm so glad your daughter is now advocating for you. I hope you feel better because she is by your side.I 'm so sorry you are suffering so much. Please hang on in there. There is hope. Things will change. Sending love. X
There’s hope! Have your Dr prescribe you tramadol. It works. 50 mg. I take 4 per day. Morning noon dinner and bedtime. Godsend. There are several other posts about it on here and other websites. I ve had RLS my whole life. I understand how you feel. Tried everything!!! Was addicted to Vicodin and norco. Got off. This saved my life!!! God bless you
After reading other posts maybe you need a higher dose of tramadol (I take only 1/2 of what is allowed) and if you are on statins; I’m not sure what can help that! Those pains are awful my husband has to take statins but only every other day because of leg cramps and pain
Also, I’d you drink anything with Sucralose in it; that is a huge trigger Best of luck!
Hi Beiber, I have tried everything you wonderful sufferer’s has sent to me. So far nothing has helped. I have purchased Tramadol and has helped for a while until stopped working. Thank you for caring. X
RLS is often due to systemic inflammation caused y foods in your diet, mostly refined sugars and starches like refined wheat flour. Also refined seed oils can cause inflammation. I have eliminated my rls without drugs by changing my diet to reduce inflammation.
Hi, this awful disease is a lot to bear. People who do not have it cannot understand the torture.
I am on pregabalin. I take 300mg once per day and it works. I started on 75mg but that amount only worked for a short while.
The side effects are day time drowsiness and I am slightly unsteady on my feet but the trade off is worth it. Not sleeping is the worst thing.
I hope you find something to work a bit better.
I have started with a new neurologist who wants to reduce my dosage to 225 mg which I have agreed to try.
Pregabalin has a tendency towards weight gain and the neurologist wants me to lose weight as my blood pressure is elevated. I have put quite a bit of weight on since I started taking it.
It's a crazy dance. I am 58 and for me now sleep will win out.
I don't think that possible. I am in Australia and I believe it comes in 75mg increments. That's why the 75mg drop. I haven't started the reduction yet but I will update on the forum what happens. If it's not successful I can always revert back. I have 150 mg and 75mg capsules prescribed. The neurologist is keen for me to lose weight as I am extremely overweight and I think that is why she want me to reduce. I will follow what she says for now. I have been self prescribing for a long time now and my GP has gone along with it. Trying a neurologist is an experiment that I hope is successful. Fingers crossed.
It is available in 25 mg. See pbs.gov.au/pbs/search?term=... If you can't get it, you can open the 75 mg capsules and divide the dose in 3. I strongly recommend you only reduce by 25 mg at a time to avoid withdrawal effects.
Hi there Ludo, thank you for your support, so sorry you’re in the same situation. I was prescribed Pregabalin 25mg 2 daily some months ago, no help at all so perhaps with an increase it may help. x
I seriously dislike taking opioids, too, and I have tried several of them. But, at your age of 82, and all you are now enduring, they would give you your full life back. So what if you’re dependent on them for 20 years-you know? Most of them work within minutes, so the relief is just incredible. Sleep is worth anything and everything.
Sounds like you had a bad batch of Kratom-which is so too bad. I’ve had that rash from other supplements but not from quality Kratom. I know it’s tough in the UK to get it but Joolsg suggested kraatje.eu and I know members on here who used it with great success. You order it as “tea.” If you dare to try it again-it is just like an opioid. I have toggled back and forth between various opioids and kratom every day. I’m sure I would not be here without them-and so many on this forum would say the same. I’ve tried going without anything and it is almost impossible for me, probably due to all the years on the ROP and PRAM.
Nightwalker, I was where you are for years, every day thinking of - and planning for - suicide. The whole of my life stopped. No sleep, no joy, no friends, no hope, no work. Just hell.
(I confess I remain ready for suicide should everything go south again).
