Does anyone else get restless legs and arms?

[Mystynzl]

I have had restless legs and arms since diagnosis. I am now on pramipexol. I started to get times when my whole body would be twitching. I am no longer on wafarin as I could never stabilise my inr. Do others get this. I have catastrophic Hughes. ..

[jetjetjet]

Hi Myst- Yes i have benign essential tremor and tremor essentials---- they were better after start of hydroxychloroquine that's the way it went for me - i am still on warfarin {high dosage for the next few days ] then back to # 4 + # 5 's-- i also have muscle spasm 's that are totally different from the restlees leg syndrome , or the tremors .if i can help in any other way i'm here----------------------------------jet

[MaryF Administrator]

Hi there, I do, but not sure which autoimmune disease of mine is causing it, I opt to take magnesium, a light dose and also include magnesium rich foods in my family's diet. However I do not get muscle spasms. I hope the doctors can help you with this, it does sound very uncomfortable, they might have some fresh ideas, plus others on here of course. Mary F x

[sharonap]

I have restless legs but last night felt like it was my whole body. could not get off to sleep as I kept having to turn from one side to another was driving me insane!!!!.

[Sue2803]

I also gets the restless legs, especially if I am tired and do not go straight to bed., I jerk with spasms all night long, as soon as my body starts to relax, so the jerks start, sometimes so severe it wakes me and my partner, I make him jump!! lol.

Have told docs about it but no one ever seems to offer anything to alleviate it.

[emmaj]

Hi I get restless legs and arms, the twitching and spasming is something different, My consultant said its a common part of APS - which i was relieved at because I was convinced at one point it was MS. A Neurophysiotherapist explained to me that it was down to the nerves not being supplied and the muscles sort of go in to overdrive and get confused not knowing when to switch on or off. Im in the middle of an episode of eye twitching which is terrible and annoying. Have you tried PREGABILIN or GABAPENTIN. I find these really help for a few hours x

[CanaryDiamond10]

Hi Mitzie: I get severe, unbearable, cramping of the calf muscles which wake me in the AM upon occasion. My doctors are scratching their heads at it and raising one eye brow, giving me that look. It's not quite what the medical term restless leg syndrome outlines, but its close. My mother got this after contracting malaria in Africa during the war. They gave her tonic water and quinine and she said it worked. She would be plagued by this from time to time throughout her life and tonic water always helped. So I tried it and it does help. I would just like to know the cause so I can avoid it and I'm not content to just toss it in with the rest of the APS symptoms. I did take note when APSnot noted that Placquenil has quinine in it and there are many on this site that will attest to it helping with cramping type pain or pain in general emmanating from APS. I have not yet been able to give placquenil a fair trial as other medical diagnoses are acting up at the moment and, well you know how it is, you pay attention to the symptom that screams the loudest.

I do hope you feel better. Perhaps Placquenil will help you. It's worth asking your APS doctor.

Good luck on your journey, Mitzie.

Warm wishes,

CanaryDiamond

[GinaD in reply to CanaryDiamond10]

I get calf cramps. My physical therapist , many years ago, suggested.i tighten the opposing muscles the instant a cramp starts. And for me this approach has been magic! Just today I started to get cramps on 2occasions, but tightening the opposing muscles is so automatic now that I just shut them down --often without consciously noticing. but there are many triggers for cramps, and perhaps I am lucky to have a condition that can be managed well with some muscle tweaking.

[Mystynzl]

Wow. ..I'm not alone. My doctor feels that mine is a form of restless leg syndrome. But we had noticed that it go progressively worse after a massive headache. I had an mri last year that shows the headaches are caused by micro emboli. I had the restless leg or should I say restless body syndrome so bad once that the only relief I got was to keep walking. ..after 20 hours I ended up exhausted and finally my body said sleep. Hughes can be such a pain sometimes. I am getting used to being an anomaly.

[Moon_Shadow]

Yes, I get restless legs syndrome. It is mostly at night and stops me sleeping when I get it.

[Moon_Shadow in reply to Moon_Shadow]

I got it so bad when I was pregnant with my 3rd child that (along with other reasons) they agreed to start my labour early, I was exhausted!