09-14-2011, 10:40 PM
I have not been told I have lupus but it has been suggested by several Dr. I've seen to be tested for it. I began to feel bad about four years ago and it has gotten progressivly worse since then. It first started that i had high white blood cell count which i think is out of context for lupus but that is how it began. Ive always had migraines but they are every day now.Im so tired i feel like i cant move. My entire body hurts. My joints are swollen and achy. My feet, ankles, face all seem puffy. I always have protein in my urine. I itch all over all the time and have had muliple strange rash almost like hives and other which look like acne but arent no butterfly rash though. My feet stay hot and burn. My body feels sore to the touch. I had episcleritis in my right eye for like two -three weeks then it went away and i got it in my left eye and had it for some three four months. Thats when the eye dr. suggested i get tested for rhumatoid arth and or lupus. so i go to a aprn at a local clinic she doesnt even know what episcleritis is or what to order to test for lupus i had read little on it and only knew of rh factor and ana which she said were both neg. I always have low grade temp. I have kidney stones always and went yesturday to have one removed because my kidney was part way obstructed and they tell me i have intersistal cystitis/painful bladder and this is autoimmune. I do have anxiety/depression which have gotten worse. I cant sleep i never feel well. Just wondering if this even sounds like lupus or am i just crazy. Im only 31 years old i should not feel this way. any input would be greatly appreciated. Thanks for reading i know it is really long. I am always having flank pain and have blood in my urine alot. I used to would lay in the tanning bed and it didnt really affect me over the last 7-8 yr i cant because every time i get a rash and even from the sun. Is it possible to have a neg rh factor and neg ana and still have lupus. thanks again Jessica
Hey Jessica! One of the most frustrating things about Lupus is that yes, you can have a negative test for ana, and inflammation in the body - even when a Lupus patient is in the midst of a large flare. As for your "Im only 31 years old i should not feel this way" You're right - you definitely have something going wrong in your body, and with what you've described, it does sound like it could be an autoimmune illness, possibly Lupus. (of course, I'm no doctor) 31 isn't young to be having autoimmune, though, as many on here are much younger, or parents of much younger with it.
What I would suggest is that you go see a rheumatologist, if you haven't already. A rheumatologist deals with autoimmune - specifically illnesses with joint issues and pain. In my opinion, that would be your best bet towards getting diagnosed and on the path to feeling better. Even if you aren't diagnosed with Lupus or something specific, they can still try to prescribe medication and evaluate things so you know a little bit more about where you stand and what might help you.
It's a hard journey, I know, but you can do it. After all, you've gotten this far :)
just remember that you have to be your own advocate.. if a doctor makes you feel unworthy, or perhaps doesn't give you what you need, then they're not right for you - and you should move on and find one who is. Keep pushing to get diagnosed, to get the medical care and treatment that you really need.
But for now, be sure to rest when your body needs it. Let yourself be still and give yourself breaks - you need them. If you try to push yourself too hard, it may hurt you in the end, regardless of whether or not you have Lupus. :)
Anyways, welcome to the forum, and I really hope that you get some answers and relief soon.
09-15-2011, 07:28 AM
Thanks so much for taking the time to read my long post and your advice . I dec to wait until i go back to the urologist next thur. because he is one of the dr. that suggested i be tested for it. Maybe after he dx me with intersistal cystitis and the long list of complaints i have maybe he will do labs and get me refered to a rhemu. I have over the last couple of days of laying on the couch i have found one in the area that is supposed to be good. Again thanks so much for taking the time to talk to me it helps knowing someone understands, even if its not lupus
09-15-2011, 12:07 PM
Believe me, we understand.
Most of us have waited for years to get a final diagnosis. You know, that there is something wrong with your body, so don't give up, push until you get an answer. Going to a rheumatologist is the first step.