I have been diagnosed by the Sleep Clinic at Royal Brompton Hospital with severe restless legs and severe PLMD. I take 250 pregabalin and 375 micrograms clonazepan every night
Despite this medication, two or three times a night ,not just my legs but my whole body jerks and twitches and I have to get out and walk about 30 minutes to enable me to get back to sleep for another hour or two
I have suffered with bad knee pains for some time and at last I have an appointment for a knee replacement operation next month.
But I am scared. And would much appreciate any advice from the members of this forum
I have heard that there are some drugs which anaesthetists use for operations like this which actually make RLS worse. Please tell me what drugs will not make my legs worse
And after the operation, the healing process for a new replacement knee start swith gentle careful walking on crutches .Followed a week or so later with gentle physiotherapy to loosen up the new knee and embedded it well into the leg
The last thing you want is this careful gentle healing process to be interrupted every night by compulsive jerking and twitching from my RLS and PLMD
How please can i so manage my legs and body that it does not destroy this gentle healing process?
Any advice would be most most welcome.
Thank you
Written by
thorp
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Tell your doctors and anesthesiologists about your RLS and its symptoms and that you need your medicine. Also talk with the patient representative ahead of time. It is a good idea to bring your own medicine, but don't tell them you have it since they will insist on giving you medicine prescribed by the hospital. That way if they don't follow through you can take the medicine you brought. If it would be difficult to get to it, have a friend bring some. Tell them not to give you any sedating antihistamines or sedating anti-nausea medications. Instead insist they use Zofran for anti-nausea. You can download the Medical Alert Card that you can show your doctors, that tells them about the condition and what will happen after surgery and what medicines to avoid at rlshelp.org/ although you will need to join the RLS foundation. An international membership is $40, but they have some good information on it and you get their monthly magazine. However the safe antidepressants listed on medical alert card are not antidepressants: Lamotrigine, Carbamazepine, Oxcarbazepine. Also, I would increase your pregabalin by 25 mg every couple of days until it controls your symptoms. The maximum is 450 mg. And even if it doesn't control your symptoms, you will want to take it when you are in the hospital or you will have withdrawal symptoms. If you get to 450 mg and it doesn't help, you will want to very slowly reduce it or you will have withdrawal symptoms. If you do so, you won't have any. But I wouldn't do this while you are recovering.
Sue has given you great advice and information about your operation and safe anti emetics.
Discuss fully with the surgical team in advance AND get it in writing that they'll give you Zofran or a safe alternative. I found that hospitals in the UK don't take too much notice and ignore the information you've given them. I had to discuss safe anti histamines before my MS drug infusion, the head pharmacist came to discuss with me and when I turned up for my IV infusion, he had failed to order the safe version.
It also sounds as though your RLS is still very severe, around 36 or 37 /40 on the international RLS severity scale. You are on pregabalin and clonazepam but still have severe RLS. Are you under a neurologist in the UK or does your GP treat you? Were you on Ropinirole before pregabalin? If so, pregabalin and gabapentin often do not work for many. Dr Buchfuhrer says he thinks it's because the dopamine receptors have been badly damaged
You may find that low dose opioids work better to control your RLS. Also, you will be given opioids after your knee replacement and they will definitely help your RLS
UK doctors are not taught anything about RLS sadly so we have to research everything for ourselves. UK doctors are against opioids for good reason. They were overprescribed for pain for many years as a quick fix and unfortunately, opioids for pain lead to tolerance and the dose has to be increased to achieve the same result. Also, the Oxycontin scandal in the USA resulted in many deaths and people becoming addicted to opioids.
However, opioids for RLS work in a different way, are used at much lower doses and do not lead to abuse unless there is a history of addiction. Tolerance is also much more unlikely
Dr. Winkelman has been running a 5 year RLS opioid study to show that low dose opioids are safe, effective and do not lead to addiction or tolerance. Sadly, most UK doctors refuse to consider US research! I still print it off and show to my GP along with the Mayo guidelines, as they are clear - low dose opioids work for refractory RLS
I do have personal experience. I used Tramadol during withdrawal from Ropinirole but it didn't help at all, probably because it also causes augmentation
I then used pregabalin and Oxycontin for 5 years, but the Oxycontin clearly caused mini withdrawals as it didn't last for more than 4 hours. I had very severe RLS and was woken 2 or 3 times every night to walk around for 30 mins.
I was seriously considering suicide as I seemed to have exhausted all drug options. Then Shumbah posted that she also had been on the same drugs as me and was also seriously considering suicide but as a last resort, visited Dr. Glen Brooks in New York city. He prescribed Buprenorphine. Shumbah posted about it on here and how it had stopped her RLS completely, she was sleeping every night and had been able to stop her high blood pressure meds as she was sleeping.
I switched to low dose Buprenorphine (0.4mg) and have slept 8 hour's every night since July 2021. With Zero RLS, night or day.
Quite a few others have switched to Buprenorphine and most have had the same miraculous results
Prof. Chaudhuri at King's was so shocked at the result that he said he wants to do a UK trial of Buprenorphine but needs £100,000 to cover the costs.
Hopefully, the money can be raised, the trial carried out and Buprenorphine licensed for RLS in the UK.
