Fibromyalgia and sweet syndrome together?

[charlie01]

Hi, I haven’t posted in some time. I was diagnosed with sweet syndrome last year, hospitalized and put on prednisone and I’m now on colchicine which has helped to keep the sores from getting so bad. I was wondering if there are others with both fibromyalgia and sweet syndrome as well?

[Badbessie]

I do hope you find someone. From memory I only came across 1 case in 25 years whilst working in the NHS. It is a fairly rare condition from my understanding.

[charlie01 in reply to Badbessie]

According to the national disease Center there are only some 300 known cases of sweets syndrome. My guess is that because it is so rare there hasn’t been very much research into it.

[Badbessie in reply to charlie01]

I can remember the consultant saying you will never see that again. On asking why he stated that he was the only doctor in the department that had seen it and needed to look it up himself.

[Badbessie in reply to Badbessie]

Charlie01 there are a couple of websites that may help you find more information. Type in NORD ( National Organisation for Rare Disorders). There is some good general information and links to research. It may help you.

[YASMINTINA FMA UK Volunteer]

That looks very sore, I hope they help you with the right treatment very soon . Take care .

[charlie01 in reply to YASMINTINA]

Thankyou

[2DOAon510]

Hi Charlie ! About 10 or so years ago I developed very ugly nasty painful and very colorful sores on my lower legs. ( purple..red ..yellow..) I have Crohn's disease so my Gastro sent me for a biopsy. ...thinking it was probably something related to my disease. They sent the biopsy to a very good teaching hospital and what I got back was 3 different diagnosis ! Erythema Nodusm...Pyoderma Gangrenosa..or Sweets Disease ? Talk about confusion.

The Dermatologist wanted me to take 60 mg of prednisone and then taper. Well I just had come down from that high dose for a flare of my tummy issues I was NOT game to start back up ! I was at 20 mg and I continued weaning down . Now some years later I also have been diagnosed with Fibro too ? Hmmmm

I was bothered on and off for about 2 years and eventually the sores just got better and faded away. Go figure(...I'd add a picture but don't know how .)

I hope yours fizzles out like mine did . God Bless...

[charlie01]

Thankyou

[charlie01]

I’ve been keeping a journal to see if I can figure out any triggers. I found that being out in the sun and stress are my main triggers. I’ve been working very hard to avoid both and my outbreaks have been few and far between. Thankyou for your reply. Wishing you health and happiness.