Patient Comments: Raynaud's Phenomenon - Describe Your Experience

Please describe your experience with Raynaud's phenomenon.

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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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.

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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.

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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.

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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.

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