Restless legs?: Asking my question as a... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Restless legs?

uknlv profile image
12 Replies

Asking my question as a blog as I needed more space 8) . I get what I have been told is restless legs, I get pins and needles in my toes and feet and my ankles and calves get to feeling really weird. They feel like I have to keep them taught or stretched all the time. It happens mostly at night or when I go for a lie down during the day, but sometimes it happens when I am just doing normal things. Asked my doctors about it but they don't know of anything that might help. I was part of a trial years ago where they were giving people medication for Parkinson's disease to see if it helped with it, it didn't help me but I found out at the end that I was on the placebo. But then they didn't go forward with it for some reason, so never got to see if the medication would help or not. To be honest would prefer to not take anymore meds as on so many now that I rattle when I walk lol!

Does anyone else get this and if so have you found anyways of resolving the problem? (Finally got to the actual question hehe)

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uknlv profile image
uknlv
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12 Replies
Whatever profile image
Whatever

I get this and it drives me mad! The only thing that has helped me is the drug Imipramine. I take one 10mg tablet each night and this helps me.I was first offered Amytriptyline but I hate this drug as it makes me so sleepy.

wish I could offer you a drug free answer but haven't found one yet

annie63 profile image
annie63

Hi, i have this as well and the doctor had to put me on iron tablets anyway but he said that low iron could cause it. i have been fine since taking extra iron.

Jeannie10 profile image
Jeannie10

I have restless legs too. Makes me wonder if there is a correlation between SS and RLS? I've had RLS as long as I can remember. My first symptoms of Scleroderma began 18 years ago with Reynauds syndrome. I don't want to take any more medications, so I just "deal with it"

sgbee profile image
sgbee

I had some leg pain issues with scleroderma early on but eventually it passed. Then with Sjogrens I got leg pain and restlessness big time. After 5 years it has begun to lessen a bit. Like jeannie10, I just deal with it because I don't want to take any more meds. If I've had too many days with poor sleep, I do take one tylenol pm to help sleep.

Vickisu profile image
Vickisu

I have Raynauds, Sjogrens, Fibromyalgia, Mononeuropathy multiplex, and degenerative neck and back disc disease. I was diagnosed with 'restless leg' many years ago after a sleep study. I was put on a certain med, which I cannot remember, but due to my disabiilty status now, I have to conserve on what meds I take. but anyway, what helps me a lot with the restless leg problem, is if I take just one lorazepam right before I go to bed. works every time. also helps me drift off to sleep when my pain is really bad...

uknlv profile image
uknlv

Thanks all, I too have been doing the deal with it as I don't want anymore drugs either. But will try the iron, try it with adding more greens and iron containing foods and see if it works. If not will try a supplement. I seem to be weird with any kind of drug that is supposed to help me sleep, they seem to make me hyper! back in my reckless youth I was given some speed and I slept for 12 hours, might be psychological or I am just backwards lol

cher profile image
cher

I had know idea that my restless legs could have come from Scleroderma.... I just chalked it up to something else on my list! Now I think it all ties in together. I am a massage therapist, limited now because of my hands being sooo bad. But there is a technique I use it helps. It's called unwinding. You let your legs shake, do circles, whatever they need to do till they stop. It does help. If you have someone who can hold your legs and let them go it helps better. But tell them to hold on. It may sound wierd to most but it is an old custom and it is a sense of letting go some how, It helps what do you have to lose. Good luck

uknlv profile image
uknlv

I would like to give it a go Cher, but I am sometimes quite thick lol So what do you mean by letting my legs shake, do I sit on something and dangle them in a circle? I think this would really help as when I get this it feels like I have to keep my legs in motion so this would logically seem like a good thing to do to get rid of it. Cheers 8)

dawn1972 profile image
dawn1972

I also have restless leg syndrome. They first tried lots of different medications including the parkinson's one, klonopin. Then I wanted to stop the klonopin because I was requiring increases in dosage. Then they put me on requip. However, most people get used to the nausea, but I didn't I ended up taking it for three years and vomited twice after taking it. I did have my B12 level checked which was low so now I take weekly injections, that helped a very little. Now I am taking ambien. It actually does not make me tired and it stops my legs and it was also intermittent in my arms. Some medications seem to of made it worse like nortriptyline.

faith89 profile image
faith89

I also suffer with Restless legs. There is a homeopathic remedy called Restless Legs by Hyland's. I have been using it for years and it works well without having to use a prescription. Hope it helps, faith

uknlv profile image
uknlv

Thanks faith, I will see if I can find it online.

seansterb profile image
seansterb

This might be a muscle cramp, you should opt natural remedies for fixing this . For instant relief you can go for levare. to know more on it visit at : ultimaxxhealth.com/

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