Patient Comments: Raynaud's Phenomenon - Describe Your Experience

Question:

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

Comment from: Mary Ann, 65-74 Female (Patient) Published: May 27

My father had Raynaud’s phenomenon, so wasn't surprised when I started experiencing it in my fingers and toes. Additionally, I have found that a blood draw is also problematic. I have learned to wind my hands around windmill style for 50 counts or swing legs similarly. I no longer have the issue with toes; but the cool rainy weather in the Northwest is more likely to cause the white and blue symptoms. Cold dry weather rarely elicits the same effect. Every coat and jacket I have has gloves in them.

Comment from: JoyceMarie, 55-64 Female (Patient) Published: March 25

I am 64, female, and I've only started noticing my fingers tips and middle joints turning white, but I've noticed my toes are always purple. This does disturb me a lot, as coronary artery disease runs in my family. I haven't consulted my doctor about Raynaud's phenomenon yet, but plan to next visit. I have noticed it usually appears only when I go out in the cold. It is very painful, numb, tingly and stinging. Running them under even warm water is painful.

Comment from: tsyoung27, 35-44 Female (Patient) Published: April 01

I am 37 and just recently diagnosed with Raynaud's phenomenon. I am a little bit different than everyone else in my symptoms, as only my fingers down at the bottom of my nail go purple. It happened about 3 weeks ago and they have stayed purple. They get a darker purple in the cold. I don’t get pain or numbness and even in the hot shower they stay purple. I do get an overly warm feeling in my hands once out of the air-conditioning and my feet get the warm feeling as well, though my toes haven’t changed color.

Comment from: Grand mimi, 65-74 Female (Patient) Published: July 13

I have been diagnosed with Raynaud’s phenomenon. I believe walking to school in cold, snowy weather may be the cause. My hands and feet are always cold. My feet get cold instantly in cold weather as do my hands. What concerns me the most are my toes, they turn blueish black. In warm weather if I wear tennis shoes my toes and feet have a burning sensation in them. I’ve had a test done on my legs because they ache being on my feet too long, but blood flow was good.

Comment from: Pam 56, 55-64 Female (Patient) Published: July 10

My feet stay blue all the time and feel cold. I have excruciating pain in my feet like there are pins and needles in my feet and legs. I have days when I can’t stand the pain. I will be seeing a doctor this month, but it sounds like it is Raynaud’s phenomenon. I live in Arizona when in the summer it is over 100 almost every day. We have to run the air conditioner every day. I will get very hot, but I have to have my feet covered.

Comment from: Cynthia, 55-64 Female (Patient) Published: January 02

When I get cold my fingertips hurt. They turn light yellowish color and my toes become cold too. I wonder if Raynaud's phenomenon causes it and if there is something that can help me.

Comment from: Helena, 45-54 Female (Patient) Published: December 20

With Raynaud's phenomenon I'm having pain like needles pricking, in my face and bottoms of my feet. I get real pain but like a burning sensation in my fingertips, and needle pricking too.

Comment from: In pain, 55-64 Female (Patient) Published: July 10

I have excruciating pain in my feet and legs. They always feel like I have pins and needles sticking me. I see the doctor on the 24th. I believe it is Raynaud’s phenomenon. I already take Norco and wear a fentanyl patch for back pain. This does not seem to help much with the pain. I also wear socks all the time to keep my feet warm. I live in Arizona so we always have our air conditioner on during the summer. I try to describe the pain but people don’t understand. I don’t even try to explain it anymore.

Comment from: Harley, 55-64 Female (Patient) Published: June 12

My feet, hands and nose get ice cold. Sometimes I feel alright. The 2nd horrific symptom of Raynaud's phenomenon is when my feet and hands get bright red, and I have burning sensations, pins and needles, especially in the morning. My doctor also believes I have fibromyalgia. But I'm seeing a vascular surgeon to make sure. It is all so confusing. I'm 63 and what a painful experience this is! Wishes to you all.

Comment from: Unsettling , 35-44 Female (Patient) Published: May 11

I am a 41 year old female. I have had cold hands and feet all my life but I recently started seeing changes in my hands and feet such as redness and burning. I work in health care so I just associated it with that until I noticed my hands turning black white and purple. Some of my coworkers mentioned Raynaud's phenomenon. I'd never heard of this before but it was completely depressing because I was told there is surely some other underlying reason. I have been back and forth to the doctor since November and all my tests are still negative. Walking around the hospital for 12 hours is difficult to do because my feet burn. Even driving is hard trying to keep my hands on the steering wheel. I have burning in other areas that feels like someone is holding a lighter to my body. My biggest concern is what type of quality of life I will have. It is very difficult to deal with.

