Raynaud's Syndrome: Anyone want to talk about Raynaud’s?
Anyone want to talk about Raynaud's Syndrome? My daughter has a severe case of it. I would like to start a support group here on Connect to find others, share our stories, treatments and managing daily life.
Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.
You should see a rheumatologist for further testing to see if there’s anything else going on.
My heart goes out to you, figuring out how to manage an illness is challenging. I would be scared if a nurse told me my symptoms are associated with RA and didn’t give me more information.
With that said… I cannot tell you what type specialist can help you. Appointments for new patients usually takes months unless you have a referral.
Have you considered writing down your questions and calling the nurse?
Take care of yourself.
mittens are definitely better than gloves because you can rub you fingers against each other and create at least a bit of warmth.
I’m so sorry. There is definitely something wrong with the picture.
I suffer from the cold. I have cold induced urticaria (cold = hives)but lately my feet freeze and turn red and blue. And then my hands. It’s sooo very uncomfortable.
My Podiatrist said "Yes, that's Raynaud"s and youi're right, no one can treat it". Mine's been going on since 1966, but I was self-diagnosing (no one capable of diagnosing me) until I moved back north from Florida,,,where they REALLY treated Raynaud's as a pre-amputation condition, only (I wonder where all the non-amputation patients were? Or did they think people just woke up to bright green or neon purple fuzzy toes and rushed to a surgeon???) Fortunately the doctors here in CT have seen it and know it, but still can't really treat it. Palliative care. My Rheumatologist said keep warm, 2 pairs of socks, feet warm in bed....but then she gave me a wee bit of help by asking if I wanted to try medical mar ijua na. with t h c. I did, but it seemed to conflict with my other meds. Perhaps you'd do better.
@sdiane I just found your comment from August 16. You’ve joined this particular discussion group just by signing in and posting! But you might also look for other discussions on Raynaud’s Disease because they have lots of good information. You may even find some answers to the questions you asked in this discussion. Welcome
Where would I find dis Russian about raynauds
Sorry discussionon raynauds
My big toe Suddenly became extremely painful and purple. It just started one night in the last 60 days. No symptoms except that my toes will wake me up from pain until I drape them over the side of the bed. After awhile the pain will subside. My PCP gave me amlodipine but that is not helping very
Much as it has now
Spread to all of the toes on my right foot. I wear socks and compression socks but to no relief. I. Fact
The compression socks seem to aggravate it. I was told
To wear those by a nurse who
Specializes in rheumatology. No one seems to care except my husband and me.
Anyone tried PBM (Photo Bio Modulation) therapy using a full body NovoTHOR bed? I have a friend with Raynaud's and she gets relief from this. She uses it a lot in the winter time (we are in the UK).