I'm new here but have played wallflower to many posts in the last few months. I am hoping to get some feedback from everyone.. maybe some advice or food for thought. I will try to keep this organized.....
I am a 27 year old woman who has been dealing with non inflammatory joint pain since I was 19. Over the years, I've developed many other symptoms (who hasn't
). It all started in my hands, doctors thought it was carpal tunnel - tested negative. Eventually I was told I had tendinitis. The pain is now in my low back, hips, knees and feet. I was in a few fender benders in the last five years so I never really considered my back pain a part of the "problem" - Especially since a recent MRI came back with a protruding disc in L5-S1 area. I say it's non inflammatory because despite the obvious swelling (sometimes my wedding ring can fall off, other times it won't budge at all, when the swelling is really bad, my veins buldge in my hands and feet), I have no actual inflammation, per my blood tests
I have very sensitive skin.. if I'm out in the sun for more than a half hour, I start feeling very lethargic and almost "flu" like. I get flushed very easily. No rashes. I also can't stand bright light. My eyes are way too sensitive for that.
When I'm stressed or feeling sick, I start losing more hair than is normal. When I was younger, my hair was ridiculously thick.. now, while it's still thick, it's no where near what it used to be.
I was diagnosed with IBS last fall. Man, has that been fun. I am also lactose intolerant. I'm really not sure if that has anything to do with "the big mystery problem" but. .it's there.
I get migraines with auras and headaches.
I've been anemic for a long time but as long as I stay on Depo Provera (and therefore, don't have a period), my iron levels even out.
I have "female problems". When I'm not on depo, my periods are long, heavy, painful and occur every two weeks. I have a cyst on my left ovary that has been there for over a year. I've had a couple doctors mention endometriosis but I'm hesitant to get the test done - which consists of cutting me
open and taking a peek for confirmation.
I get sick very easily. For example, last November I caught a cold.. then another... and a few weeks later, another... by the time February rolled around, I had developed bronchitis. April was an ear infection.. May was a sinus infection - which caused the ear infection, I just didn't realize I had a sinus infection first.. June I was alright except for a cough. Since then, I've still had a cough and some slight congestion but despite the five different antibiotics I've been on this year, it refuses to leave me alone. I had a chest xray and been allergy tested. Everything came back normal.
Since last November, I've had a low grade fever that refuses to go away. When I get sick, I always get fevers and they're typically rather high for an adult but this is the first time I've had a fever that refuses to budge from it's 99.8
I also now have pain in my chest/sternum, off and on. I don't know if it's from the coughing or what..
I'm always tired.. fatigued. It's hard to get up but I have to. Even with a full night's sleep, I wake up feeling like I need five more hours.
Recently, the newest symptom is a "strawberry tongue". I had a bad reaction to a sulfa antibiotic and despite stopping it over two months ago, I still have tiny red spots all over my tongue.. this goes along with the recurring small sores I get on the sides of my tongue (the kind you might get when you eat too much sugar or some sour candy, except I'm not eating any). The red spots flare up often now.. at least once a week for a few days. Makes eating difficult. Constantly feeling like my tongue is burned.
I've also had a stomach infection a few years ago and based off the symptoms, I believe I've had at least two other stomach infections - they just went undiagnosed. Last year, my GI doctor ran multiple tests and a colonoscopy and everything was normal. Seems like that's the story of my life.. "your tests are normal"
I am always cold, my hands and feet are always freezing and get a very weird spotty pink and white color when I'm really cold - yet I get night sweats often.
I'm severely deficient in vit D, low in Vit B. My ANA was positive yet the titer was 1:40 and speckled. While I know this is considered borderline positive/negative, these tests were run by the Oregon Health and Science University... If they say it's positive, I'm going to believe them. Yet the anti DNA was negative. All my tests were in the normal range, mostly low normal but still...
My rheumy has mentioned Fibro, RA and Lupus.. But recently, the fibro was ruled out (no widespread pain, no tender points.. all my pain is very specifically located). I don't believe it can be RA because my blood tests have NEVER showed inflammation. I have this feeling it's lupus.. but my rheumy isn't so sure. I know there are so many AI diseases out there... but with my rheumy being so wishy washy and my problems getting worse, I'm starting.. no, not starting, getting more anxious. I have an appointment with him on Monday.. And I'm worried he's going to just shrug his shoulders and say, "well, it's hard to tell.."
Anyways, now that I've rambled, as I'm sure many other first time posters have... I don't know where to go from here. I don't know anyone who has lupus so I can't "compare notes". Maybe it's not lupus .. but.. I just don't know what to do. I want an answer........ Don't we all.