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Comment from: Christine, 55-64 Female (Patient) Published: May 02

Raynaud's phenomenon started when I was 14. I am now 56. I smoked from the age of 15 to 40. It did not seem to worsen or get any better after I quit. However, I have lived in Calgary, Vancouver, Halifax and Penticton. For me it seems worse in damp cold weather, Halifax and Vancouver. Sometimes I can be out for hours and my fingers and toes are fine, other times I just have to go out to the car and one or two fingers turn white for the trip. I have heat blasting through the vents with my fingers held up to it. Lately, here in Penticton my fingers turn more often purple then white. Also, recently, I have noticed that when I get in a hot tub my fingers are red/purple, molted. In 2011 I met with a naturopath who was convinced it was a psychological phenomenon. My grandmother had some trouble with it in her later years, in her 70s, my mother started getting it in her 60s and my sister in her 50s. I find it a nuisance but it hasn't stopped me from doing anything outdoors. I was also told that it was a problem with nerve endings rather than circulatory. I was told that Terry's Nails could be a result of Raynaud’s. Terry's nails is when the nail turns white and there is a red rim at the tip of the finger under the nail. The other reason given to me for having Terry's Nails was liver disease.

Comment from: julie, 45-54 Female (Patient) Published: March 16

I am 49 years of age, just diagnosed with Raynaud's phenomenon. My fingers are purple at the tips and hands are red with white blotches and it hurts. I am doing pool therapy and when I put my hands in the water it feels like I am being stabbed with thousands of tiny needles, which feeling is called paresthesia. The other feeling is creepy crawlies when the feeling comes backs after my hands are freezing cold. Even wearing gloves outside does not help. I am taking amlodipine and other medicines. I will be starting hand therapy and seeing a vascular specialist. I do not know how I got this since I do not know family history.

Comment from: Ellie, 65-74 Female (Patient) Published: February 21

I've had Raynaud’s phenomenon for over 45 years but lately my fingers are turning white a lot more often. They go numb and it is difficult to get them back to normal colors. I am 72 and healthy, take no drugs of any kind, don't smoke or drink. I was diagnosed in my 20s and I always associated it with the strong dose birth control pills they put us on in those days (the first birth control pills). No other part of my body seems to be affected.

Comment from: Roberta, 55-64 Female (Patient) Published: September 07

I started having Raynaud's syndrome years ago, when I was in school. At the time, I didn't know what it was, I just knew that after having gotten my feet cold playing outside or waiting for the school bus in winter, and having my toes go white, they then became red and swollen and very painful. Because they felt hot, I tried soaking them in cold water, which provided temporary relief but probably actually made it worse and prolonged the pain in the long run. Later on, my older sister was diagnosed with Raynaud's, and I realized my symptoms were the same as hers. It was strange, because I could go outside to shovel snow or do something active at ten degrees and have no problem, but sitting still in the house at 64 degrees could make my toes go white. Just picking up a can of frozen juice could trigger it in my fingers. It's gotten worse with age. It's only been in the last year or so that I've ever had my toes turn blue. Usually they just go from white to red. Eventually, my sister told me she'd found that taking folic acid helped, and I found it helped me, too. The dosage of folic acid I'm taking is 800 mcg per day. Sometimes I get 500 mcg and take 2, or if my Raynaud's syndrome is acting up, I might take two of the 800 mcg for a few days and then go back to one. I now keep the heat ducts in my car aimed towards where my hands are on the steering wheel, but don't turn on the heat until the engine temperature is up, so as to avoid blowing cold air on my hands. I wear mittens instead of gloves in winter whenever possible, and if my hands get cold, I warm them up. I wear warm socks to bed. In cold weather I try to remember to check my toes before I go to bed, and if they're not pink, I try to get the color back before I go to bed. A hot water bottle would work, too. I find the best way to prevent it from getting worse is to get the circulation back into my fingers and toes as soon as I notice it's gone. The longer the circulation is interrupted, the more tissue damage there will be, and the longer it will hurt afterwards. I find it takes a good ten days for the pain to subside if I don't catch it in time. If I miss getting them warmed up in time and get the aftermath swelling, I find slathering them with something like Bag Balm or Vaseline helps relieve the pain somewhat. If my toes are swollen and painful, I 'milk' the blood out toward the tips repeatedly, as I would if they were white, only I do it several times even though my toes are already pink or red. The first time is usually rather painful, but each time I do it, it gets less painful until finally most of the pain is gone, and usually doesn't come back.

