Patient Comments: Raynaud's Phenomenon - Describe Your Experience

Please describe your experience with Raynaud's phenomenon.

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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Comment from: ccc1027, 25-34 Female (Patient) Published: December 06

I have had symptoms of Raynaud's phenomenon for three years - mainly in one foot, starting in the pinkie toe and the colder it gets, the fourth and third toes change colors as well. I also get it on the same side in my pinkie on my right hand. An aunt of mine also has Raynaud's, and actually developed it the same year that I did, but hers is even worse than mine, requiring treatment for cuts and pain caused by the syndrome.

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Published: July 08

I am 24 and I live in Kentucky. I was diagnosed with Raynaud's when I was 16, and was told that there was nothing that I could do but live with it and try to stay warm. What people didn't understand is that it could be nearly 100 degrees F. outside and my fingers and toes would still freeze. It is the most miserable feeling in the world to be cold and in pain all the time and there is nothing you can do about it but sit and wait for it to go away. Luckily, when I got married in September, my insurance changed and I had to find a new doctor. How lucky was it that the provider I chose had written a thesis in college about Raynaud's phenomenon! She prescribed "Nifedipine" for me and I rarely have any problems anymore. The only side effects that I have found is that my heart races for a few moments after it kicks in and sometimes I get leg cramps. I still have symptoms, but only a few times a week compared to the 10 times a day before I started the medication. My life has almost done a complete 180!

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Comment from: GrammaAnn, 65-74 Female (Patient) Published: February 17

I wonder if anyone else Raynaud's phenomenon with has gotten white bands across the fingernails and toenails. These appear to be permanent. The doctor upped my calcium channel blocker and everything else improved significantly but the white bands are still there.

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Comment from: coldhandswarmheart, 45-54 Female (Patient) Published: May 23

I have had symptoms of Raynaud's phenomenon for many years, as do my father and his siblings. Last year I was found to have a vitamin B-12 deficiency and started having injections. After my first injection the symptoms of Raynaud's decreased dramatically.

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