Patient Comments: Raynaud's Phenomenon - Describe Your Experience

Please describe your experience with Raynaud's phenomenon.

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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Comment from: KVM, 55-64 Male (Patient) Published: January 23

I am 55 year old male and have lived in western Canada all my life. I am very fit, active and have no other health concerns. As a kid I would play outdoors in the cold for hours... just got used to having cold/numb fingers and toes. Sometimes I suffered damaging frostbite, however. It was about 15 years ago I found out a name for the conditions that gives me cold, white, tingling fingers and toes in conditions that didn't affect others. What makes it worse: 1) fatigue and 2) recent Raynaud's "attacks" make me more susceptible to the next one. From October to April I will have an attack almost every time I go outdoors, even for 30 seconds. What makes it better: vigorous exercise. Keeping warm is important. Acupuncture and foot massage help. Hot water bottle in the foot of the bed is helpful.

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Comment from: Mistyblue, 45-54 Female (Patient) Published: December 17

I've had Raynaud's for over 30 years. I was told then that there was nothing to do about it. So, I just try to keep warm. I wear mittens, which keeps my fingers warmer because they are together, and I use hand warmers. I try warming my hands up real good before I go outside, and that helps a little. When my fingers do turn white, I never rub them, because I was told this would kill the blood cells. I always use heat, warm water, or shake them. While warming up, the blood will first fill up the outside edges of my fingers, and then go back and fill up the middle. My fingers will turn black and hurt as the blood is rushing back, but then be ok after that. I always sit on my hands if they get cold, and that helps them to stay warm. I just ordered some battery operated gloves and will see how they work. It's been a struggle, but I'm learning as I go.

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