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Raynaud Phenomenon

Question:

Please describe your experience with Raynaud's phenomenon. Submit Your Comment

Comment from: excanuck, 75 or over Female (Patient) Published: April 18

I first experienced Raynaud's phenomenon when I was around 14 years old, living in a Canadian prairie province, but at the time, it just seemed to be a prolonged case of frostbite. (To warm them up, my dad used to invite me to run my fingers through his hair.) Eventually I moved to SoCal and rarely experienced it again until last year, when I was introduced to metoprolol to control my blood pressure. After a bad reaction to that drug (swollen lips), I researched the drug and learned that I was one of the small group of patients that have a problem with that drug, so my primary care physician (PCP) switched me to a beta blocker (lisinopril). When I looked that drug up, I discovered it was also known to trigger Raynaud's disease, but decided to stick with it because it was small enough to swallow easily, but quickly discovered it also triggers Raynaud's. Until these events started to occur recently, I was never formally diagnosed with the disease and though I will be 80 years old this fall, it has never appeared on my health record, because the symptoms appeared so rarely. However these days, it's not unusual for them to appear almost daily, on one or more fingers and/or one or both hands at a time. In retrospect, they seemed to start almost exactly when I switched from metoprolol to lisinopril. When I mentioned it to my PCP yesterday, she suggested we switch to another ace inhibitor in the same family (losartan). I picked it up at the pharmacy yesterday, but haven't tried them yet. Wish me luck!

Comment from: Dotty, 55-64 Female (Patient) Published: January 20

I am sixty years old I have had Raynaud's phenomenon for a number of years. I've noticed that as I get older it gets worse. Winter is my worst time, I rarely sleep as the pain in my hands and both arms is so painful I have to get up and use my hands to stop the pain. My feet also hurt, and my toes go black if I get too cold.

Comment from: Violetta, 65-74 Female (Patient) Published: August 11

I had Raynaud's phenomenon and chilblains about 50 years ago with nothing occurring since even when I was outside in below zero weather. Yesterday my hands suddenly went glossy bright red. I did not connect the two but later found out it was Raynaud's. So odd after 50 years of no symptoms.

Published: September 10

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!

Comment from: 65-74 Female (Caregiver) Published: November 02

I have experienced Raynaud's syndrome for 35 years. I lived in Chicago and constantly had frostbitten hands and feet. I moved to Arizona 18 1/2 years ago for a warmer climate and the attacks are less frequent. But I've also experienced heat exhaustion for 35 years as well. I would mow the lawn in Chicago and faint. I collapsed at a sports stadium here and the medic on duty told me that Raynaud's attacks occur with heat. I cannot be outside for longer than 10 minutes at a time in hot weather. The doctor also said that my "heating and cooling system was faulty" and that if I didn't stop the heat exhaustion, I would probably have a heat-stroke and maybe die. Now I'm careful with cold and hot temperatures. My dermatologist told me Raynaud's is an immune system disorder.

Comment from: dneath, 35-44 Female (Patient) Published: July 05

I finally moved to the islands due to my illness. I don't know how i managed for so long in such cold climate for too many years. This was the best idea ever! It first started when I was about 28 and has gotten worse as the years went on, my hand and feet infections seem to never end. I don't know why it says that it doesn't hurt when the attacks happen. I know for me it was like sticking ice picks in my digits!

Comment from: Suzanne, 65-74 Female Published: March 07

Spa gloves have been helpful to me. You heat them in the microwave for a few minutes and their warmth brings the circulation back. Wonderful!

Published: September 10

I was diagnosed with Secondary Raynaud's Phenomenon three months ago and am still trying all sorts of products to relieve the outbreaks. I have severe outbreaks and can have up to 10 outbreaks a day. Wind, moderate temps, and A/C all contribute to the outbreaks. The greatest relief for me has been a pair of motorcycle gloves I purchased at the BMW motorcycle store. They are about $200 but well worth it. Their meant for motorcycle riders in colder temps. They plug into the car adapter and warm up the hands in about one minute. I haven't found a pair of gloves yet for outside the car, but my car is my office so it's been a tremendous help.

Comment from: CJD, 45-54 Female (Patient) Published: January 31

I am 47 and was diagnosed with Raynaud's when I was 18. I have cold hands and feet in the colder months and when the weather suddenly changes. In the winter I tend to get extremely cold all over. People think I'm crazy wearing a coat at work. It's terrible but it always gets better under direct heat.

