Raynaud's & Scleroderma - Care and Support

Trying to find out more about Raynauds

Hi I was diagnosed with raynauds in 2009 when the cold winter hit UK, My fingers/thumbs went purple and I had 'cuts' on my fingertips and my nails broke low.

I had felt the cold for years and had complained to my GP who shrugged me off each winter, I always wore gloves and lots of layers.

GP gave me Nifedipine and referred me to Royal Free. Meds made me so ill, couldn't take.

No one seemed to know much about it.

I suffer with carpel tunnel in left hand due to car accident I had in 1995. My hand is constantly 'cold' I have to wear a glove even in the summer or a 'tightening' band.

Due to an exercise injury (soft tissue injury) on my foot, I now have the same 'coldness' on the side of my foot.

I suffer with pins and needles in hands and feet on a regular basis.

I find it amazing that what I have is so common apparently and under a huge umbrella of auto immune yet there doesn't seem to be a great deal of dedicated information, other meds or options available to help.

I now have to wear so many layers when I go to bed, even in the summer time I have to wear thermal socks.

I don't and never have smoked, don't drink alcohol, health lifestyle and good diet. Exercise regularly, but this gets me down trying to keep any more symptoms at bay.

Anyone else suffer with similar symptoms as me?

2 Replies

Hi Karen

Sounds really bad. Did you attend at Royal Free? I have Raynauds and also I had carpel tunnel syndrome in both hands and it was attributed to the tightness of my skin from scleroderma which was subsequently diagnosed. I had surgery on one hand but I still get the symptoms. Trouble is there are so many manifestations of connective tissue disorder it can take some time to diagnose. I have been prescribed sildenafil to prevent digital ulcers arising from the Raynauds. It does have some unpleasant side effects but not as bad as having frequent and prolonged ulcers, and I try to avoid changes of temperature and of course cold. Hope you can find some answers


Join Raynands and scleroderma sruk as then you can ring them