Patient Comments: Raynaud's Phenomenon - Describe Your Experience

Please describe your experience with Raynaud's phenomenon.

Comment from: California Girl 1957, 55-64 Female (Patient) Published: May 12

I have systemic lupus erythematosus (SLE), secondary high blood pressure, and secondary Raynaud"s phenomenon, and at least once or twice a year secondary bronchitis that sometimes goes into pneumonia. I also get migraines from both hereditary reasons and from the 6 disintegrating neck vertebrae due to an old work injury. I"ve had the Raynaud"s as many decades as the lupus. It"s been better and worse over the years. It affects both hands and both feet. They turn cold, white and sometimes blue. I"ve had periods of time when my legs and fingers were itching, burning, painful, ulcerated, bleeding, and split open and took months to heal, sometimes just to ulcerate or split open all over again. Limiting time spent on my feet helps. For the last 2 years the problem is markedly worse on my left side. It does not improve if I"m sitting or lying down. My left hand, and especially my entire left leg, worst of all my left foot, turn ice cold; sometimes with numbness, sometimes not. Others can feel the marked difference in how very cold my left extremities are, especially my leg and more so my foot. The only solution that helps is wrapping those extremities in a blanket to warm them. Wearing a sock to bed also helps my left foot. I am concerned as to why my left side is now so dramatically affected, while my right side is much more mildly affected.

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Comment from: Stacey, 35-44 Female (Patient) Published: March 18

Although I"ve never been diagnosed by a doctor, I know my condition is Raynaud"s. When my hands get cold for any reason, several fingers on both hands turn white and cause mild/moderate pain. I also lose sensation in those fingers. I usually try to warm my whole body in those moments by drinking hot tea, adding layers of clothing or a blanket. I definitely am a mitten person my fingers can"t be separated when it"s cold! I"ve found that as I get older, I"m now 43, more fingers are affected than when it first started about 10 years ago. When I"m home I can get relief fairly quickly, but when I"m skiing it can last hours.

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Comment from: Nikki, 19-24 Female (Patient) Published: February 14

I"m a 21 year old female. I was diagnosed at 16 with Raynaud's phenomenon. My fingers, toes and ears turn red, then purple, then almost black when I"m exposed to any kind of cold. It"s extremely painful and I often lose the feeling in my hands. I get chilblains and frostbite on my toes and recently on my index finger on my right hand. I shake uncontrollably when stressed and trying to warm up is very difficult. The only times my hands are warm is when I"ve just exercised and in heat waves. I can put my hands on radiators for up to fifteen seconds before they start to burn. I have frequent muscle spasms which may or may not be related.

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Comment from: Leigh, 55-64 Female (Patient) Published: January 31

As far as I can tell, I've had a mild version of Raynaud's all my life. As a child, I thought it was normal to have numb fingers and toes after going outside in the winter. As an adult, I experience problems only in the cold weather. I find that eating a cold lunch + a cold drink in the winter will almost always trigger an attack. Going outside in the recently brutal cold sets it off within 10 minutes. Running my hands under very warm water has been my saving grace. I am also a runner and have noticed that in cold weather, my hands of course start out cold but after the 20 min mark, there is a marked warm up. Guess that is part of the Raynaud's cycle.

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Comment from: Bridget, 35-44 Female (Patient) Published: January 29

I have had Raynaud's for 16 years now and what has worked the best for me is Viagra. It increases my blood flow and warms my whole body up quickly. I initially had to convince my doctor to let me try it on a trial basis, but I am so glad I did. It isn't approved for insurance reimbursement for women, but it works like a charm when I take it about 30 minutes prior to entering a cold environment. I now have a prescription for PRN (as needed) so I can just take one when I know I will need it. It is expensive so my doctor gives me the highest dosage so I can split a pill in quarters and make them last longer.

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Raynaud's Phenomenon - Treatments Question: What was your treatment for Raynaud's phenomenon?
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