Hi, I am sorry to hear you have to go through this. When I was first diagnosed with fibromyalgia I was 25 and glad to have a diagnosis. I am 51 now and back then no one had heard of it or understood it. I was able to exercise and lead a relatively normal life until about 10 years ago. So much pain and exhaustion I couldn't do anything. After a few years finally diagnosed Rheumatoid Arthritis. I wasn't surprised, but glad it wasn't something worse. Kind of went through a denial phase and a freaking out phase, but Humira has made my life livable. Next was Sjogren's Syndrome and that one really through me for a loop. Again I was glad to have a diagnosis, but then I totally freaked out. My doctor didn't seem very concerned yet the long-term effects are very scary. Then I went through denial again. I always do a lot of research and try to be my own advocate because no one else understands; husband, kids and friends try, but they don't get it. The fatigue and guilt for not being able to do things get overwhelming. I pretty much tell my docs what I need and they oblige. Helpful, but uncomfortable because I feel like they should no more than me. Educate yourself, allow yourself to rest and grieve because it is a life changing dx for sure. Good luck and feel free to write me. Lately I have found these support groups to be more helpful than anything because ppl really understand.
WOW. just been reading through comments posted. I am new to internet, and forums, since reading i now know im not alone, had no idea lupus was this common. I was diagnsed about four years ago just before i got married but had a miriad of unexplaind symptoms for about five years prior to diagnosis. the first symptom i had was a deep red mark on my neck that took some explaining to my girlfriend at the time because it looked just like a love bite. Then an even larger one appeared on my waist about the size of a mans fist wich lasted for six months before dissapearing. at the time i was a builder and over a period of about four years i noticed that i was becoming increasingly more tired after work and during the working week, this feeling of fatigue and lethargy slowly crept up on me and began to rule my life, because i didnt have any energy left for family or social life. these symptoms were soon to be joined by others like aches and pains, joints and muscles and have got so much now that i had to give up work last year. it got to the stage that i could do a days work and would have to take three days off to recover as i was totally drained. even now a simple trip to the shops with my wife can see me wrecked for the rest of the day (completely worn out) thats the truth but i feel that people dont believe me and think im lying. I currently spend most of my time house bound because i now have a permanent red rash all around my neck and my forehead that is quite unsightly and im very consious of it. it never dissapears unless i use a protopic cream, but i only use it if i have to go somewhere special like a wedding or similar because it itches even more when i use it, so only use it when i really need to. the rash i have is also aggravated by ultra violet light so it doesnt necessarily have to be sunny, just normal day light bothers me. I can only describe it as like a slug or snail needs to get out of the sun when uncovered, its not nice and i cant stand being in it even with sun block on. I dont know how forums work or even if what i write is visible to anyone, so if anybody can let me now it would be much appreciated. Jeff, fellow lupus friend. ***@****
It seem very clear to me that you don't have lupus, or at least that's not all you have. You have porphyria!
Hi, Could you please give more information if you can? To jeffmoz50, hang in their and welcome.
For me, I found out over the phone, which was weird enough. My doctor was checking for thyroid problems but ran a bunch of tests for other things. I knew something was wrong when she started the conversation with "do you feel okay?" She told me I had blood work that indicated lupus (as well as thyroid disease) and that I should see a rheumatologist. I wasn't having any lupus symptoms so I just ignored it for the most part. For many years I couldn't get a clear diagnosis, just a confirmation of antibodies. How do I feel? Generally confused.