I've been on the boards for a little while now due to Fibromyalgia and Chronic Fatigue Syndrome amongst other things like IC, IBS, Vulvodynia, Hypoglycemia, gastric ulcers and the list goes on. Back in march, because of all the surgeries, constant pain, etc. they also did all the tests for autoimmune type diseases and although a few were on the border they said I was ok. Well I finally (after 5 months) had the appointment with my rheumatologist and she wanted to run some tests again but specifically do the ANA IFA test instead of the regular one I had because everyone was pretty certain with the course my life has taken with disease and surgeries, etc. and family history (even though I'm only 26) that I had an autoimmune disease even when the first results came back ok.
So I find out yesterday, I was in the higher range of what she considers "the middle". It was positive, but she said she considers me having lupus in the early stages. She is starting me on the antimalarial meds and hoping we can cut the symptoms down and that will be all I need to be on for now - aside from the multitude of drugs I'm on for everything else. I've always had some kidney problems and my liver counts have been slightly elevated for a while...I'm just scared now.
When I got my diagnoses of IC, Fibro and CFIDS (amongst the others) it took a long time, but I accepted it because I Thought...well this sucks because I'm always in pain, but it's not going to kill me or shorten my lifespan or anything...just good days and bad. But now I'm scared, because of how this disease can affect your organs....it's not like the others. I haven't had the time to do as much research as I'd like, but I just wanted to introduce myself on this forum and any suggestions or tips or thoughts from those of you that deal with this or have dealt with it for a long time would be appreciated. My other conditions give me pain every day, it's just worse some days. Are there flares with this or is it all the time?
I really appreciate the responses because I haven't told a soul yet...I'd like to be a bit more informed before I do. Also, the drug she's putting me on is Plaquenil. She said I may have nausea for a while and it's not immediate - it takes some time. Does anyone have experience with this drug as well? i could list all the meds I'm on if it would be helpful but its long so I won't do that unless someone thinks it's neccessary.
Thanks again - I'm used to the shock of being diagnosed when i knew something was wrong, but I really thought it was over and was genuinely shocked when I got this call...it was the last thing I expected. Thanks in advance for any personal information from your own experiences...I think that will be really helpful along with reading more about it.