Hi all - I just clicked on a link from a previous posting on here to sruk.co.uk only to find.... MY HAND staring me in the face! Was quite funny! It’s from 5yrs ago. Then I noticed the link to my raynauds story underneath! I was very happy to help the PR team at SRUK following their request on here last month for us to share our stories - but v odd to see yourself without warning 😆. Hope it helps... Fame at last! D
It’s me!! : Hi all - I just clicked on... - Scleroderma & Ray...
It’s me!!
Wow that must have been weird! This means I posted your hand on my FB for Raynaud’s awareness month to raise funds for SRUK!
Your story is very different to mine. I had my first Raynaud’s attack in hands in my late 40s after a Tai Chi session. I had just taken my first methotrexate for RA the previous night and wasn’t feeling particularly great - cold and tired.
So I went to make tea for the group and I was running the tap when I saw 3 of my fingers had turned pure white. I’d never seen anything like this so showed my friend who thought it was Raynaud’s. Later I tried nifedipine and Sildenafil - even though my fingers rarely went white or numb. I was told the burning pain in my hands and feet were still probably Raynaud’s by my GP. I couldn’t tolerate either drug at all,
I now have antibody for systemic sclerosis overlapping sjogrens but still only occasionally get pure Raynaud’s in my hands - more Erythromelalgia and neuropathy. My feet are worse for Raynaud’s though. I get Iloprost infusions 3 monthly and they have been nothing short of miraculous for my pain and very few Raynaud’s attacks now. X