I kicked pramipexole with the help of methadone, 15mg, overnight, three years ago. I slept eight or ten hours every night for weeks. No withdrawal symptoms at all.
I moved to methadone as the only drug, (titrated down to 7mg per day), for one year, then to buprenorphine 2mg. (you could kick the DA with methadone for a short time, then move rapidly to buprenorphine, which is a partial agonist and very safe). (Perhaps it can be done with buprenorphine alone?)
I became depressed and sought help. I was put on oxycontin, a horrible horrible drug. Two days ago I kicked it, after three weeks of utter misery.
Now, after a long period (three years) free of dopamine agonists, I have returned to a very low dose of pramipexole, 0.125mg, plus a very low dose of buprenorphine, about 1.4mg I guess. I will use the pramipexole on and off, so as not to augment again.
I also take 100mg Trazodone at night, (a mood stabilizer, plus it takes away the nightmares and aids sleep) and Zopiclone 7.5mg (I can take two if necessary). I take half a Rivotril when I feel panicked.
I use a tiny sliver of buprenorphine sublingual if I get withdrawal symptoms during the day.
And I have started to use ginger and peppermint to help with withdrawal. I want to go natural as far as possible. I will research cannabis again. And check my iron levels.
Until two days ago I was back on the suicide trail, but I picked myself up and wrote at length to my doctor, (not the one who put me on oxy), who agrees that I am NOT a pill-seeker, (we all hate the damned meds, but few doctors will believe us, or they are all cowards who will not put the patient first). She trusts me to work it out from one day to the next. So I do that and inform her. She is thrilled by the present course.
Today I feel almost fully human for the first time in a long, long time. I slept eight hours last night. I have hope, that rare and wonderful thing that others take for granted.
Please, try to find a little energy to change your doctor. I am not sure if you are American or British, but appeal to others on this site to get the help you need. At this stage of the game, I am reasonably sure you need a low-dose opioid.
I am seventy-eight years old, so not much younger than you.
Hello, thank you so much for your support Parminter, and I’m so sorry to read of your painful journey, doctors don’t realise the torture we experience. We have to find our own way to relieve our body and minds. It helps that so many of you care so much.,God bless x
I've been there! Gabapentin was useless, Ropinerole semi-helped but made me bad nauseous. This went on for a few years. I was almost done until I found a Dr. that tried me on a low dose of Methadone. I realize some people understandably have quite the aversion to opioids, but it literally saved me. Zero episodes in the 5 or so months since and no side effects. PLUS what little info there is says there is extremely low chance of augmentation.
It’s so upsetting to read the stories of people’s lives being destroyed by this insidious disease and equally by the ignorance and lack of support from the medical profession and governments, who sanction drugs that could save the lives of so many RLS victims.
I’m so sorry to hear of your suffering. You are not alone in your despair. I can only add weight to other comments that suggest a low dose opioid. Along with watching what I eat, I am currently taking Temgesic, from the buprenorphine class of opioids. This is one of the drugs suggested by the Mayo Clinic Algorithm that other forum members have provided.
After 11 long years of various drugs (including the dreaded Pramipexole) no sleep and suicidal ideation I am finally getting back to something akin to an almost normal life.
I sincerely hope you’re suffering from this terrible ailment will end soon… X
I so feel for you!! I too have RLS and am learning from the great advice on this forum. It sounds like you've tried everything and there's not much for me to add other than I send best wishes and love from Lancashire 💐
I understand every bit of your plate. I am in my 60s but It’s just crossed my mind too many times and the lack of relief or anything that seems to work. It is a hard, hard road that we have been given to walk, and I keep my prayers and blessings with you as I do myself. .💝
Hi. I am sooooo sorry that you are in this horrible mess. I am going to be 78 and relate to how you feel. I was having so much trouble sleeping and being awake and I have tons of autoimmune diseases. So I have felt similarly. I would suggest you do what I did.
