Patient Comments: Raynaud's Phenomenon - Describe Your Experience

Please describe your experience with Raynaud's phenomenon.

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

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

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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.

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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.

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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.

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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.

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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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Raynaud's Phenomenon - Treatments Question: What was your treatment for Raynaud's phenomenon?
Raynaud's Phenomenon -Symptoms Question: What symptoms have you experienced with your Raynaud's phenomenon?

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