Patient Comments: Raynaud's Phenomenon - Describe Your Experience

Please describe your experience with Raynaud's phenomenon.

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.

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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.

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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.

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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.

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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.

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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.

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Comment from: Emma Elise, 65-74 Female Published: July 15

I have experienced Reynaud's Phenomenon without apparent more serious connections for the last four or five years. It only affects my hands, my left hand most of all, which I don't use as much. I have found the secret to be keeping my core warm. As well, I use fingerless mittens, a warm knitted woollen scarf and leg warmers as my 'uniform' in the chill of the mornings and evenings Every Day, and sometimes all through the day. I never go bare footed and pay atttention to the first feelings of 'cold' invading my body, which is where the trigger lies. By the time the cold gets to the hands, it is out of control. Much better to stop it while it is in the core. I have invested in more warm jackets so I have something snug to wear in all conditions. I read somewhere that doing aeroplanes with both arms would help, and sometimes I use this; it definitely helps me. Hope this helps someone else out there!

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