Patient Comments: Raynaud's Phenomenon - Describe Your Experience

Please describe your experience with Raynaud's phenomenon.

Published: July 23

I am a 39 y/o male and was told 4 years ago I have Raynaud's. In winter my toes turn white and blister like ingrown toenails. When the blood starts to flow through the toes again, my toes feel like they are on fire and very painful until they are normal again. I wear 2 or 3 pairs of socks and wooly shoes at home. If anyone has this and has to work outside like me, I brought some waterproof socks called sealskins and put them over 2 pairs of woolly socks and no matter how hard it rains my feet stay dry and warm. I also take medication over winter which helps a bit but wearing lots of clothing to stop the cold hitting the area is the answer and once I knew what I had, it was easier for me to protect myself and limit the pain.

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Published: July 16

I am a 37 year old female and was diagnosed with Raynaud's syndrome about 4 years ago. In cold weather, my toes and fingers turn completely white and are extremely painful. It feels like pins and needles and severe aching. I can't even walk until the blood returns to my toes. No one understands how intense the pain actually is. Lately I have been having attacks in the air conditioner. I have also been diagnosed with a connective tissue autoimmune disease, which Raynaud's can be a symptom of.

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Published: July 11

I found out in the last couple of years that Raynaud's phenomenon has affected my hands and fingers. I play golf, and on mornings when it's under 50 degrees, the blood circulation in my fingers almost stops completely. I will go four or five holes before the blood flow starts again, which is followed by a stinging sensation in the fingers lasting 15 to 20 minutes.

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Published: July 10

This disease is absolutely awful and depressing. I suffer all day. The only time I have relief is minutes after waking up and minutes after lying down and being in a hot bath. The rest of the day I am trapped inside a body that can't regulate itself. I am constantly irritable. It starts out physiologically with capillary constriction and then turns into mental distress where my extremities look like a walking road map not to mention the discomfort. I can't stand the fact that there is no treatment. I have tried several vasodilators but they don't work. I have tried warm clothing but as all of you know as soon as the capillaries open up you become irritably hot and the clothes must come off. I can't spend my life lying down, in a hot bath and taking clothes on and off.

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Published: July 08

I was diagnosed with Raynaud's about 3 years ago. I dread going outside anymore...even in the spring and autumn...as the slightest breeze sends me into cold spasms. Living in New Zealand has been difficult in the winter as heating is extremely expensive. When I was diagnosed with Raynaud's, I also had bruise-like markings on my upper leg. The doctor who diagnosed me said it was dry skin. A few months later, the bruises became darker, hard and spread. Turns out I have a disease called morphea that affects 1 in 100,000 people. Nobody is sure what causes it but say they see it in patients who have Raynaud's.

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Published: July 08

My mother was diagnosed with Raynaud's about two years ago. It has become so bad that her left middle finger was amputated. We live in California, and even in the hot summers she stays up all night with severe pain in her fingers. It's hard to see my mother cry night over night telling me how much her fingers hurt. Like I mentioned it's getting worse, her right pinky began turning red then blue and is now in a stage of a charcoal black color. We are seeing a specialist at U.C.L.A who are running tests and doing the best they can.

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Published: July 02

I am now 65, living in the UK. I was diagnosed with Raynaud's disease in my 30s.Both my hands suffered all the described symptoms and I had acute pain. I was given the choice of living with it and risking gangrene and losing my fingers or having two operations to treat it, both sides. This was a cervical sympathectomy which cuts the nerve carrying the cold messages to each hand. I chose that and had the two operations. They were partially successful. My left hand is better than my right. When it's cold, I get some recurrence but much less than before the operations. I've never met anyone else who has the illness or treatment.

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Raynaud's Phenomenon - Treatments Question: What was your treatment for Raynaud's phenomenon?
Raynaud's Phenomenon -Symptoms Question: What symptoms have you experienced with your Raynaud's phenomenon?

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