I have Raynauds, in warm(as well as c... - Scleroderma & Ray...

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I have Raynauds, in warm(as well as cold)weather my hands throb and are painful, does anyone else get this? Any way of stopping it?

SuperSophie profile image
11 Replies

I sometimes try cooling my hands but then they tend to become too cold and then become numb and painful. It always seems like its one or the other!

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SuperSophie
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Poshcards profile image
Poshcards

I take Nifedipine once a day for this and it helps me!

Peanutbutter6 profile image
Peanutbutter6

Accupuncture was the only thing that helped me, I still get cold hands, but the pain has gone along with the ulcerated fingers , try some, it's available on th NHS..

Barnclown profile image
Barnclown

Not sure, but could you possibly be like me:

In cold weather & in hot weather my hands & feet & parts of my face can be simultaneously vvvvv cold & vvvvv hot. So I can feel freezing & burning at the same time...sometimes the freezing feelings & whiteness happen more on their own, and sometimes the burning feelings & swollen redness happen more on their own, but even then, the opposite feeling will come in v soon alongside it's opposite, e.g. I can have frozen numb hands & burning swelling prickling feet at the same time.

My consultants say this happens because I have 'simultaneous raynauds & erythromelalgia'. The raynauds & scleroderma website has good info on erythromelalgia, in case you're interested.

I think I know what you mean: it's v hard to manage these conflicting tendencies. I've been learning to cope with them all my life...I'm 60 now...and these symptoms got even worse in my late 40s early 50s...finally a rheumy tried me on 10mg nifedipine daily for 3 days, which was a disaster because I turned bright red & burning all over. Also, nifedipine caused my other chronic symptoms to flare. At that point I was diagnosed with systemic lupus.

This was 3 years ago. Since then, by trial & error, rheumatology has me on hydroxychloroquine+amitriptyline+mycophenolate, taken daily. These meds have only vvv slightly reduced my RP & EM symptoms, which happen everyday in a cycle (the burning tends to be worst during afternoon & evening no matter what the surrounding temperature is). Other than taking these meds, I am constantly lifestyle managing these symptoms....the R&S website & this forum have lots of good tips, and the TEA (the erythromelalgia assoc) website has good tips too. I hope you get some helpful replies

Apologies if my version of this isn't something quite like yours

Take care

foxglove profile image
foxglove

I find CIRCULEASE (HEALTHSPAN - manufacturer) helps a lot with my Raynaud's Google it and see what you think. Or even phone or email HEALTHSPAN, they are knowledgeable and helpful.

Hope this helps, good luck

zenabb profile image
zenabb

You can't stop it. That is what Raynaud is, but you can reduce and help it with medication and iloprost and also care. I take nifedipine and have Iloprost to dilate my blood vessels. I try to keep warm but I am affected by hot weather and sometimes have icecream - it cools me down and turns my fingers blue .... so I have a hot drink. And so it goes on.

lundy profile image
lundy

i am an acupuncturist and can vouch for its effectiveness for many people.

regards

tina

dawn1972 profile image
dawn1972

I have severe raynauds in my hands, knees, and feet all year round. If it's 90 out and the a breeze I get an attack. I live in Michigan. All the doctor's I've seen said they've never seen it so bad and I should move. However, I can't because I'm divorced and my kids need to see their father.

dawn1972 profile image
dawn1972

Oh, I forgot to mention that my arterial ulcers went away when I went through chemotherapy. I just finished a few months ago and I now have 2 small ulcers. My raynauds attacks were not as bad but my rheumatologist didn't care to do a study or contact anyone to do one.

SuperSophie profile image
SuperSophie

Thanks for all of the replies!

I'm only 17 so I don't really want to be going down the path of using drugs to control it yet. I will definitely try the other options though, thank you!

in reply to SuperSophie

I use a strong steroid cream :) definitely don't cool your hands!! X

shaylagone profile image
shaylagone

I am on a new med. it wasn't created for the arthritis stuff, but it is helping. check with your doc. it is called Mycophenolate. perhaps it could help you. it made my CREST go dormat

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