Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hello. I just joined this group and have been sick for years with something that has all the signs of Lupus, but never really has been proven. I had one doctor years ago back in the 1980's who ran test and claimed then taht I had Lupus,but I didn't even know what it was and had never heard of it at that time. I have these stranges rashes along with all the other debilitating sympytoms tiredness, muscle and joint pain and other organs involved including inflamed colon that constantly gives me trouble and I have to watch what I eat,and any meds ,or just about anything to make sure things don't get worse. The rashes are on my feet and lower legs near my ankes, some of them are like little round circles and they itch. They come and go in cycles and they look really bad on my legs and I'm so embaressed since I always had nice legs before. I also get a rash on my face that is really weird, not the perfect Malar Rash that is reffered to with people that have Lupus,but it is there all the same but not totally over the whole face, just areas mostly on my eyelids and right cheek and between my eyebrows. It flares up really bad I have noticed when I eat,or any medications that don't agree it flares up. I constantly have to be watching or it will flare up really bad it I get stressed out,or consume something I have noticed that doesn't agree with my system. This has been going on now and getting worse for the past 20 years. I have been to one doctor after another who claim they don't think it is Lupus and ones who think it is and I feel like I am about to go crazy sometimes. I would like to know if anyone gets that kind of rash I described on my legs. It is so strange.
You'll find thru journaling abt any & all issues that you'll get remarkable advice alot of times.
Once you have lupus your body handles pretty much everything differently fr what it would have before. I've had to learn to definitely make some diet adjustments which helps to make a difference in symptoms. I know too in todays world balancing a lifestyle can be hard but as best a balance as you can achieve can also make a huge difference.
It almost sounds like your rash might be a vasculitis type rash. When they were 1st diagnosing me I had it to the point where my whole face was covered & inflamed.
MOST definitely get in contact with a good rheumatologist. I'd of been so lost without mine.
Educating yourself too will help empower you to live your life to it's fullest.
Best to you my dear. We're all here for you.
I'm on Medicaid and it seems like that they really don't want to to their best when they find out that I'm on that,or just that allot of Labs don't accept Medicaid. I went to one Ruematologist here and he said I had fybromyalgia, but didn't say anything about the rash,so I was sent to the OU Dermatology here and they didn't know what to do either and refused to take a skin biopsy, and it is always students and for some reason they don't want to do anything outside of prescribing a skin cream for the rash. I'm so sick of it all.
Good luck
Sylvie