Comment from: polly1958, 55-64 Female (Patient) Published: June 15

I was diagnosed with Raynaud’s phenomenon in 1993. I was 35 then. I am 58 now and I have it in both my hands and both my feet and it goes up my leg about 6 inches. I have the pain almost every minute of every day in my hands or feet or both. I am at the point I cannot stand the pain anymore. I have a doctor that I do not think understands how bad this can get.

Comment from: Rick, 55-64 Male (Patient) Published: November 17

I have bluish fingernails most of the time. Sometimes my toes are cold and feel achy. I suffered trench foot in both feet when I was still relatively young, and that doesn't help. My feet have gotten cold easily ever since. I nearly lost my toes as they turned black and swollen but eventually recovered. I now have Sjogren's syndrome (SS) and I think that is causing Raynaud's phenomenon but I haven't been diagnosed with Raynaud's yet. I'm wondering how many people with SS and/or Raynaud's have bluish fingernails all the time.

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Comment from: Rynda, 35-44 Female (Patient) Published: June 28

I rarely had any symptoms of Raynaud's phenomenon before pregnancy, and it was at its worst after my second child was born. I would often have symptoms any time a cool breeze hit me or I walked into the grocery store, or have a chill for whatever reason. I might have two months out of the summer that I would have no symptoms. At the same time I was dealing with bad varicose veins, one of which was ulcerating for two years. After I had that vein removed, in order to correct the ulceration, I noticed a marked decrease of symptoms. I have not had any symptoms during the six warmest months of the year and only two months of the winter have I experienced frequent episodes. I still have significant varicose veins which may be why I still have issues, but I am thankful that they are greatly reduced.

Comment from: trixie, 45-54 Female (Patient) Published: April 19

I was diagnosed with Raynaud's phenomenon 4 years ago. Months earlier I was diagnosed with ulnar nerve damage. The two have similar symptoms, pain, numbness and tingling running down my arms. I work as a bartender and it adversely affects my job. My hands are constantly exposed to cold temperatures. I'm handling chilled glasses, cold beverages all day long. I try to keep a mug of hot water close by at all times to warm up my hands. I wear wool socks 12 months a year to try to keep warm. It is painful and depressing. I can’t feel my feet when I walk, I feel like a trip hazard. I am looking into nifedipine because it is affecting me in summer months as well.

Comment from: Dale, 55-64 Female (Patient) Published: June 09

I just started having symptoms of Raynaud's phenomenon in one finger. It started after wiping off my snowy windshield with very thin gloves. My middle finger turned white and I lost feeling in it. I put it under warm water for a few minutes and the color returned. Since then, same thing happens periodically, if my hands get a little cold. It's not very predictable, it doesn't happen every time they are cold. I have found that heating it slowly doesn't work well. But I have found massaging my finger works pretty fast. I hope this helps someone who may have similar symptoms. I have not been diagnosed or seen a doctor for this. It just started this past winter. I am 61 years old.

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

I developed Raynaud’s phenomenon about 2 1/2 years ago when I was diagnosed with mixed connective tissue disorder. I just wanted to say to those of you who live in the Northern states, I live in Texas and it doesn't make much difference. I have never taken a medication specifically for the Raynaud’s because of some of the side effects. I have tried the things others have mentioned when it gets bad like the heating pads in my gloves, waving my hands/arms around like a plane getting ready to take off; it's just super annoying. I've noticed mine will flare in the mornings when I get up from the warm bed to a room that's just normal temperature. The worst is when I'm trying to fix a meal and have to handle cold meat or fresh vegetables. I try to avoid holding a glass with a cold drink without a protector around the glass. When I go to restaurants now I just ask for water with no ice.

Comment from: raynaudsinny, 55-64 Male (Patient) Published: January 05

I developed Raynaud's disease over 10 years ago. At first it only involved my fingertips. Gradually it involved my entire fingers and toes. Usually cold triggers my attacks. Now it often involves my toes plus most of my feet. I experience the color changes plus numbness often followed by pain (which can be quite bad at times). Soaking in warm water helps, although soaking my feet often isn't possible.

