butterfly rash, or just my imagination? - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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butterfly rash, or just my imagination?

Queencara78 profile image
4 Replies

anyone had this as well?

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Queencara78 profile image
Queencara78
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Connie75 profile image
Connie75

Hi

I suffered from this & spells of swollen face, neck & chest on & off for 6 months. I was also totally exhausted, couldn't get out of bed some days. Got fobbed off by gp & ended up paying to see private dermatologist. Got tested for autoimmune diseases including lupus. Only thing that they picked up on was low ferritin levels. I'm sorry now I didn't ask for celiac test as research has shown connection to Raynauds. So, basically got told to add iron to diet & that I must have been suffering from a reaction to something. Not very useful at all!!! My skin still has slight reactions & I use ointment called Protopic twice per week to keep flare ups at bay. Feel for you. I had to walk my dogs in the dark as my face was so bad, thankfully it was winter so not much daylight. My face was in a terrible state & the exhaustion was overwhelming.

Hope you get some answers.

Queencara78 profile image
Queencara78 in reply to Connie75

Hi ya, I completely understand how you have been feeling because I have also had bouts of swelling of my nose and cheeks, sometimes to the extend that my face actually looks distorted. The tiredness has been extreme too and have also had awful muscle pain.

I have two lesion type rashes on my leg that are to be examined through biopsies next week, my Dermatologist thinks it may be mixed connective tissue disease which has terrified me and have my first appointment with Rheumatologist the week after so hopefully will get to the bottom of this, as it has been up and down since being diagnosed with secondary raynauds in December 14

poppykay profile image
poppykay

I had a horrendous butterfly rash on my face for many many years! Also raynauds! I have tried everything from diet, skin products from health shops to medicated via gp! Told to keep out the sun, you name it I've tried it! This was all through looking after two elderly parents, moving house and my boys flying the nest! Both my parents have passed away and life is much calmer! I'm a HSP(please look this up as I feel it's really important to understand if this is you!) A Highly Sensitive a Person!

Since my life is calmer and stress free my rash has gone and my face is amazing! I'm 50 never seen my face look so good in years! I can honestlysay it was stress in my case and alsoMy sister the same! It's so difficult to avoid stress in this day & age I understand, but hopefully if this can help anyone out there .....there is a light!

Connie75 profile image
Connie75

Hi, following on from our conversation many months ago. I ended up very ill again and demanded specific tests. Eventually found out I have Hypothyroid!!!!! 15 months of being fobbed off, I really feel for those who experience years of not knowing what the hell is wrong with them! So.....get your thyroid fully tested, not just general test but full set of tests, don't let GP dismiss your request. Could be answer to your issues, good luck x

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