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elch 
8:50pm, July 10, 2009
I have a rare disease called Dercum's, it has been a life long journey as I suffered through the years in pain at time severe pain. I have been blessed with doctors who never said your a hypochondiac. even if they might have thought it. It opened the door for others to try and figure out my pain. In the end it was I who was my best advocate. I started researching my own pain. The one thing I wished I did is kept a journal of my symptoms and really tried to descride my symptoms when I was having a flair. This is what lead me to Dercum's. I had suffered as achild with sever thigh and knee pain I wouldn't have it all the time but when I did it scared me it hurt so bad. My mother tried to tell me it was growing pains but I had my doudts. I grow up with four sisters who never sobbed like I did in pain so why weren't they suffering like me if they had growing pains. I knew my mother was definetly wrong when Ineer out grew it. As a child I suffered and would put a pillow between my legs to help the pain. I was tested for rheumatiod conditions as I got odler but tests came back negative. The flairs were so bad I would get scared and go to ER but I looked like a healthy young person. I would say I was injured just to try to get them to do test to see what was wrong. I dveloped stomach and esophagus problems from anti-inflammatories. I was never given any prilosec when I was on it. after surgery in 2001 one did the disease quickly progressive to being in pain everyday. surgery also caused infection which are triggers for this disease. But now I have treatments that work and help. My suffering is diminished i belong to painaid support group which has supported me made me laugh through the pain. having the diagnosis allows me to concentrate on treatment for my disease. this is some of my travel through a painful journey of this rare disease. only 400 cases are known in the US adding mine 401. Elch
Comments
Iam still advocating this time for treatment of Dercums, I have found a treatment regimen that works for me, so why not share it with others who suffer from chronic pain. It may help others the may not need exactly the same treatment but it is a start because it is up to us to find treatment because we suffer with a slow progressive disease that will not go away. we need to educate our doctors I made a brochure that is helpful according to the doctors or fax them info from website. do this before any appointment so they have time to read it before you see the doctors. also remember to tell your physicians that physical therapy makes the disease worse alot don't know this and send you a you end up in extreme pain. I know because it happened to me before I found out about the disease. become familiar with it the more you know the better you understand how the disease works. I found the most important thing for my disease is maintaining the pain. that is way I have too take my medication several times a day to keep my pain controlled. please do not hold back on treatments that help you because you can help others. this is an update to my journal
elch