Comment from: lonestarjenn, 7-12 Male (Caregiver) Published: November 25

My son has had what would be considered mild Raynaud's phenomenon, since he was about a year and a half. Although his response to the horrible pins and needles that affected him nightly was not mild; in his sleep he would run through the house screaming at the top of his lungs, jumping up and down and shaking his hands. He never woke up, had no recollection of it happening and at the time, my hubby thought he was just having a temper tantrum because it always happened at the time I got home from work around 12:30 to 1:00 am. I would take him outside with a light blanket and walk to the end of the block and let the cool night air hit his face and it seemed to help calm him, or wake him, I don't really know. I did research and got the feeling it was night terrors from a small bladder since his going to the bathroom seemed to help calm him as well. We dealt with this for 8 years before we got a couple different doctors to really help. They found that it was Raynaud's and prescribed nifedipine for him to take at bed time. It worked like a charm! No more screaming in the middle of the night, and no more going up to the bathroom and getting in the tub and running the water to adjust his temperature, to get the pins and needles to go away! However, Medicaid takes 3 weeks to get it approved! They are still not being helpful at all.

Comment from: Landscaper, 45-54 Male (Patient) Published: November 20

I work outside and have had problems with cold for 20 years. I was diagnosed with Raynaud's phenomenon about 8 years ago. I started to have problems with 50 degrees. I have more serious problems with my feet then my hands but both are a problem. My hands have numbness and moderate pain. At least I can put my hands in my pockets for quick relief. I buy very good quality ski gloves made for extreme weather, they make a difference. My feet either have numbness or severe pain that feels like blisters that someone is pinching. The most effective help is, don't let them get too cold, it is hard to recover. I use ThermaCELL inserts for shoes and boots, they are rechargeable and work great. Inside, I wear warm slippers. I go from one to the other, all winter trying to retain the heat. It helps and I have less pain. Hope this helps someone.

Comment from: Hd, 25-34 Female (Patient) Published: October 07

I have been very recently diagnosed for having Raynaud's symptoms although I was suffering every month from May. The first time I had pains was after a hard prick during a blood donation camp. The pain in the night and the numbness to both my forearms was so high that I felt almost paralytic. My doctor first thought it’s an infection to my right hand index finger but later they concluded it was due to repeated stress injury. The attack lasts for 3/4 days a month and the frequency is now reduced to less than a month now. I changed the doctor and he diagnosed me with Raynaud’s phenomenon. I have been asked to do a color Doppler imaging and then to meet him again with the reports. Let’s hope to get rid of it faster. It has affected my working ability especially when we mostly are techno savvy people.

Comment from: clweidmann03, 65-74 Female (Patient) Published: August 08

I've always seemed to feel cold more than others. I am teased about it when I take sweater with me. I do not have a problem with my fingers turning white but sometimes 2 or 3 of them will be numb. I had noticed for a long time that when I picked up my foot to wash it in the shower it was purple from the toes into the ball of my foot. I finally mentioned it to my doctor and was diagnosed with Raynaud's phenomenon by a vascular surgeon. I have not seen this symptom mentioned by your other patients. I wonder if Raynaud's could be the cause of my always aching arms and legs.

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.

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.

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.

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.

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.

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.

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.

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.

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!

Comment from: melissa, 35-44 Female (Patient) Published: August 17

When I get cold my tongue starts to tingle, I get a slight burning sensation and it loses its color to almost pale blue/white. I wonder if this is Raynaud’s phenomenon.

Comment from: johnnyb81, 35-44 Male (Patient) Published: March 29

I am a 37 year old male and haven’t been diagnosed with Raynaud's phenomenon but show a lot of these symptoms and have for as long as I can remember. I also get numbness in my fingers that lasts for many hours, as well as in my feet almost daily.

Comment from: S K, 45-54 Male (Patient) Published: June 17

I had terminal gangrene of my left index finger, diagnosed as Raynaud's gangrene. I was advised to have the finger amputated. Another advice was to be treated with intravenous chelation using EDTA (ethylenediaminetetraacetic acid). The gangrene resolved after 30 treatments and the index finger was saved from amputation. Was this just a coincidence, a miracle, or real result from a novel medical treatment! Seeing is believing.

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.

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.

