Forum

Severe Restless legs Syndrome

I’ve had relapsing remitting MS since 1994 and severe Restless Legs Syndrome(RLS) since 1997. I have read that 30% of people with MS will have some form of RLS but I haven’t met anyone else with the condition and my MS neurologists and nurses are not familiar with it or how to treat it effectively. I am a member of an RLS forum but no one else on there has MS. I know it’s caused by the scars/lesions in my spinal cord and I am on oxycontin to try to resolve the dreadful symptoms. Does anyone else with MS have it?

Not since I started taking 350mg of magnesium and that seems to have sorted the problem out. It’s a beneficial mineral and worth trying to see if it helps.

1 Like

Thanks Whammel,

I’ve been taking magnesium threonate for months but sadly, makes no difference at all. So glad it helps you. Cheers,

It was obviously a bit optimistic to think it would help a severe case, but you never know. I hope you find a solution to this deeply unpleasant (and fairly common) symptom.

Thanks so much Whammell. I’m seeing an expert in RLS in March so he may have some further advice on how to get more than one hour’s sleep at a time. Fingers crossed.

Quinine used to be the preferred drug for row. But it is not prescribed as much, as it can cause heart rhythm problems.

My GP did prescribe it, advising I don’t take it all the time, but suggested I drink tonic water.

Pollsx

Hi Boudica,

Current knowledge on severe RLS is that quinine does nothing for it but it can help leg cramps. But thanks anyway and glad it helps

jx.

Hi, I am on 15mg OxyContin twice a day for rls it has made a huge difference, how long have you been on it? It took a few weeks to kick in for me.

1 Like

Hi Agenda,

I have been on 10mg at 11am and 15 mg at 11pm and have been on it for nearly 3 weeks. I do seem to have slight anxiety/panic attacks but not sure if that’s because of the oxycontin or the disturbed nights or the fear that it will stop working. How long have you been on it and did you start on a lower dose? I’m seeing a team of RLS specialists at King’s London soon as my MS specialists are not sure what to prescribe for it after the dopamine agonists/gabapentin stopped working. My GP was very reluctant to give me the oxycontin but I’d run out of options.

It’s good to hear that the oxycontin is working for you. It gives me hope.

Thanks for the reply,

jools

Hi Jools,

I have had this for about eight months, I have not been diagnosed as yet but have had Optic Neuritis and other symptoms for the last two years. The neurologist called it benign fasciculation.

1 Like

Hi Jools, I suffer from that at night and my neurologist prescribed 0.5 of Clonazepam to take before bed, I find it really settles my feet and legs down and also helps me sleep.

Ella

1 Like

Hi Ella,

That was one of first drugs my neurologist tried but sadly, didn’t stop the jumpy legs. So glad it’s helped you.

Take care,

Jools

I suffered sever ‘RLS’ for a couple of years before I was diagnosed with RRMS. GP prescribed quinnine which didn’t help at all. Husband helpfully told me ‘just relax’, also no help!

It was dreadful, every evening and through the night, every 17 seconds - I was down to about 1 hour sleep in every 24.

After MS dx my MS nurse said it was MS related and not RLS at all, and advised me to take Baclofen. The difference was immediate and changed my life. I take two 10mg tablets a day, one at 6pm and one before bed (usually between midnight and 1am).

It does make me drowsy, I regularly fall asleep for about 15 minutes or so a couple of times during the evening but still sleep through the night, usually 6 - 7 hours. Speak to your MS nurse to see if this would work for you.

Hi AngC,

I know baclofen helps spasms but I’ve been told I have RLS which is relieved if I get up and move my legs. It is something I’ll bring up with the RLS neurologist though. The oxycontin dampens the jumpy legs but I still wake up a lot with twinges. It’s definitely the worst MS symptom ever and over the last 24 years I’ve had every possible MS symptom.

I’ll try anything.

Jools

I take 500g of magnesium which helps to settle my legs. I really notice the difference if I forget to take it! Sharon x

hi Sallum,

Thanks for that info and really glad it helps you. It also helps Whammell above but has made no difference whatsoever to my severe RLS. I was on ropinirole for years which worked really well but then developed severe augmentation so had to go through withdrawal ( hell on earth) for weeks and then tried gabapentin for months which was moderately successful but I’m now on the last available drug- oxycontin which is not working very well for me either as I’ve developed panic attacks on it. I’ve been on a restricted diet for over 8 months to try to control it ( no alcohol, caffeine, chocolate, grains, gluten, sugar reduced salt) and take all the minerals and vitamins suggested as helpful. Can honestly say it’s the worst MS symptom ever and I’ve had them all over the last 24 years.

I did have restless legs when my MS was first diagnosed I took zinc tablets which at the time helped alot. Now i am so tired I seem to have no problems getting to asleep, I recommended the tablets to my elderly father who still takes them to relieve the symptoms of RLS not MS.

Rose

I take PRAMIPEXOLE 0.088mg an hour before bed, it really helps!! If I forget, or, take it late I really know about it !!

I have terrible RLS. I take PRAMIPEXOLE 0.088mg an hour before bed. It really helps! If I forget, or, take it late I really know about it and can’t sleep for it. Hope this helps you too.

Hi Lynnms,

I was on a very similar dopamine agonist, ropinirole, for 15 years and it was brilliant. It was the drug used before pramipexole was introduced. However, I developed Augmentation, a horrible but common response to the dopamine agonist where the drug seems to stop working, the symptoms become more and more severe and they move to other parts of the body. Pramipexole, being a newer, extended release version, is less likely to cause augmentation.

Once it happens the only solution is to very slowly reduce the dose over months, with the help of an opioid, but the withdrawal is horrendous. I can honestly say the experience left me with PTSD. I went 2 weeks with no more than 2 hours sleep a day and with constant all over body spasms.

Once through withdrawal, you have to find an alternative medication to calm the RLS and I am in the process of doing that now. If you have suffered augmentation, you cannot go on another dopamine agonist so pramipexole is not an option for me.

I am on oxycontin but having very bad side effects so seeing a specialist RLS neurologist soon to see if he can advise on something that can let me get more than 2/3 hours sleep a day.

So glad the pramipexole is giving you relief.