Does anyone else suffer from Restless Leg Syndrome?

I have been suffering from Restless Leg Syndrome for many years getting worse as I get older. I am taking Pramipexole tablets at night which help but since starting on MTX I tend to feel a bit sick after taking the Pramipexole. Not sure if it is the MTX at fault but it only seemed to start when I began the MTX medication. I decided to experiment last night and not take the tablet to see if I could manage without it. Definite mistake!! I went to bed at 10.30pm and was still awake at 3am after hours of trying to control the urge to constantly move my legs. I tried getting up and walking about, running on the spot, stretching, lying with my legs on top of the headboard, trying to sleep sitting up and lots of other weird attempts to stop my legs from moving. ( only other RLS sufferers will know what extremes we will go to to get some relief ) I finally gave up and took the Pramipexole at 3am.Had to be up at 7.30am so am feeling very tired now.

Does anyone else suffer with RLS and what do they take to help. Was wondering whether to go to see my doctor to see if there is anything else I can take.


22 Replies

  • Hello Jean,

    Sorry you are a fellow RLS sufferer - I too have had it for many, many years and it has definitely got worse recently. And I can sooooo identify with the desperation!

    I recently started Pramipexole too and it has worked well for me and I don't seem to have any side effects from it. But I don't take mtx any more so don't have any experience with the mix of the two meds. When I first went to the GP to ask for help with the RLS, he prescribed Oramorph because he said he couldn't prescribe RLS meds without the say-so of a neurologist. Although that worked very well, I got used to it very quickly and started needing more and more to help (and began taking it to help with other pain too) and I have had an absolute nightmare trying to cut it down because I have become very addicted to the stuff so I genuinely wouldn't recommend going down that route. My Mum has very bad RLS which is accompanied by severe pain and she was prescribed Rivatril (not sure if that's how you spell it) by a neurologist. It's an anti-convulsant drug used (in much larger doses) for epilepsy but it works well for her. apart from making her very sleepy the day afterwards. The sleepiness isn't a big problem for her because she isn't working and she doesn't need to take it every night so I don't know how much of a problem the sleepiness might be if you took it regularly.

    You might know this already but there is an RLS forum on Health Unlocked and you might get some useful information if you posted your question there too.

    Really hope you can find something which helps you as much as the Pramipexole but mixes better with the mtx.


  • Must be hundreds on here lol, Quinine is normally the answer too it, you can get from your GP or most tonic waters or bitter lemon with Quinine in it. Or maybe a marathon for my charity. Lol

    Best of luck with it and if you find something that works well please let us know.

  • Oh yes I have had RLS for years too. It seems to come in 'batches', as in it'll happen every night for ages then I don't get it at all for ages. Then back it comes again! Like you I try anything and everything to make them stop and it is incredibly tiring.

    Hope you find some relief soon , it's a maddening condition!

    JoJo xx

  • Well I don't know if I have it or not - which I guess means I probably don't? But Tilly here did suggest that my pins and needles and other peripheral neuropathy stuff might be this and now I've become more aware of how weird I feel at night. I move about the bed continually and my legs and arms are always wanting to be moved or to just move themselves. Also I've noticed that all of my sons have legs that vibrate against the table legs in our kitchen when they are eating. I tried to stop my youngest from doing this and he got quite cross and said it was involuntary. I maybe noticed it less with the older two because they are both drummers and I just got used to them permanently tapping and vibrating.

    Sorry not much help to you at all but you have certainly made me think - as did you Tilly when you suggested it to me a few weeks ago. I've had to come off MTX to see if it's causing this neuropathy but when I took it with Omaprazole once I got terribly ill so these drugs can conflict quite badly for some people. Have you looked at the MTX info sheet to see if this is a recognised drug clash yet? Tilda x

  • Okay Sender - I've just looked it up again and decided it's a strong contender for me. I've ruled out Sjogrens, Pernicous Anemia and GPA now I think so this seems the more credible option. Especially as I'm going into week four off MTX and it's just getting worse.

    So what I would like to ask you all is whether you think RA is a trigger for flares of RLS or the other way round perhaps? I read that RLS can sometimes affect the hands and elbows too and mine is really epic again tonight. I find that Amitriptyline subdues it a bit but I now need sleeping tablets to get me through the night because I wake every morning at 3 or 4am and hands and legs are just crazy with buzz.

    But I also think it relates to the lowering of my dose of MTX and coming off this has jus

    made it even stronger so am wondering if it goes hand in hand with RA for some people?

    Sorry to persist in my quest for my own symptoms rather than answering your question - which I can't do. But I just read this when I put RA and RLS together on google:

    "Rheumatoid arthritis (RA) is a multisystem disease with a complex immunologic pathophysiology. Likewise, sleep disorders can involve a complicated interplay between the neurologic pathways, immune system, and respiratory system. Recent studies have shown an elevated prevalence of sleep abnormalities in connective tissue disorders compared to the general population. Restless legs syndrome (RLS) may be present in up to 30% of RA patients. These findings may be related to cytokine release and other immunomodulatory responses. TNF-α levels relate to sleep physiology and anti-TNF-α therapy may improve sleep patterns. Most of the patients with this disorder can distinguish their RLS sensations from their arthritic symptoms. RLS is a common comorbidity seen with RA, and prompt recognition and treatment can improve patient quality of life."

  • Hi Tilda, I don't know whether RA is a trigger for flares of RLS in my case as I was on Pramipexole before I was diagnosed with RA but who knows. It's such a weird thing to have as I suffer every night at some time through the night but without the medication it would be unbearable. It's so strange that I can sit on the sofa watching television and be okay but as soon as I get into bed and lie down I can feel the restlessness in my legs start.

