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Scleroderma & Raynaud's UK (SRUK)

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Hot hands! No sweating, just putting off intense heat, any suggestions for a cause?

Lala7777 profile image
5 Replies

My hands get so hot and it makes me miserable, anyone else have this issue?

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Lala7777 profile image
Lala7777
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5 Replies
lindyanne profile image
lindyanne

Hi!

I have diffuse scleroderma with all sorts of variables!

However my son has erythromelalgia (EM) and gets hot red hands particularly with temperature changes. Def worth asking your consultant about that

Best of luck to you

EOLHPC profile image
EOLHPC

My version of this is due to Erythromelalgia aka EM (in my case EM is simultaneous with Raynauds, secondary to systemic lupus erythematosus).

EM affects each patient differently. Some cases involve the feet only, some the hands only. Some cases involve the knees & ears too. My EM is worst in my feet, but every day in a 24 hour cycle all year tound EM affects my feet, hands & face, as does Raynauds. My rheumatologist says EM is not well understood & is v hard to diagnose...when i suggested EM is like raynauds gone bonkers, she laughed and said: more or less

Here is a link to the scleroderma & raynauds uk website info on associated conditions including EM:

sruk.co.uk/scleroderma/eryt...

Hope this helps,

🍀🍀🍀🍀Coco

Sanmateogirl107 profile image
Sanmateogirl107 in reply toEOLHPC

i have erythromelalgia only when i put my hands in cold, warm hot water i feel like my hands have been cut off. apart from that no pain. crest, lupus, i am seeing immune doctor, rheumatologist, pain doctors, pain meds, using meditation and art therapy for pain relief and yoga. counseling also it does help and support groups. since i have zero family support they are my support. its like having an adopted family. try probiotics and tumerick its helps knock down immune disease. good luck love julie

EOLHPC profile image
EOLHPC in reply toSanmateogirl107

Thanks julie! I’m lucky cause i’ve had a lot of help like you re learning to manage my overlapping immune dysfunction & connective tissue disorder mix. And at the mo my lifestyle management, complementary therapies + nhs care are helping quite a lot. In 2016 THE ERYTHROMELALGIA ASSOCIATION published a really good up to date download-able guide - maybe you know it & others here may be interested so here is the link:

erythromelalgia.org/resourc...

XOXO

Sanmateogirl107 profile image
Sanmateogirl107

do you have erythromelalgia its worse than raynad's go to see immune doctor i have it but no burning just when i do the dishes the pain i scream wholy murder. apart from that just cold weather sets its off. wear gloves when its cold. sounds like crest syndrome. pain doctor and rheumatologist. hope that helps. julie

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