Comment from: catwoman01, Female (Patient) Published: May 31

Very painful. I need to move to a warmer climate.

Comment from: PerfusionistByGolly, 45-54 Male (Patient) Published: January 24

I have had bilateral finger Raynaud attacks since my 20s. Not too often, but usually triggered by damp cold. It does not usually occur when handling cold or frozen items. Frustrating and slightly painful and usually relieved with warm water or hands held under armpits. Right now I am experiencing continuous tingling in almost all fingertips after having been exposed to extreme temperature while snow skiing in Colorado. Has been three days now and I am hoping that some feeling will return soon. My fingers never turned white while on the slopes, but I could not tolerate the cold hands after about 30 minutes outside so I headed indoors. Once I warmed up I thought the numbness in my fingertips would go away as usual but I am still waiting.

Comment from: sseyocean, 45-54 Female (Patient) Published: October 17

I don't know why my body goes nuts, but it drives me nuts! My fingers turn as cold as a soda can from the fridge at work as it is air conditioned to extremes. When I was dishes, my fingers and hands swell. I have been having severe digestive problems as well.

Comment from: sharon, 55-64 Female (Patient) Published: March 04

My finger turn snow white run under warm water turn blue than red, very pain full only happens to fingers and feet, wear warm wool socks to bed every night even in the summer. Can be very painful.

Comment from: 35-44 Female (Patient) Published: April 22

I was diagnosed with Raynaud's Phenomenon on 2/21/10 by a vascular surgeon in Colorado. I thought I was going to lose it but apparently I already did. I haven't had feeling to 5 of my fingers, 2 of my toes, the left side of my face and my lips for 3 months now. Initially, I waited for several weeks to see my primary doctor because I thought that every morning that I woke up, everything would be OK. I spent the 1st 6 weeks crawling on my knees to the bathroom. This is serious. I go to the Rheumatologist soon. I cross my fingers!

Comment from: Evelyn, 65-74 Female Published: February 16

Often, blood fails to reach the ends of my fingers and my toes.

Comment from: debbie, 45-54 Female (Patient) Published: February 08

I am 44 and have been suffering from Raynaud's since 2001. Unlike the other commenter's my Raynauld's does not trigger with cold. In fact we have been trying to figure out what triggers the attacks for years. Sometimes I trigger from chemical exposure (using bleach or another product 2 clean) or coloring a picture with the kids. My hands swell up and turn red, white or purple. I usually am woke up with it- and hot baths or showers help me a lot.

Comment from: charlie, 45-54 Male (Patient) Published: January 12

I am 51, active and fit, no apparent diseases, and have experienced Reynaud's (phenomenon) for over 10 years. I experience it just about every time I handle something cold, like carrying frozen foods from the grocery store, or when I am slightly chilled. On the other hand, I can go for a run with no gloves in below freezing weather and my hands will be fine. My fingers look exactly like your photos describe when it happens. I can accelerate the restoration of circulation by soaking my hands in warm water. I have discussed this with my physician and owing to the fairly minor severity he doesn't suggest any treatment. What a stupid way for my circulatory system to behave!

Comment from: AlwaysHopeful, Female Published: October 11

I am a 25 year old female who has been suffering with Reynaud's phenomenon for over two years. After I was diagnosed with this, I quickly found out I had lupus as well. It's the worst feeling ever! My fingers and toes would lose feeling and turn white then purple if the temperature is cold. I am constantly in pain when the tips of my fingers turn gangrene. This happens usually in the fall and winter when it is cold. This can also be caused if my finger is cut or hit slightly. Most people do not realize how hard and painful Reynaud's can be. I have quickly realized how much we use our hands for everything we do. I have been checking to see if anyone is working to find a cure but I am not successful. It seems no studies are being done and it makes me sad due to the fact that this is such a serious problem. The only thing my doctor can say is keep warm.

REFERENCES:

Hughes, M., and A.L. Herrick. "Raynaud's phenomenon." Best Pract Res Clin Rheumatol 30.1 Feb. 2016: 112-132.?

Wigley, F.M., and N.A. Flavahan. "Raynaud's Phenomenon." N Engl J Med 375.6 Aug. 11, 2016: 556-565.

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