  • Yes - I'm so grateful to you for posting this question Sender. This is exactly how my nights are carrying on too - well I've been an insomniac for most of my life but always blamed the eczema that coated me. But since that's gone I've been just as restless and never really thought that it was anything other than habit. But for the last 6 weeks since the neuropathy started up again I've been completely unable to sleep and my hands and legs seem so heavy but also so restless all the time. And I can't blame it on itching or pain because I'm not in very much just now - although the RA is creeping back I believe. Each day I get out of bed and it gets harder to walk and move around and I lie there thinking it must just be exhaustion - so confusing really. My middle son has just had a girl friend of his round - she's staying the night so they could go to the pub and she has the dentist near here in the morning. She's just switched from Psychology to Neuro Science at Glasgow uni and was telling me all about it. I told her about RLS and she was intrigued! Tilda x

  • The google article is very interesting about the connection between RLS and RA and I think 30% is quite a significant number. Perhaps that explains why my RLS has got worse since being diagnosed with RA 4years ago.


  • I thought 30% quite significant too - glad it's been of interest to you as well!

  • hi

    yes i get RLS, sometimes when im on the sofa watching telly but mostly when i go to bed .. it comes and goes, i seem to go for periods of nothing and then back its comes, nothing i do helps x

  • Hi all you fellow RLS suffers

    I took my Pramipexole last night and was relieved to get a fairly good night's sleep after the disaster of the previous night. Fortunately I did not get any nausea this time so I was wondering if it all depends on my reaction to my weekly MTX. Some weeks I don't get any nausea after taking MTX and some weeks I feel sickly for a couple of days afterwards. This week was a good week so I will see how the rest of the week goes with the Pramipexole.


  • Hi, I have had RLS for years but it has been much relieved by Gabapentin an epilepsy drug. I've been on and off Mtx and it didn't make any difference to the RLS. It seems to be part of the RA spectrum - yet another lovely symptom!

    Good luck.

  • Can you tell me if you have pins and needles and hot crawling sensation everywhere with RLS?

  • I would describe the sensations in my legs as a bubbling feeling in the veins. It also goes hand in hand with hot feet and sometimes cramp in my toes but no pins and needles.


  • I will investigate Gapapentin as an alternative to Pramipexole ( this one is used to treat Parkinsons disease) if the nausea becomes more frequent. Did you find it was okay with MTX or did it also cause nausea?


  • No, it doesn't cause nausea for me either with or without MTX.

  • Hi, yes! But I think that is a different thing to the RLS. It is as if someone has a tiny bottle brush in your veins and is giving them a good clean out! I think now that this has something to do with diabetes. I am a diet controlled diabetic who is not overweight (5'5" and 10 stones) but I am at the moment experimenting because I think it my be glucose levels too low in the night (or too high?). Who knows.

  • Why do you think this is a different thing to the RLS Tilstongal? I have not got diabetes (yet) - was tested a month ago - and have been reading the RLS charity's information just now and it describes the sensations I'm experiencing - very much like the one you describe with the cleaning out of veins with a bottle brush. I have not been diagnosed or referred to a neurologist - or even had a chance to mention it to my doctor yet. But it worsens when I'm still or in bed at night to the point of keeping me thrashing around all through the night to try and get comfy or fling off the prickling sensation!

    I guess as you are diabetic then that will be the most likely cause - but I wouldn't rule out RA or RLS or the drugs we take either. A good description though re the tiny bottle brush - thanks!

  • Well it is difficult to attribute these things to one cause. You could say that the diabetes was caused by the drugs for RA (predisolone) - which it was, but I am actively going to check my glucose levels when I get these feelings anytime of night.

    Thing is we all have such diverse symptoms it is impossible to mention all these to the Rheumy as you feel thy are not as important as other more painful and major symptoms.

    If you find out what causes this please do let me know!


  • I will let you all know. My GP has emailed me back today to say he doesn't think that my tingling/ parasthesia/ neuropathy tarries much with RLS and has never heard of it affecting arms and other body parts - legs only.

    Having posted on the RLS HU today I've decided he may be right about my symptoms not tarrying because, looking at the diagnostic criteria - mine doesn't really lessen on activity and I don't have involuntary jerks or twitches as one person describes? But apparently he's wrong about the arms at least!

    I think mine is different to yours as its most of all like pins and needles with numbness. I would have continued to put up with nausea once a week on MTX but not the foul taste and not the widespread parasthesia.

    I know exactly what you mean about mentioning things to rheumies by priority. I didn't mention my dry eyes or nasal sores and nose bleeds to mine despite writing this down on a list of questions. He was really only interested in joint swelling and blood results (mine were good this week) so it felt pointless. But if they are to be effective detectives (as I feel a good rheumy should be) they should want all the info possible to try and complete each patient's jigsaw. Good luck with monitoring your blood glucose levels. Tilda

  • I've had restless legs all my life, I remember trying to explain to my father why I couldn't get comfortable in bed and him just not understanding! I find it is much worse if I have been on a long walk in the day, if the air pressure is dropping e.g. when an Atlantic low is coming in and when I take Codeine. I've read it can be caused or made worse by a mineral imbalance in your blood, especially calcium (which is one of the reasons a mug of hot milk can help you sleep) but also heard it is connected with potassium levels too. xxx

  • Sorry I don't have it but it reminded me about this piece by one of my favourite comedians. Take care :)

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