I have suffered with Restless Legs for at least 35 years. I have always known that many people who suffer from MS also suffer with Restless Legs. Over the Christmas period my daughter was talking to a relative of her husband’s, who work at our local MS Centre. She somehow got round to telling the relative about my RL sufferings and it was suggested I talk to the people who run the centre. This I did today and I am so pleased I did. I was listened to, and I certainly listened! I am going to have an induction session in the decompression chamber (I think that’s what it is called??) next week. As I have tried absolutely everything over the years I am very excited to be having the opportunity to try something new to me. I was told that most of the MS patients have a lot of help and relief with their RLs.
I would be very interested to know if any RL sufferers have tried this therapy?
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Mulberry100
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I too have MS and refractory RLS. I don't live near a therapy centre with Hyperbaric oxygen but it is supposed to help bladder & pain so it may help by oxygenation of the blood, helping iron to the brain.Let us know how it works for you.
Luckily, mine is now controlled with Buprenorphine.
Thanks for reply Jools. Sorry my post must have been misleading, as I don’t have MS just severe restless legs. I can’t imagine having MS as well as restless legs, it must be horrendous, I truly feel for you and others that do. I am keeping an open mind regarding the oxygen therapy but will try anything in the hope of some relief! I have signed up for 20 sessions which need to be given in quick succession ie minimum 3 times a week, preferably more.
I have asked to be tried on Buprenorphine on several occasions without success, but will continue to push for it.
No problem, I would actually rather be rid of the RLS than the MS, I think!! Anyway, would be interested to hear about any oxygen therapy you have. I’m West Oxon, so not a million miles away if you ever want to meet. X
GP will be very reluctant to prescribe Buprenorphine because if anything goes wrong ( severe side effects etc) the GP can lose licence to practise because opioids are not licensed for RLS.That's why we need proper clinical trials.
Prof. Chaudhuri at King's College has agreed to do trials if I can raise £100,000.
I have written to several funding places and big pharma to no avail. Buprenorphine is dirt cheap in.tje UK so no money in it for pharmaceutical companies.
Have you considered seeing Prof. Walker at Queen Sq, UCL. He does phone appointments and will prescribe Buprenorphine. However, 2 or 3 of his recent patients had side effects so he may be reluctant to consider.
You could point out that many of us have overcome the side effects and are doing brilliantly on it.
I'm happy to forward the email chat between Prof. Chaudhuri and me where he says he has no objections to Buprenorphine as long as my GP agreed to prescribe. It helped persuade my GP to give me a 3 week trial. The results were so spectacular that she was happy to keep prescribing.
Thanks again Jools. I have been in contact with both Prof Chaudhuri’s office and Prof Walker’s. I didn’t make an appointment because I was waiting for one on the NHS at Southampton and because Prof Chaudhuri would have cost something in the region of £800 and Prof Walker £450 I decided I would wait until after my NHS Neurology appointment. I am still waiting for my patient copy of recommendations following my visit. My GP has heard and I have a telephone appointment with her on Monday to discuss the recommendations. Whilst waiting I heard about the MS Centre, virtually on my doorstep, so decided I will first see how that goes. To be honest I am almost frightened to take anymore tablets as I take so many.
I would be interested to see the email chat you have had with Prof Chaudhuri as I feel Buprenorphine may well be my last hope of some relief.
I’m not sure if I am using this thread properly, but wanted to ask Joolsg if she would kindly send me the email chat she had with Professor Chaudhuri re him prescribeing Bruprenorphine as I am having a telephone appointment with my GP tomorrow. I don’t expect to receive anything from you by then, but I will be booking a face to face appointment when I will really be pushing for a trial. I really feel it’s my last hope and if she will not prescribe I guess I will have to see one of the Professors. I totally understand if you would prefer not to share the email. Thank you.a
thanks very much Jools. I’m not holding my breath but am going to give it a go. The last two nights have been the worse I have ever experienced and I’m not sure how much fight is left in me! Do you happen to know which sleeping pills are ok to take?
Like you , Mulberry, and Joolz, I too have both MS and dreadful RLS. Am currently taking iron to see if any improvement (thanks to this site and sympathetic medical staff), will be checked in April. Interesting about Joolz’ buprenorphine too.
Anyway, would be really interested to know if the oxygen therapy has any effect? Are you both based in the UK? I’m in England in Oxfordshire. Thank you and all the best.
thanks for your reply, as I have said to Jools, my post seems to be misleading as I don’t have MS, just severe restless legs, I cannot imagine suffering from both and have sympathy for those who do. I will definitely feed back any information/results from the oxygen therapy. I live in Wiltshire, between Bath and Salisbury. I often wonder where everyone lives as it would be great to meet up with fellow sufferers, meanwhile, I get so much comfort from this site, knowing I’m not alone and being able to access such valuable information.
Thanks. How is the pregabalin working? It did nothing for my RLS. If it is still not helping you should ask your GP to consider low dose opioids. I wasted 5 years on Oxycontin and pregabalin with severe RLS and was told by Prof. Chaudhuri that there was nothing else they could do and 4 hours disrupted sleep was the best I could expect. Thankfully Shumbah posted about Buprenorphine and I pushed for it. For me, it has been life changing.
Thank you Joolz, I am sitting here now nearly in tears - rare for me - because of RLS all night and right now. The Pregabalin did work at first, but I put on loads of weight and it now seems to have worn off anyway. I seriously wouldn’t wish this on my worst enemy! Does the Buprenorphine have any side effects for you? Really appreciate this input.
