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Raynaud's disease

Posted by @alan1 in Heart & Blood Health, Oct 16, 2011

I have had scleroderma for several years and also suffer from Raynaud's disease. Recently the latter has become a real problem and my fingers have become exceptionally sensitive. One (middle LH finger) has developed a blackened area on the tip which feels superficially dead, and behind this it is excessively painful, sometimes affecting the whole finger and even the others. I have read that Raynaud's can be treated with injections or surgery to block the nerves causing the blood vessels to contract. I would very much like to make contact with others who have suffered the same problem and have maybe found a way of curing it.


Posted by @cplace, Oct 20, 2011

Hey Alan. I wish I could help you, but right now I just do not know what to say. I was just dagnosed with it myself. It has been going on for years during the winter, and usually affects a finger or two at a time. Now the finger tips and the next joint as well have began to discolor. Have you been to the Mayo Clinic? If so what was the rusult? I truly HOPE your situation gets much better if not COMPLETELY HEALED...


Posted by @chood, Dec 12, 2011

I am struggling with Renaulds as well. I can't be on my feetfor more than a short while they are so painful. I've just started to try to learn abou this disease, so I don't have much knowledge either,but I just read there are drugs to open the blood vessels to increase circulation. It seems as though something to thin the blood would be necessary to decrease chances of clots.
Best Wishes. Praying for relief.


Posted by @alan1, Dec 21, 2011

Thanks Chood and Cplace. Sorry to hear about your situation. I live in South Africa so many of the treatments for Raynauds and finger ulcers especially are not available here. At least we are now in summer and temperatures are higher, so my finger ulcers are on the decline. I'm taking various meds to try and control things, such as nicotinic acid, cardio aspirin, also putting bactroban ointment on the ulcers. Am hoping to try Manuka honey which is supposed to work well. Otherwise I concentrate on keeping warm and wearing gloves. I am not looking forward to winter though! Best of luck to you in trying to deal with this horrible affliction!


Posted by @anon71813578, Feb 5, 2012

My daughter is 23 n has been diagnosed with Raynauds phenomenon We have been all over Jackson ,ms. N oschners in new Orleans They are saying the Raynauds is a secondary disease. We have been taking her to Drs since sept 26. At first our primary Dr wrote on her chart that it was psychological but by the 3rd visit n my daughters research my dtr told her what was wrong. She got off the stick n sent us to oschners in new Orleans. Still no diagnosis. We went to see hematologist/oncologist fri to get results from 13 vials of blood that had been drawn n sent to mayo. More blood drawn y'day. I see my dtr getting worse before my eyes. It takes all my energy not to cry in front of her. She is so strong but this am she had a melt down. She has told 1 of my friends she is trying to be strong for me. If I was a Dr. I could not sleep knowing there is a 23 yr old active workaholic just going down.


Posted by @swoozie2, Jun 19, 2012

I was just diagnosed with Raynauds Disease in February of this year. I had experienced excessive swelling my my feet and ankles when flying overseas (3 different times) and anytime I travel sitting for a long time. Then last fall I started getting ulcers on my calves which were pretty severe. I've always been a sun worshiper so when returning from Florida Oct '12, everything started getting really bad.....numerous ulcers on my legs. I started with my GP and she immediately said she thought it was Raynauds which I'd never heard of. From there I went to a vascular doctor who ran ultrasounds of my legs, feet and hips which showed no blockages. The vascular doctor ran blood tests for RA and Lupus which came back negative, thankfully. Vascular dr put me on Diltiazem (a blood pressure drug and channel blocker which helps open up the vessels.) Most of the ulcers are completely gone on my calves. I have a very stressful job....President of three companies and it's impossible to alleviate all my stress. Now I have excessive swelling of my feet Monday through Friday when I'm at work. GP put me on 2 fluid pills a day and now has bumped that up to 3 a day along with Xanax. I'm sitting at my desk with my feet propped up on an ottoman so I can work. Over the weekend, my feet were normal size with no swelling. That tells me the swelling is coming from the Raynauds which is being triggered by stress. I don't know if anyone else is experiencing this but if I have to be on my feet for any length of time when I go home from work, my feet and legs simply kill me. I guess the answer is quit my job but my husband and I own these businesses and that's simply not an answer. I've read somewhere about biofeedback....not sure what that is or where you get it. But right now I'm living on fluid pills and Xanax to get through the work week. If anyone has experience with this complication of Raynauds, I'd love to hear how you're handling it. I'm also glad to find a place where someone understands. Right now I feel like a freak when anyone sees my feet at the end of the workday and they just do not understand even when I try to explain it to them. And my husband sure doesn't understand it.

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