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LadyBugDi: Acrocyanosis (now Raynaud's)

I was in bad shape, but I got to the point where it was up to me to push myself back to a more normal life.

I am not sure what happened to me. I did not ask any questions nor was I looking for any answers. I was tired of going to the doctor and being told it was from stress. When I finally did go for help, I had let things go too far and all I wanted was to get back to normal. I did everything I was told and when I figured the doctor had given up on me because he could not explain things, I took things into my own hands and stopped the medication because I felt was hurting me more than it was helping me. I was in bad shape, but I got to the point where it was up to me to push myself back to a more normal life.

Five of my finger tips turned black and I lost control of my hands. My legs and feet swelled like balloons. My arms and shoulders just hurt. I could lift my arms above my head, but someone else had to bring them back down for me. I lost strength in my hands and arms. I walked like I was ninety years old. There was not a part of my body that did not hurt.

The specialist that I was sent to was amazed with my fingers and I think he had never seen this before. He got a bunch of doctors together so they could all check out my hands and see if they had any ideas or any experience with what was going on with me. One other doctor had been treating a patient who had the same thing for the last six months but still they did not know what they were dealing with. This specialist dealt only with my fingers and some of the medication he put me on caused my legs to swell even more, something I complained about, but he said he was more worried I would lose the fingers so they would take care of the fingers first.

He diagnosed me with acrocyanosis, not Raynaud's, because of the length of time the fingers stayed black.They were black for six to seven weeks. I had every test he could think of testing me for. I was tested for lupus, rheumatoid arthritis and fibromyalgia. I had a lot of the symptoms of fibromyalgia, but he could not positively diagnose it as that. So I was never actually told much, but as my hands got better I was sent to another doctor for the legs and feet. She did all her tests and could not come up with any diagnoses either, so I was sent back to the family doctor.

I fought for two years with the swollen legs and feet until my doctor had a student in with him who thought of trying something new. I was on fluid pills but there was another medication that is taken half an hour before the fluid pill and it is the first thing that actually helped.

My hands have never turned the black color again. Now they turn ghostly white, feel numb and burn. Then they change to the dark red color before they come back to their normal color. To me this is Raynaud's, but until I have to wait to see the specialist. I have the same color change with my feet.

My younger sister has been having trouble with one fingertip that is staying black so I am going to the specialist with her. This is the same specialist that I am waiting to see. This is my chance to ask some questions and get some long awaited answers. It is frustrating because these are things I should have asked before, but I was not in the right frame of mind to do so.

I am normally a very shy, quiet person and this is now a chance to learn and find out thing, so I am asking questions. I asked what the diagnosis was and when I was told it was Raynaud's, I made a point of describing the differences between acrocyanosis and Raynaud's to get my point across. I might have stepped over the line, but I went through the same thing so I did know the difference. When the doctor came back in, he made a point of not saying what it is because the intern had told him what I said. He just said the tests have not come all back yet so he wanted to wait till they did. Her finger will be back to normal when we go back on Tuesday, so I want to see if they will continue doing tests until they find out what this is from. She has had this happen two other times, but this is the first time she was sent to the specialist because this is the longest her finger has been black.

Right now my body is sore all over again. When I first noticed a difference it was just my hands, arms and shoulders and I was put on a medication. Within three weeks my body was sore all over so I went back and was put on another medicine. I am getting some relief, but I still hurt all over. I am trying to get back in to see the doctor, but she is on vacation now so I will have to see another doctor. This feels the same as when I first had my problems and was never told what it was. Maybe they will go back over my reports and find something in there. It took me almost three years to get the acrocyanosis diagnosis as I was never told what they thought I had. Unless you ask, they certainly do not volunteer any information, that is for sure.

I will continue going with my sister to her appointments and hopefully soon I will be seen by this same specialist and get some answers to my own problems.

My problems do not even come close to what others are going through. I have been reading the stories and I can see how so many more are much worse off then I am. I certainly do hope and pray they are getting all the help they need. I have learned a lot from this site and will continue learning. My prayers are with you all.

To Contact the Author

New email address needed 09-26-06 SLE
Old Email Prefix: diana_lynn41
Story posted 04-13-04

Story Artist: Ione Bridgman
Story Editor: Judith Devlin
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ISN Artist: Ione Bridgman

Ione BridgmanISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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