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Scleroderma & Raynaud's UK (SRUK)

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painfull legs

Lisa_Lovatt profile image
12 Replies

hey does anyone with raynauds no how i can stop my legs from killing so much i went town on christmast eve for 5 hours and since i went there they have been killing so much :( the pain wont go ive tried lying down and that doesnt seem to help was wondering if anyone knows of any ideas thanks!

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Lisa_Lovatt profile image
Lisa_Lovatt
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12 Replies
Kentish_Man profile image
Kentish_Man

I have Raynaud's & also Vasculitis. Between the pair of them I get very painful legs. I do not know what you did on Christmas Eve for 5 hours, but I find standing around makes them worse. If I am walking then it is a lot easier as I guess that you are making the blood flow better/easier. If I am just standing, then I quickly have to look for a seat or I will suffer then and also the next day, I certainly know now what my limits are.

I hope that helps you.

zenabb profile image
zenabb

I have to avoid walking too far or my legs hurt and I get exhausted. I have a disabled badge for parking because of that. The only solution is to rest for a long while. My doctor prescribed 10 mg of Amitriptyline after trying all sorts of things, it prevents the pain from being unberable.

Cherelle16 profile image
Cherelle16

try heated things! like roastin hot bath, hotwaterbottle, heat pack ect...

i have scleroderma but this really helps mee alot! especially when i was out on christmas eve, mine were killing me !

wartsandall profile image
wartsandall

I suffer from this problem too and can really emphasise with you. I find hot showers and regular pain relief helps.Health professionals have advised me to keep mobile and try gentle exercise such as swimming. I also find local analgesia such as voltarol gel also helps.

wartsandall profile image
wartsandall

Hi lisa, you need to keep yourself warm. Cold wind can take you unaware so you need to keep yourself wrapped up in comfortable layers of clothing. I nipped out to post some letters and was 'nt dressed for the weather, I really suffered the following day with painful, aching muscles.

I hope this helps

Lisa_Lovatt profile image
Lisa_Lovatt

thanks for all the info everyone yeah ive tried keeping warm wartsanall i had 3 jackets on a scarf and gloves but that didnt really help i was out doing the rest of my christmas shopping thats why i was in town for 4-5 hours thanks i will try and keep my self wrapped up more and see if that helps thanks

VivianM profile image
VivianM

I agree with the rest about the exercise,the warm clothes and everything but LISTEN:the most important is to choose a mall to do your shopping.In general make all your decisions according with your special need to stay warm all time.Is not a ''problem'' is just YOUR thing and if you respect it, it will respect you back.

Marry Christmas!

cookie74 profile image
cookie74

hi lisa_Lovatt,, yeah me too been complaining for months,, its like carrying two big weights,, go sooooo tight,, back of legs, n get tired so quick,, i got told i need to exercise more, i do lol i ave 4 children to run after n im a single mum too,, then went back,, said i was over wieght!!! i am the same weight as i was years ago,, then leg swelled,,burning hot,, cudnt bend it, very sore,, gp giv me water tablets,,2 week later still as bad,,went back,, said it was infection??? giv me antibiotics,, 2 week later at the hozzie i go for my scleroderma,, tested n i had 2 blocked arteries<--- if spelt wrong sorry :) DVT,, n been on injectionf for the last 3 month n warfrin for last 3 week too,, becareful n take care,x

wartsandall profile image
wartsandall

Hiya Cookie, ..ditto !!!!, I'm proper fed up too, I get annoyed when I'm being told that I;m over weight and need to exercise !!!! ( I;m a size 12 by the way ). I have aching muscles and feel exhausted whenever I climb stairs and walk, my 78 year old mother can walk further and quicker than me. My muscles are tender to touch and in the past I have had 2 DVTs in my arm. All of my muscle enzyme blood results are always fine, therefore I'm labelled by medical professionals as having fybromyalgia,,,, but to be honest I'm not convinced !!!!! I'm wondering if there are other people with raynauds and scleroderma experiencing the same problems ?

Crystalcindy profile image
Crystalcindy

Does anyone have pins and needles in their legs and the numbness sometimes does not go away for hours? I am experiencing this and having numbness in hands as well as arm. Wearing my gloves at night but I am paralysed when I wake up. Its rather difficult to get out of bed.

Debbied73 profile image
Debbied73

Hi all

I get this but my medication takes it away. I cant wait for buses I'd rather keep moving.

As the seasons change In the UK and the pain returns it can be a bit depressing but I've taken the step of joining my local spa for swimming sauna etc.

As I am perimenopausal that also makes me more sensitive to pain. But you carry on.

To those 'overweight' you might want to educate your doctor on how difficult it is to exercise when it's cold or that fat actually insulates from attacks.

That's not an excuse tho. We've been dealt these cards. I choose self help underpinned with a good GP.

Littleleni profile image
Littleleni

Swimming helps, epsom salt baths, magnesium and

Potassium relax muscles and niacinimide is good for opening blood

Vessels. D-ribose helps with energy and muscle help.

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