I am so sorry to hear that the Pregabalin isn’t working for you now, I found it didn’t work for me too. I do have some pathetic relief using Gabapentin but am now on 1800 taken in 3 x 600 doses, plus Tramadol and having experienced hideous augmentation from Neupro patches will not increase further. I have on many occasions spent hours in tears begging for help from some imaginary saviour! I have a friend that suffers from severe Lupus and occasional restless legs and she says she would suffer twice the symptoms of Lupus if she could get rid of the RLS.
I wish I could find a GP that suffers from severe restless legs, just one GP that knows what we go through. There must be some out there somewhere, surely they should be pushing for more understanding and training.
It sounds as if you need someone to give you a bit of a boost! I too read of Shumba's wonderful buprenorphine and my GP (in Australia) was happy to let me try the patch form which is used here for pain. The other forms are hard to get (Shumba is from Australia too) so he thought we could trial the Norspan patch and see how it went. That was nearly three years ago now and I went from horror RLS nights to mostly very well controlled RL symptoms. I'm currently having a bit of a blip as Christmas seems to have caused and increase in my sugar consumption and (I think) increased my symptoms. Of course, I deny all culpability for the increased consumption!
In terms of side effects, I tend to suffer from alertness on opioids and found that this was a huge side effect. However, after nearly two years I read on here that gabapentin could help with brain alertness and my GP allowed me to try a low dose. I've settled on 400 mg and now when my legs aren't struggling with sugar, I get to sleep and dream!!! so that issue is solved. Constipation can also be an issue as with all opioids and if needed I take Movicol. However, the magnesium I take also helps as well as the sugar free liquorice which is a bit of a treat, also helps.
I am blessed that I don't suffer much from side effects on most medications so this is the limit of mine on buprenorphine. Others have had nausea etc but Jools will probably respond to your post.
Good luck with your search for a strategy to ease your legs. I really feel for anyone with this syndrome and I send you encouragement and strength and supportive hugs albeit virtual ones.
Take care and know there is a world of people out here who are with you all the way.
You might want to try switching to gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Multiply the pregabalin amount by 6 to get the correct dose. So 1500 mg of gabapentin would be equal to 250 pregabalin. Take 600 mg 1-2 hours before bedtime. Then since you need more than 600 mg take the 2nd 600 mg 4 hours before bedtime as it is not as well absorbed above 600 mg. Then since you need more than 1200 mg, take 300 mg 6 hours before bedtime. Ask your doctor for 100 mg capsules and increase it by 100 mg every couple of days. You will probably just need another 100 mg for it to work.
My RLS went from 36/40 on Oxycontin and pregabalin to 0/40 overnight on Buprenorphine.Side effects can be severe for some in the first few weeks.
I had severe nausea & vomiting & didn't eat for a week. I nearly quit but it really was last chance saloon so I researched how to stop Buprenorphine nausea. Zofran is given in the US but is ONLY available from hospital pharmacy in UK. My MS nurses arranged a prescription but I didn't collect as the side effects sounded really bad. I had medical cannabis for my MS and remembered chemo patients use it for nausea. It worked. I took cannabis for 1 week then stopped and the nausea had gone.
Then opioid induced panic attacks and anxiety hit. Again, I refused to stop Buprenorphine as it gave me 24/7 RLS cover. I used 25mg pregabalin to stop the panic/anxiety and it worked straight away.
So, side effects for me were severe nausea and panic attacks but the nausea has gone and the panic attacks are completely controlled by a small dose of pregabalin.
Most opioids also cause increased sweating and Buprenorphine does cause hot flushes at night but they are manageable.
Many people don't get any side effects from Buprenorphine.
Stay strong. There is hope. Pregabalin often doesn't work or stops working for many people that have augmented on Dopamine Agonists. Dr. Buchfuhrer thinks it's because our Dopamine receptors have been permanently damaged. Opioids affect slightly different receptors and are often effective for refractory RLS where the dopamine agonists and Alpha2Delta ligands have failed.Prof. Walker will prescribe Buprenorphine and will do phone consultations in the UK. I've replied separately about the side effects. Not everyone experiences them.
Your post intrigued me as I live near Abingdon: UPDATE: while initially I could only find a hyperbaric chamber at Abingdon in *Virginia*, there is indeed one at the MS therapy centre at Milton Park near Abingdon - and they'll treat conditions other than MS:
It also appears that "therapies are provided on a voluntary contributions basis – meaning they are usually far more cost effective than private treatment."
I've heard of poeople paying for Oxygen Chamber Therapy in MS centres before (for Fibro). I was interested in this too. I tried emailing the closest one to me at Whipps Cross in London but they said no, it was exclusively for MS patients. Have been meaning to try some others to see if they are more open to it. If you hear of one that says yes would love to know.
I also lookied into private therapy, but it's super expensive!
I agree it isn’t cheap and because I don’t have MS there is no discount. It is about £350 for the 20 sessions, less than £18 per session, put like that doesn’t sound too bad.
That is such a shame. The Centre near me relies a lot on help from volunteers and fund raising. Obviously, I don’t know how the Centre near you operates or if it is NHS funded, but it seems they are missing a trick by not letting non MS sufferers use the equipment for a fee.
Oh please share your results after a few sessions! Here is the USA we can go go oxygen therapy without a doctor's perscription in some areas -- it's not quiet the same as a true medical oxygen hyperbaric chamber, but... it is some sort of oxygen therapy. I have not tried it and frankly, never thought of it so your post is encouraging.
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