Patient Comments: Raynaud's Phenomenon - Describe Your Experience

Please describe your experience with Raynaud's phenomenon.

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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
Published: July 01

I'm 13, and I have had the condition since I was about 6. It used to happen to only one of my toes. It would turn numb and white. Then a while ago, it started affecting all of my toes and the heels of my feet. The other day I was swimming in pretty cold water and my fingers turned white as well. I have never experienced pain or red and blue coloring, thank goodness. I just have to be careful in the winter and in cold swimming pools.

Was this comment helpful?Yes
Published: June 30

My daughter was diagnosed at 4 months of age. The soles of her feet and hands were very dark blue. She is now 5 years old. Some days are hell for her, and she will just sit and cry in pain. She says it feels like pins and needles that never goes away. Winter is worse for her. She drinks green tea and that seems to help. She always wears shoes and at nights she puts her shoes on her bed so her feet don't have to touch the floor. She is coping well, but now we're testing for secondary things that can go hand in hand with her Reynaud's phenomenon.

Was this comment helpful?Yes
Published: June 27

Have pinched nerves and nerve root in back with spinal stenosis. Last November both feet became very tender with blister-like sores under toes. Color began changing to purple and red, but I have not noticed the white. Feet, toes and heels very sore and I feel hot even when cold and like standing in a patch of stinging nettles. I am seeing a specialist in July. I would like to know if natural treatment exists.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

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?

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.


Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.


Health Solutions From Our Sponsors