Does anyone have chronic muscle spasm... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Does anyone have chronic muscle spasms/cramps?

uknlv profile image
8 Replies

Hi I suffer from terrible cramps in my toes and abdominal area. I take Quinine every day but it doesn't get rid or them. I am not sure if it is not working or that without it they would be worse. Anyone else suffer from this and do you take anything else?

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uknlv
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8 Replies
bellejewel profile image
bellejewel

hi i too have awlful muscle pain. my dr. has me on gapenton, neuronton, 300 mg 2 times a day. this does help, plus im on qxcodone, i hate taking this mess, but i have so much pain i sometimes just lay and cry, i lay with heating pad on legs. i have crest sd. it might help you to see a foot dr., i have to have foot surgery friday. i have hands where i had surgery, this mess the lumps of calicium is everywjere, do you have this, lov to talk, im peaying for all of us, god what i wouldnt give to be healthy again, but even some that are healthy you never know when this desease will strike any of us. god bless hope you get better, bell

creditcrunchie profile image
creditcrunchie in reply to bellejewel

Hi belle jewel , I personally think heat aggravates the cramps and spasm so I try and cool the area down ( before now stood next to freezer with door open which is not great when you have Raynauds but it helps more than heat. Of course this is around 2 in the morning and I can't get out of bed and waiting with awful anticipation as to how bad the next one will be . I also believe vitamin d levels can be contributory factor so think about this. I now take calcium abad vitamin d tablets (on prescription) this has really helped

StevieJoey profile image
StevieJoey in reply to bellejewel

Hi bellejewel Glad to hear from someone with terrible cramps in toes and legs and taking gapenton /neuronton 300 mg !My RA Dr just put me on that i am kind of scared of side effects like dry mouth,dizzy,forgetfulness ,i have pretty bad already do u suffer from any side effects !Praying for you bellejewel !I have sd crest my raynauds is getting worse to !

creditcrunchie profile image
creditcrunchie

Have you had your vitamin d levels checked. Mine has nearly disappeared since my vitamin d level was sorted . They are awful when they come as they are so painful and as they always effect my thigh muscles I feel very vulnerable because of course it's never a day time thing always middle of the night.

bellejewel profile image
bellejewel

thanks to all, sorry about my spelling sometimes, my hands hurt and they swell with calium lumps everywhere. i have just started vit d 2 times a week, its a percription. i have been in such pain, boy i was crying yesterday, it hurts to walk. i know my husband hates to see me like that, but dr. say nothing they can do. pain meds help some, every morn i wake with pain, in legs thighs its everywhere. do you have this. dr. tell me i have calium 2 inches thick on thigjh bones. i have foot surgery friday, dr, is going to scrape bone. its hard to walk. i have big lump in arm so you see im just one big pain, ha. i just keep praying god please help me or take me home. do you get days like that. sorry i sound so depressing but i cant help it, thanks foe listening, god bless

uknlv profile image
uknlv

I am on a supplement for Vit D deficiency now. But the cramps are still bad. In odd places as well, I get them below my rib cage on either side and the backs of my thighs. I have calcification in my feet as well. Just a mess I guess :(

thanks for all the suggestions.

judyt profile image
judyt

My husband used to get cramps which really bothered him. The GP said Magnesium helps, so he takes a dose of Homeopathic MagPhos every day and gets no more cramps.

uknlv profile image
uknlv

Check with your GP or Rheum, as my GP took me off of Quinine as they say that studies have shown that it is not good to take it long term. They had no other alternative though, and the Quinine didn't get rid of them. But if I don't take it then it is pretty much all night with terrible cramps all over. I was told to limit the usage, and take it for one week on and one week off. What it causes I do not know as I was just told they are bad for me. Hate when I get that one and no one wants to explain.

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