My life with primary Raynaud's

[Queenana]

Hi everyone iv had primary Raynaud's for over 20 year now and I used to be so embarrassed to tell anyone now that I'm older I don't mind talking about it I need to wear gloves everywhere I go and in the house in winter I get niffapine from my doctor as it's getting worse the older I get . If I get realy stressed out I take bad attacks that my hanss and fingers go black it's scary .

[MissusTee]

I have secondary raynauds, and nothing seems to help it (over 30 years now with scleroderma). TBH, I've stopped noticing it after all of this time, and I almost ignore it, it's just become part of my life.

[Janpmat]

Hi Queenana sadly i'm the same as you, spend half the time with my fingers in warm water during the winter, and boy do they go black. I can't take Nifedipine, i have heart problems and it doesn't suit me, im also currently being tested for Scleraderma, so I'm not sure if my Raynauds is secondary, I always thought it was primary as I've suffered with it for around 30 years. It can be embarrassing, especially in the supermarket when i have no feeling in my fingers at all and can't manage to get coins out of my purse, but i've stopped feeling embarrassed about it, it's part of me and there's no hiding it, so I don't. Coincidentally I had a Rheumatology appointment today and as I suffer from ulcers on my fingers and he said he was going to book me for an Iloprost infusion. Has this been mentioned to you at all? Ive heard it can be very helpful. Hope you get through the cold winter without too much pain xx

[Queenana in reply to Janpmat]

Iv not been bk to see anyone about it as they just say that he same to me that the only thing that can help is niffapine I don't take them I just try keep warm I'm never out the house get scared that it goes to my feet