I purchased some CBD oil over the counter. I do take Gabapentin (500mg over the counter) at suppertime, and then when I go to bed I wait until my legs start to flare and I take 3 drops of CBD oil under the tongue for one minute. It is a 30ml/600 mg per bottle so I don't know how much is in the three drops. But it lets me sleep for 3-4 hours. Then I get up and take 3 more drops. If it is a bad night I might repeat it again. It is not perfect but it does give you some relief. And everyone is different so you might need more or less. Same with the Gabapentin. It seems to me that the GABA and the CBD work together to make me more sleepy and get rid of the awful tingling creepy achy sometime painful feelings in my legs. As I say, it is not perfect, but I now have enough relief to feel positive again. You know I can actually lay down after I take the CBD oil and wait a few minutes and actually feel my legs change. It can be that immediate because you take it under your tongue. Good luck.
I know exactly how you feel and I’m so sorry your going through this and feeling so low .Like you I have been in the depths of despair with it .Please don’t do anything that would hurt yourself get your dr to go with you to see a dr and explain and you sound like your depressed maybe antidepressant would enable you to cope . Sending my love and hugs and wishing you everything wonderful . 🙏🏻🙏🏻🙏🏻🥰💕
You've obviously received lots of help from others on this forum, and I want to add my heart-felt support as well. We all know how horrible this condition can be. Please know that I'm thinking of you and sending best wishes for speedy relief! 🙏
Needless to say, I know the difficulties of life with RLS. I learned to have 10 to 11 hour nights by saving many of my chores for the middle of the night. When I wake up to walk, I do a chore, sweeping, dishes, cleaning the counter or something that replaces walking. I go back to bed and sleep awhile till the next round.
I get 6 hours of sleep by this method and sometimes more if I doze during the day. No meds. This might help you get the rest you need. It has helped me. I'm 76. There are rare nights this does not work, but mostly it does and I've managed to stay OK.
Hi BoldMove, thank you so for your support, I’m so sorry to read you’re in the same boat but pleased have found a way to relieve the night agony. God bless x
go to RLS.org and find a RLS specialist near you. It has a list of other drugs like Lyrica as and Buprenorphine that also work for many
Many only Methadone works, hope you don’t have to be on it. Side effects are terrible. I hate this stuff but nothing else worked. The Lyrica worked great but the side effects were as bad as RLS.
Opioids only thing that really works. It's not complicated. I take 10mg hydrocodone 4.5x /day plus 300mg gabapentin 4x /day to supplement. I don't like the gaba, but it does help and reduces the amount of Hydro which keeps the feds happy. I'm blessed to have a primary care who has done his due diligence and has treated me for 40 years.I am 67 and would surely be suicidal w/o my meds. Find a doc who will try the opioids for you.
I never slept for years. Tried sleeping tablets, melatonin etc but my restless legs were a nightmare. Had a private blood test fir my thyroid levels and it came back with iron and vit b12 anaemia. I had intensive doses of each vitamin from doctors for a few months and now I’m on daily doses. My restless legs are better and my brain is less chaotic at night. I’ve also been to meditation classes since may last year. It was my last resort and I can stay with all certainty that it has improved my situation immensely.
I notice you ferritin was very low a year ago and you were taking iron tablets. Ferritin is very important for RLS too. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. What is your ferritin now? Also I didn't see any mention of any medicines on your profile for RLS. Are you taking any? I hope you are no longer taking melatonin as it makes RLS worse for most. Improving your hypothyroidism should help your RLS.
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, playing and listening to music, meditation as you found, creative hobbies and yoga.
Joolsg is certainly the one to listen to!!! We have ALL been there, and I remember telling my regular GP many many times that I wanted to do myself in. Then I finally found an expert who also had RLS and it changed my life. So, there is light at the end of the rainbow, truly, and the low dose opioid was mine, along with a low dose of Xanax. You just have to keep trying different concoctions to see what works for you, along with getting that ferritin up! Remember, you are NOT alone!
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