They call this a finger print disease, because everyone is different. There are different degrees of illness, different reactions to symptoms and meds etc. Some have organ issues, some don't, they just have achiness and tiredness.
Many people don't know that the skin is an organ as well and is often attacked by lupus. Its an easy target since it is exposed to lot of chemicals, sun, etc.
I had to stop wearing perfume years ago, it would cause inflammation and mad itching. This was long before i was diagnosis.
Since diagnosed, I have been warned by rheumatologists and dermatologist to beware of sun. I have also found that i don't do well in flourescent lighting.
Every doctor has their own beliefs.
I don't know what your GP will tell you when you get a rash from being in the sun unprotected or when your symptoms get worse. Many people here with lupus have complained of just that.
Some doctors, even rheumatologist don't know how to treat lupus and their patients. I should say more than some. My first rheumy didn't want me as a lupus patient, he was good at diagnosing and knew to put me on prednisone,, but didn't want to deal with much more than that. He was the one that said, there are crazy people in online support groups and i shouldn't go there. That was two years ago. He gave me my file and told me to look for someone else. He mainly treated the elderly. Now I am with Arthritis and Pain Management. They are a group of doctors that deal with lupus patients. And my dermatologist says sunblock, sunblock,oh yeah, and did i mention,, sunblock.
I believe a lot of doctors tell you not to worry about symptoms and keep playing football, so that you don't turn into a hypocondriac. Which is easy to do since something always comes up mediacally with us lupies. I guess they believe if you don't look for it, it is less likely to happen.
Best advise is to keep living your life as you normally would,you will know your limitations eventually. Then you'll have to find a way to get past it.
Personally, my lupus hit like a rock. Back pain, flu like symptoms,, eventually kept me from walking. After seeing a number of doctors, i found my way to that rheumy who started me on treatment. It took me months before i could get back on my feet enough to be able to walk through a parking lot without losing my breath and suffering excrutiating pain all over my body.
I had persistance. I knew something was wrong even though the doctors said nothing showed through their tests. Now with the help of some good doctors rheumy, GP, Dermy, Opthalmy, I am back to walking again.
For me,, getting used to this disease was like running into a brick wall all the time. No way around it. I had to except it, embrace it, in order for me to get through to the other side of that wall.
No matter what the doctors say,, listen to what your body is telling you. Don't settle for take 2 asprin and call me in the morning.
Well i think i have said enough..
Good Luck
Wearing long sleeves makes you heat up like when in a Sauna.
