Does anyone here suffer from RLS: I suffer... - LUPUS UK

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Does anyone here suffer from RLS

PeterWoolnough profile image
15 Replies

I suffer absolutely chronic Restless Leg Syndrome, I am off to see a neurologist on Friday. On a funnier note, my Mrs. thinks we are having earth quakes when I am at my worst.....

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PeterWoolnough profile image
PeterWoolnough
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15 Replies
Sue2803 profile image
Sue2803

Yes, I get terrible restless legs, especially when I am over tired. It really is awful sometimes. Never thought about getting help for it, just thought I had to put up with it, let me know if you have any success, please.

LoopyLupus profile image
LoopyLupus

I also get them a lot, drives my husband insane!! Is there treatment for them, I thought it was something that you just had to put up with. I am seeing the neurologist in November so I will ask him about it too. If you get any answers please let us know. x

PeterWoolnough profile image
PeterWoolnough in reply toLoopyLupus

Any news I get tomorrow will be posted here....

I have RSL, Not funny, it has moved into the (L) Arm as well, the drugs are usless, they do not work after a while, beside they are for people with Parkinsons. The first drug I was given called Cabergoline was great but it messed up your heart.. beware this is a marrige breaker for obvious reasons.

It comes on at night when you go to bed, but as the illness progresses it can come on at an time spread to all limbs, it stinks, yep I have it bad and its kept me awake all night alone.You will learn that neuro's diaganose that about it, they have few drugs.

There is little they can do.

Ken

PeterWoolnough profile image
PeterWoolnough

The Dr prescribed Ropinirole for my RLS, but they take time to get into your system and your RLS will get a lot worse before it gets better, mine still not 100%, hence the visit to the Neuro's. When I first started on them I had RLS 24 hours a day for about 5 days, as well as nausea, so if your Drs try you on that tablet make sure you get a prescription for nausea as well, rather be safe than sorry. Goodluck to all that have it as it is a nightmare to have.

Peter i never thought about that before,,but yes,,but its in my feet mainly,,not often legs,,it drives me crazy at times .

PeterWoolnough profile image
PeterWoolnough

Seems that RLS goes hand in hand with Lupus...

deedeewilliams2 profile image
deedeewilliams2

I had a husband that had this and a nurse told him to get off caffeine and to drink lots of cranberry or crangrape juice. I was amazed how much this helped. I have had small bouts of it. When I do I cut back on the caffeine and start drinking the juice and it always helped so much.

schnauzersmudge profile image
schnauzersmudge

I used to up to about 6 months ago. My GP who knows my history with Lupus, suggested 1 10mg Ampytripyline a night, for a week then 2 at night. I have very little pain now and sleep so well, which I found brilliant and still do. Waking up refreshed is fab!

PeterWoolnough profile image
PeterWoolnough

I am on 100mg Amytriptiline, does not make any difference, they have tried 30mg Zopiclone, no difference. I just know I am a difficult case even for the Drs, they have told me so....

stphnvnsn profile image
stphnvnsn

I had it real bad. I tried several medicines for it. I;m now taking 300mg. of Gabapentin and it works for me.

loriodeh profile image
loriodeh

great to hear its not just me......did not realise my jumping legs were to do with the sle.....drives me mad. will ask about something to help from doc..

Lorelei profile image
Lorelei

Peter, I just want to say that I love your sense of humor!

Sometimes I think that a sense of humor is our most effective medicine for lupus, RA, fibro, RLS and all of our other troubles!! :)

jdking profile image
jdking

Yes I have RLS that was one of the first problems I developed before I was diagnosed with lupus and rheumatoid arthritis. I was taking Requip for my RLS & it worked great, it is usually started in small doses & then you work up to the maximum dose, it truly worked for me with no side effects or problems, but then I developed neuropathy & it was affecting my legs so I was taken off of Requip & I now take Neurotin, 3, at bedtime, to help with the leg pain & it also has controlled my RLS. Good Luck

katrinaa profile image
katrinaa

Yes i too get it at night. Drives me nuts! Stupid legs grrrrrrr

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