Comment from: termag, 45-54 Male (Caregiver) Published: April 11

My wife has been treated for Raynaud’s. Her problems are only on her fingers from mid knuckle to finger tips, which is where she routinely soaks her fingers in finger nail polish remover. I mentioned my concern over her doing this because the stuff is not gentle to the skin. I read the back of the jar of this stuff and it doesn"t seem like a good thing to tender skin.

Comment from: sissy, 45-54 Female (Patient) Published: February 20

I am 54 years old. When I was first told I had Raynaud"s phenomenon close to 7 years ago, my hands would lose blood flow only in the winter months. Now it is anytime. Sometimes my hands are numb for hours at a time.

Comment from: peggy64, 45-54 Female (Patient) Published: January 23

I have been diagnosed with Raynaud’s phenomenon 2 years ago and it affected my fingers and toes but just recently my tongue has turned white and I have tingly numb feeling just like the fingers.

Comment from: petpater, 65-74 Female (Caregiver) Published: December 27

I have been aware of having Reynaud’s since I was fourteen, but did not know what is was until I was much older (I am 68 now) and due to poor life style choices; smoking and drinking, I have PAD (peripheral artery disease) as well as CAD (coronary artery disease). I am fortunate that I haven't lost bits of myself, i.e. toes, and I wear gloves and fleece slippers everywhere. I have experienced very many episodes triggered by emotional distress; prevention is my method of dealing with the problem. I also have interstitial cystitis which may be a related autoimmune issue, though I have seen no confirmation of that.

Published: July 25

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: Tom, 65-74 Male (Patient) Published: June 26

At times the end of my fingers feel cold and turn white, I wonder if it is Raynaud's phenomenon.

Comment from: Pj, 13-18 Male (Caregiver) Published: June 11

I am not sure if my grandson has Raynaud's phenomenon but his legs are a light bluish color with red and white blotches running down his leg. I wonder if it could be this or some type of circulation problem in his legs.

Comment from: Jenny, 55-64 (Patient) Published: May 08

I have little red blood vessels in my palms, above my fingers and on my toes. I wonder if it is a symptom of Raynaud's phenomenon.

Comment from: Mary, 65-74 Female (Patient) Published: March 29

I wonder if Raynaud’s phenomenon can affect the esophagus.

Comment from: sioux woman, 75 or over Female (Patient) Published: January 27

I developed Raynaud’s phenomenon several years ago. Tiazac is a miracle medicine for it, also for left bundle branch block heart disease.

Comment from: Jay, 45-54 Female (Patient) Published: February 28

I"ve been told I have Raynaud’s and I relate to everything I read about it, but only one toe is affected every winter.

Comment from: Rena, 25-34 Female (Patient) Published: August 16

I am 25 and i was diagnose with Raynaud's when I was 23, I've went to countless doctors who had no idea what was going on with me and all thought it was severe allergy, may be because i live in Jamaica.I work in ac everyday and my skin gets swollen and red with patches, fingers and toe are always swollen and I itch all the time, I never go without shoes. Recently my doctor introduced me to Prednisone and Calcort but the side effect is i pack on the weight.

Comment from: Buerger's, 45-54 Female (Caregiver) Published: August 16

Symptoms began as pain in wrist at work. Thought it was strain from operating machine at work. Pain progressed to both hands with extreme swelling of fingers. Doctors could not diagnose me but gave prednisone. Ended up in emergency with blood clots in legs and lungs. While in hospital both hands had black fingertips that turned into ulcers. Feet also became black and were very swollen. After weeks in hospital diagnoses of Buerger disease was given. Lungs became affected somehow and was diagnosed with BOOP. Was in hospital for a month. Hands and feet still have Raynaud's phenomenon more so on right hand with ulcers but extreme burning pain to touch anything and to use water. Hands are ice cold use gloves all time. Treatment seems to be blood thinners for bloid clots and Gout medication for inflammation and then heavy narcotics such as morphine and oxycotin for pain control. My doctor doesn't seem to have a handle on this and appears to be focusing on narcotics for pain control. Need to find better treatment to get this under control and allow me to function other than sleep and stay warm.

