Why am I suffering when it's hot???? - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Why am I suffering when it's hot????

Emma020884 profile image
10 Replies

I was diagnosed with raynauds 6 years ago and was told it was primary only, only use to get it in my toes, but this year I'm getting new symptoms, I'm getting numbness in tips of my fingers and my leg calfs are killing me (see picture) do u think this is a typical raynauds flare up or something else????

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Emma020884
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zenabb profile image
zenabb

Our blood circulation is inadequate whether it is cold or hot. I am very bad in hot weather. On holiday in Cosica I had to sit in front of the open freezer.

I don't think that looks like Raynauds? But then mine isn't atypical so I'm not sure

NorthernBloke profile image
NorthernBloke

Fingers sounds like raynauds but not calfs. A few things might explain the wider pain which are linked with raynauds but best your GP/Rhuematologist talks it through with you.

Emma020884 profile image
Emma020884 in reply toNorthernBloke

I have rheumatologist on 21st July, my gp is useless, she just says u can get raynauds anywhere in ur body, including calfs 😡

cpns profile image
cpns

I have scleroderma in addition to Raynauds. The skin on my lower legs is red, shiny, itchy & tight, with lumps about an inch across appearing every once in a while which feel like bruises, as they reduce (after a number of weeks) that area darkens. This in not raynauds in my case, but is probably an auto-immune linked disorder, I am looking into it now. I think it might be best to check in with rheumatologist if something is on the change it would be good to catch it early. I hope that you get this sorted

Emma020884 profile image
Emma020884 in reply tocpns

I have an appointment with the rheumatologist on the 21st of July waited 6 months for this appointment, I had my anca blood test done n they said it's borderline so rheumatologist needs to do more investigating, I'm fed up with them trying to fob me off with raynauds this is a lot different to that

cpns profile image
cpns in reply toEmma020884

If you feel the same after your appointment it might be worth looking at hospitals who are specialists in this field and that you can get to & ask for a referral. Places like The Royal National Hospital for Rheumatic diseases ://rnhrd.nhs.uk/page/93 sound very go ahead. Any of the hospital that do research into auto immune diseases you might find more helpful. Perhaps someone on this site could advise. You are entitled to ask for a second opinion. It is really hard with six monthly appointments if you come away feeling that you were not listened to.

Fingers crossed you have a successful appointment & that a second opinion is not needed.

Emma020884 profile image
Emma020884 in reply tocpns

I really hope so there obviously something going on in my body 😢😢😢

Time to get a check up. Calf pain does not sound like Raynaud's - could be from multiple causes. Fingertip numbness - could also be from multiple causes. 6 years from diagnosis - our bodies are always changing (well, mine is). Raynaud's usually affects extremities (hands/feet/nose/nipples). Calf pain can be local (muscle) or circulatory or spinal/nerve. Fingertip numbness could be circulation or nerve related. Time to get a check up. Hope you get some answers soon.

Emma020884 profile image
Emma020884 in reply toChocolate-e-clare

Thank u for ur reply I have consultant tomorrow wish me luck 😁

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