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.

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Profile picture for rutgersmom123 @rutgersmom123

Yes. My hands will turn purple and my thumb can go almost black. They will also be ice cold. It can be very disconcerting. I will usually wrap my hands in a throw blanket to warm them up. I sometimes will wear gloves indoors.

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@rutgersmom123
I carry fingerless gloves and a hat everywhere, in the house I wear mittens.
Summer a/c blowing on me is a trigger. Thermostat goes up, not down.
This may be helpful if I catch it early. A hat prevents heat escaping and feeling the cold air.
Best wishes to all💕

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Mine is mild in comparison with many descriptions. Had icy hands since childhood and am 86 now. Diagnosis maybe 10 years ago. I keep my house at 70 degrees. Wear sheepskin gloves in the winter and use the “HoHands” and toe warmers. Wear sheepskin boots and thick woolen socks. Calcium channel blockers for migraines turned my fingers white Had to be. a bit forceful in persuading MD to change.
Do others also find their arms are always cold?

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I now live in Southwest Florida....when it is over 70 degrees, my body controls the Raynaud's. When it is less than 70 degrees, the pain...the function....the color....of both my hands and feet are so difficult to control....I have had this my whole life.

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Profile picture for Alta Net @altabiznet

@artemis1886
Hi All, I got Raynaud's in 2021 post COVID-19 Pfizer Vaccine https://www.sciencedirect.com/science/article/abs/pii/S0264410X24011526. Here is a link to an article confirming this association.
The Scientists found genes related to Raynaud's: ADRA2A (alpha-2A adrenergic receptor responsible for vasoconstriction in response to temperature and stress) and IRX1 (responsible for blood vessel dilation). https://www.bing.com/search

From personal experience living with Raynaud's, these measures may work: staying warm, avoiding wind, taking things from the refrigerator with a napkin, warm meals, carrying with me electric Ocoopa hand warmers. You may find online gloves with electric warming inserts.
https://www.ocoopa.com/search

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@altabiznet

I also got Raynaud's post Pfizer COVID-19 Vaccine in 2021. Is Raynaud's your only autoimmune symptom post vaccine?

I also got scleroderma - autoimmune skin thickening - at the same time.

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Reynards……. Almost a 67 year old male. My mother had lupus or slow derma (1922-1969) passed away at 46. I had just turned eleven. Ever since I’ve been 20 I’ve had MS like symptoms many other issues but in 2020 finally had Reynards showing up and scleroderma . It’s affected my hands and genital area. 20 mg of Cialis daily has helped me. Cialis has kept my hands fingers and thumbs from black discoloration and my genital area from getting ulcers on the gland..

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I have Reynaud's for about 40 years. My first clear encounter with it was in my late 30's in the winter because my finger tips split. Sometimes it bled but they always hurt terribly. My doctor at the time told me to dry my hands more thoroughly when I got through washing them. ?? When the weather moderated to 40's and 50's the cracking stopped. Much later I got a doctor that prescribed Nitro-Bid. I use it about 6-8 months a year. I have had my fingers blanch for no reason at all. I have also had bruises form sometimes in the finger tip joint and sometimes on the finger joint nest in from the finger tip. These can be painful. I don't have active disease in my toes; I must keep them warm or they start hurting. What is the long-term prognosis for REynaud's? Mine has gotten worse over the years.

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