In the meantime, discuss with your GP and show the links to the Mayo guidelines and Dr. Winkelman's study and hopefully, he/she will accept you still have severe RLS and need opioids to have quality of life.
Have had RLS since early childhood and have tried every known treatment. The previous drug was Tramadol which worked for awhile but was soon augmenting. I also made crazy decisions on it like almost buying a horse!
After reading the information on this site re, methadone and sharing medical studies etc with my GP ( my neurologist not really interested) for at least a year, he finally let me try it. Life changing!
I had also come to the conclusion that I would have to take my life as I could no longer stand walking 6-8 hours a night, never able to sit to read or watch TV to at least help the long night pass. Just walking in continuous circles on a beaten path through my house in the dark. Each morning I would brighten up and get on with life but night was always waiting. My Dr knew me and must have realized that I really had come to the end of what I was able to deal with ( 63 yrs old now) I also have painful Fibromyalgia.
Started on 1mg and gradually upped my dose of Metadol (methadone) to 3mg over a few weeks. And the RLS symptoms were gone! I can take flights for 8 hours at a time, relax at a movie and even if unable to sleep at night, I lie there grinning because I can lie there and be still! No memory of that ever in my life. Haha!
I hounded my doc till he finally said ‘OK let’s try this’ (in Canada Methadone is only allowed for Cancer pain and Heroin withdrawal) He took a risk and I will be forever grateful. I hope all RLS sufferers will soon have access to some of these life changing treatments. It makes me feel sad and angry that so many are still suffering when there is hope. It has been nearly a year for me and my dose has stayed the same with only rare twinges of RLS. If I drink wine or use too much Sucralose etc then I feel a ghost of a tickle. Hoping many of you can get on this treatment soon T
That is so wonderful to hear. I agree with you. I lie in bed with zero RLS and just wish others could get the same miraculous result!
If doctors could see beyond their inbuilt prejudice to Methadone and Buprenorphine, hundreds of thousands of severe RLS sufferers would benefit. Obviously there will ge many who can't take these drugs because of other comorbidities or severe side effects.
I forgot to add that if you need a neurologist to approve a low dose opioid prescription, you could ask to see Prof. Matthew Walker at Queen Square in London.He does phone appointments and will prescribe iron infusions and low dose opioids for RLS. His NHS waiting list is long so if you can afford it, see him privately
Thanks for the reply I arrived home from London 20 days ago but sat beside a cougher and caught a bug on the plane Just recovering now from the sorest throat etc I can remember! But at least I could lie still and sleep
Do you mean this Doctor can prescribe overseas or just for UK residents? I am very interested as my prescribing doctor will be retiring soon Thanks again!
So sorry I erroneously thought you were UK based. He can only prescribe for UK patients.Also sorry you have caught a lurgy on the flight. Check it's not Covid. 1 in 25 have it in some UK areas. The Lateral flow tests ( RAT) don't show up unless you do under tongue, cheeks, tonsil area and nose.
Well then, you could try increasing it by 25 mg every couple of days to 300 mg. If that doesn't work and you need to come off it, do so very slowly so you don't have withdrawal effects.
I have the same concerns about a knee replacement in a few weeks causing some complications with my severe RLS. Replies by Sue Johnson and Joolsg were excellent in my opinion. This forum is lucky to have their input. We need to educate the other doctors.
Joolsg was so right in questioning my trial with a Neupro patch several months ago. That was not the answer due to further augmentation after 4 months and another miserable period of weening off it. It seems so ironic that the dopamine agonists work so well but eventually turn to poison. Didn't superman have the same issue with Kryptonite?
Well, I can only tell you what happened to me. I too was very apprehensive about the RLS and PLMD both during and after my knee replacement. (From what you say, it would seem that my RLS, although bad, is not quite as bad as yours).
I told the Doctor and anesthesiologist prior to the surgery, but nonetheless, I guess it did cause them problems. The anesthesiologist came in after and said "You weren't kidding about those legs, were you?" I guess they had to give me more sedation or whatever during the operation.
Anyway, I did have access to my Mirapex (well over the recommended dose, as it later turned out) throughout the hospital stay and after, although they added many other things for the first little while, as I reclined on the couch, did knee exercises, and was taken care of. As I recall, the RLS was not a problem. In fact, it appeared to be very much under control during this whole time, due to the other drugs I had been given for this first phase of recovery.
As I began to reduce these other drugs (Tramadol, etc.) and began to move around more, this is when my problems began. But it was not the RLS. I began to feel increasing pain in the left lower back, which at the time, and to a certain extent, I still do attribute to the way I was reaching out for things as I reclined on the couch, etc. - ie. overcompensating by using my left side to save my right side. It did later result in a diagnosis of stenosis, which has now become another major problem, in addition to the RLS (for which I am now trying to get off the Mirapex I was taking and am in the long and onerous task of switching to pregabalin, either temporarily or permanently). Anyway, just be aware and careful of your movements while you're quite drugged and don't feel anything, so that it doesn't come to the fore as you come off those drugs and are able to feel pain again. Maybe more attention to strengthening exercises before the surgery would help. Good luck with it!
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