Published: July 23

I am a 39 y/o male and was told 4 years ago I have Raynaud’s. In winter my toes turn white and blister like ingrown toenails. When the blood starts to flow through the toes again, my toes feel like they are on fire and very painful until they are normal again. I wear 2 or 3 pairs of socks and wooly shoes at home. If anyone has this and has to work outside like me, I brought some waterproof socks called sealskins and put them over 2 pairs of woolly socks and no matter how hard it rains my feet stay dry and warm. I also take medication over winter which helps a bit but wearing lots of clothing to stop the cold hitting the area is the answer and once I knew what I had, it was easier for me to protect myself and limit the pain.

Published: July 16

I am a 37 year old female and was diagnosed with Raynaud's syndrome about 4 years ago. In cold weather, my toes and fingers turn completely white and are extremely painful. It feels like pins and needles and severe aching. I can't even walk until the blood returns to my toes. No one understands how intense the pain actually is. Lately I have been having attacks in the air conditioner. I have also been diagnosed with a connective tissue autoimmune disease, which Raynaud's can be a symptom of.

Published: July 11

I found out in the last couple of years that Raynaud's phenomenon has affected my hands and fingers. I play golf, and on mornings when it’s under 50 degrees, the blood circulation in my fingers almost stops completely. I will go four or five holes before the blood flow starts again, which is followed by a stinging sensation in the fingers lasting 15 to 20 minutes.

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.

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.

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.

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.

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.

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.

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.

Published: June 24

I’m a 20 yr old living in Australia, and just recently found out I have Raynaud’s disease. It’s been happening for 6 years now but only recently saw a doctor about it. I get it in my legs so badly I can’t walk or use my legs because there is no blood in them and they go blue. It worsens with cold and tiles and air conditioning. It affects my work because I work in air conditioning running around all day.

Published: June 24

I was diagnosed with Raynaud's Phenomenon when I was about 18 years old(2000). My first attack was only in my hands, which turned such a dark blue that it was almost black. Since that day I've had moderate attacks with cool weather or stressful situations. Unfortunately I've been experiencing much more severe symptoms with my Raynaud's, I'm not sure whether they are related or not. Symptoms during attacks have included: -color change of limbs in cool or hot weather, or under stress -changing pasty white in my face and chest -tingling, cool sensation of lips and digits -warm to burning sensation of ears -distortion to loss of hearing -dizziness (Vertigo) -feeling of sea sickness -cold, very cold

Published: June 20

My lips, nose and most of my face is so cold. I live in Florida, am 51 years old, so it’s actually nice when I go outside into 80 degree heat with 80% humidity. The air conditioning makes it worse. Also my hands, sometimes my feet are affected. I am told nothing can be done about this.

Published: June 18

I’m a hairdresser, and the constant vibrating of my hair dryer, causes my wrists to tighten and get a tingling sensation in my fingers. Then I get pain in my thumbs and my hands go white, cold and dead looking. My doctor has told me I have Raynaud’s phenomenon. My other symptom is that my bicep goes into a spasm and feels like a cramp.

Published: June 18

I have had Raynaud’s for a number of years. Each year my illness gets worse, and I have found it hard to cope. The doctor says it’s something that I have to deal with, which is very hard. I get frost bite symptoms, and I can’t walk as my bones feel crushed together. There is no help with things like heating costs etc., if you’re on a low income. People just don’t seem to understand. At times, I am housebound by this, even with a car I am not able to go out when I want.

Published: June 10

I've recently been diagnosed with Raynaud's and the tip of my finger died. The Dr.'s have no clue so far and my finger is green and scary looking. I have never seen a documented case as bad as mine. So if you get symptoms o Raynaud’s seek medical attention A.S.A.P.

Published: June 09

I have suffered with Raynaud’s phenomenon my whole life and it’s on my mind every day cause the slightest change in temperature or working with water brings it on. I’m a 20 yr old male and my hands look like a 90 yr old man which is bad for my self esteem. I have just started learning about the disease and by the sound of things there is no cure.

Published: June 09

I’m cold all the time! Winter is the hardest because we live far north and it gets below 0 a lot. I turn blue/purple in the winter and I also have rosacea, which makes me turn bright red in heat and when I exercise.

Published: June 30

I like to walk my dog very early each morning (before 6 a.m. if possible). Unfortunately, I can no longer do this in wintertime. In fact, walking at any hour during the winter anymore can be an exercise in agony. This is due to my Reynaud's Phenomenon where the cold causes the blood vessels in my finger tips and the tips of my toes to clamp shut, causing me intense pain. When that happens, I must get back home ASAP as I just can't handle the pain.

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