the curse of lifelong RLS…

[soundofmetal]

I have had RLS for 33 years, I am 63 now with two grown up daughters.

My symptoms first presented when I was pregnant, they were annoying but relatively intermittent and manageable - this is how it continued for many years with symptoms presenting during the night. I coped without medication, massaging my legs, using leg exercises and walking up and down the stairs countless times when symptoms were bad.

I remember the first time I went to see my GP, at about age 45, knowing I had RLS and wanting to have a blood test to check my iron stores - he said ‘what is restless legs, what do you mean by that’ …. I eventually had the blood test, ferritin was low at 19 ng/ml and, refusing an iron transfusion, he prescribed a course of oral iron which I took for many years.

At my request when I was 54 a kinder GP referred me to the neurology department at Kings College hospital London. A consultant working under Professor Ray Chaudhuri initially prescribed more oral iron and Clonazepam 500mg twice daily no more that three times a week, I eventually became habituated.

Three years ago, at the age of 60, I got to see the professor himself and he advised Dopamine Agonists , either Ropinirole or the Rotigotine Patch, despite my ferritin being way below 100 my request for an iron transfusion was refused. I’m a life long vegetarian and my iron stores have always been low.

I ignored his advice for fear of augmentation and my RLS has worsened - naturally and enormously - over the last three years. During this time I went to see a haematologist consultant privately, he approved an iron transfusion - Ferrinject 500mg over two sessions and my ferritin increased to 202 - sadly this did not improve my symptoms. We had a second go at it with similar results.

He subsequently referred me to a private neurologist who prescribed Gabapentin, this didn’t work for me and I now take Pregabalin 300mg at night with 1mg Clonazepam. My symptoms are still bad.

I have just requested a full iron panel to see how things are and I’m now finally considering the rotigotine 24hr patch as I am feeling quite desperate. I read that despite the risk of augmentation, I could be lucky with maybe 10 years of use before augmentation occurs. I can’t really see any alternative with the exception of Opioids which seem to be a last step approach to save for ‘later’ - I’m hoping that this will be a good choice but would appreciate and be grateful for any feedback.

[SueJohnson]

I would first try increasing your pregabalin. The maximum is 450 mg and if needed you could go up to 600 mg. Don't go on the rotigotine 24hr patch. You might get 10 years, but you might get only 1 year. And if somehow you did get 10 years it would be hell to come off it, much harder the longer you are on it.

Instead if the pregabalin doesn't work, don't be afraid of low dose opioids. Many on this forum use them with great results.

By the way if you ever decide to come off the pregabalin do so very slowly to avoid withdrawal effects. If you do it slowly you won't have any.

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, eating late at night, 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, 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.

[soundofmetal in reply to SueJohnson]

Thank you so much Sue for your valued advice. I will aim for the increase in pregabalin as a first step.

[Joolsg]

Prof Chaudhuri should not be prescribing dopamine agonists. He is aware of the high rates of Augmentation. He also refuses iron infusions because of the risk of anaphylaxis. Newer formulations are much safer, but King's RLS team don't seem to have read the research. I'm glad you ignored his advice.Iron infusions work for 60 % but you seem to be in the non responding 20%.

I am 63 and, like you, iron infusions didn't make any difference to my RLS.

After years on Ropinirole, I went through withdrawal and started Oxycontin 25mg and pregabalin 150mg. I wasted 5 years on these meds, thinking there were no other options. I still had very severe RLS. Prof. Chaudhuri wanted me on Rotigitone and said there was no other option.I refused as I knew Augmentation would happen again very quickly. I arranged an iron infusion via my GP and my local hospital. My ferritin increased to 785, but I still had severe RLS.

I asked him for Buprenorphine. He initially refused, but after I sent more info, he sent an email to say he would have no objections if my GP agreed. Luckily, she did.

Buprenorphine stopped RLS the first night. I've been taking it for 2 years at the same dose. Zero RLS, night or day.

Recently, a top MS neurologist has posted that he prescribes methadone for severe RLS.

Methadone and Buprenorphine are the two most widely used opioids for refractory RLS in the USA. Like you, I was reluctant to take them. But my life has transformed. I am free of RLS and get 8 hour's sleep every night.

I understand you are wary of opioids, but low dose Buprenorphine has been miraculous for me.

Read the Mayo Algorithm, RLS UK website, and the Massachussetts Opioid study. The Massachussetts study shows low dose opioids are safe, effective and do not lead to addiction unless there's a history of abuse. Tolerance doesn't seem to happen either, with most people staying on the same low dose for years

[soundofmetal in reply to Joolsg]

Thank you Joolsg for your kind and valuable advice. I remember seeing a short video a while back about a lady taking Buprenorphine, was that you? I will review the Massachusetts research study and try to understand opioids more.

[Joolsg in reply to soundofmetal]

Probably! I took part in a video for BBC Reels last year and talked about dopamine agonist withdrawal and that I had found a solution through research and this forum.I thought the BBC man was calling via zoom for an initial chat. I didn't realise it was for the final video. I would have glammed up a bit if I'd known!

[DicCarlson]

It's the iron. Keep the oral supplements going. Consider a "gut connection" - perhaps inhibiting iron absorption - also supplements to bypass the gut completely - PatchMD has a ferrous bisglycinate patch.

ncbi.nlm.nih.gov/pmc/articl...