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Scleroderma & Raynaud's UK (SRUK)

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marilynmcl profile image
10 Replies

If someone else has written about this...apologies....may have missed it!

Anyway, does anyone else get bouts of heat flushing...not menopause but similar...particularly after any slight exertions. I do and these kind of 'flushings' last about three or four minutes ...just wondered if this was part of Ssc?

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marilynmcl profile image
marilynmcl
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10 Replies
Joan59 profile image
Joan59

Hi I'm also not sure if they are related either but I find them annoying I can be fine all night and wake up and it starts. Sorry I couldn't be of much help.

Regards

Joan

fairy56 profile image
fairy56

Hi Marilynmcl, I also get these hot flushes, they can occur out of the blue and during the night!! I put it down to this complicated condition that never ceases to surprise me with brand new symptoms. I have also noticed that my hair is falling out and my eyebrows are disappearing!! thank goodness for my fringe. I have hospital appointment next Friday with my rheumatologist so will mention it again. Does anyone notice that one side of the body is affected more than the other, with me it is the left side, although it was my right side that was affected first.

I have had strange heat flushes for about 7 years now - they mostly affect my shoulders, back, elbows and wrists. I do also have them everywhere now and am well through my menopause and out the other side. Mine last about three minutes too and come from out of the blue.

I have primary Sjogrens, arthritis of the neck (not thought to be responsible for neuropathy), hips and lower spine, non erosive RA, small fibre neuropathy (as part of the Sjogrens), autonomic neuropathy (due to SS), secondary Raynaud's and Hypothyroidism. These heat flushes in my wrists were my first really odd symptom - when they spread to my whole body I decided they must be part of the inflammatory process as I usually have a very high ESR/ sed rate.

Hollyhobbie profile image
Hollyhobbie

Yes I have these. Again , usually in the night! Crazy condition of ours!! I also have hair loss when I asked at RF -yes just another symptom.

marilynmcl profile image
marilynmcl

Thanks to all! I am relieved that I am not alone in these hot spells! I too am well past menopause so I was sure that this was not what was wrong. Guess I will be having a word with my rheumatologist when I go back in January for my next appointment. Thanks again to you all.....so helpful on this site! Merry Christmas to you all too.....I know, it's too early, but I might not get the chance before then so....have a happy holiday all!

marilynmcl profile image
marilynmcl

I have noticed my hair has got thinner as it used to be quite thick......and used to have long eyelashes but they seem to be wee stubby things now....also, huge floaters in my eyes which leave me with quite blurry vision at times whenever they 'float' into view....was at the opticians and she commented on how large they were too...but nothing can be done on this apparently...just need to watch for retinal detachment she said. Ho hum......never rains etc.

Sharonmcallister profile image
Sharonmcallister

Hi Marilyn, yes i have hot flushing, mainly during the nite, if i change my position in bed or pay a visit to the loo, i could b shivering when getting in2 bed, 5mins later there it goes!! I put it down to being menopausal or my thinking it could b medication as well. I did mention it to my gp, he didnt seem unduely concerned!! The flushing may only last about 5mins so i just have learnt to live with it. Hope you have a lovely Christmas as well. Take care. xx

marilynmcl profile image
marilynmcl in reply toSharonmcallister

If you have Raynauds then getting out of the warm bed and going to the loo during the night when the house temperature is lower is enough to cause fluctuation in body temp. so this is why you are shivering...then once in bed you have exerted yourself just getting up and then getting back...so hot flush....I get this type of heat flush just getting up off the couch and walking across to the kitchen...in fact, any exertion at all and I get the flush. Very annoying! x

Sharonmcallister profile image
Sharonmcallister in reply tomarilynmcl

Yes Marilyn, i have raynauds bout 6yrs now, diagnosed scleroderma bout 3yrs now. menopausal as well so a combination of all these certainly dont help!!

marilynmcl profile image
marilynmcl in reply toSharonmcallister

most certainly they don't. So...keep your warmest dressing gown or thick cardi next to the bed so you can cover up before getting out from under the duvet! I keep mine under the pillow so it is handy and warm to wear if needed xbut......best of all......don't get up unless you really really need to! :)

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