Does any of this sound familiar?
I have been looking for answers since I got sick 19 years ago. I got really sick with Grave's disease back then. I was so week it was hard to walk. I had very swollen painful glands in my neck-just on fire. They have hurt every month or 2 since. Drs couldn't explain that. I had chronic flu like fatique ever since. After two years my endocrinologist said I am one on those that never gets over Grave's disease and would never feel any better. I had a blood test for Lupus but it was negative. I had cousins with Lupus, Scleroderma, Juvi Diabetes, and 2 others that also had Grave's. I have ANAs and had to start a business so I could keep a job. It was a battle against my body. I pushed and pushed myself until I lost most of my work a few months ago because of worstening Neuro. problems for several years. I didn't tell too many others how I felt because many people didn't believe you. Even some other Drs Thought it couldn't be that because it is so rare. I always thought I might have a mild version of another auto immune disease that involved swollen glands. Three years ago I got bad dry mouth along with the dry eyes I had had for many years. A DR thought I might have Sjogren syndrome. I found out just a few years ago that you could still have autoimm. problems without blood testing postitive. Went to Hawaii for the first time in 10 yrs and had a strange experience. Bought a hat and a lot of sunscreen. First day at the beach-we just stayed for a few hours. I love to swim in the ocean and snorkel.. Went out for 20-30 min to get a little color then dryed off and loaded up with sunscreen. The next day I had blisters over a lot of my back. I had been to Hawaii many times years ago and never got a sun blister! I also got a funny burn on my face even though I didn't have exposure there. It was in the middle of my face and cheeks with white on the sides. A man trying to sell skin lotions to people near his store wanted to sell me lotion for rosacea. I kept covered up the rest of the time. After incredible pain and strange thick peeling it is 3 weeks since I got burned and it seems not to be healing well-it still looks like I just got a sunburn The general Dr said maybe I got a really bad burn. I have a picture I took a year ago of a strange rash on my cheeks kind of triangular shaped with no sun exposure. But I don't have a lot of joint problems except about a year ago one day when one knee was really swollen and I could hardly walk on it. It has been sore off and on since. I had to wait for 4 months to see a Neurologist in a few weeks. I will ask him about this. I don't know when I can get into a rheumatologist to ask about Lupus. May be months if I can get in. It is nice to maybe have answers. It helps so much to read blogs and comments by those with Lupus. Thank you. I know I have to wait for a Drs advise but do these things sound familiar?