Impatiently playing the waiting game

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Lady Byron
New Member


Date Joined Sep 2014
Total Posts : 3
   Posted 9/3/2014 10:58 AM (GMT -6)   
Hi everyone!
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 rolleyes ). 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 location.
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.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/3/2014 11:13 PM (GMT -6)   
Lupus has many faces. Not everyone has the same symptoms all of the time.
You're welcomed to visit here and ask questions.
Have you read the first thread here?
Have you been to lupus.org?

Is your doctor relying only on blood tests? There is a list of 11 indicators for lupus you need to meet only four of the eleven.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lady Byron
New Member


Date Joined Sep 2014
Total Posts : 3
   Posted 9/4/2014 12:19 AM (GMT -6)   
Hi Joy,
Yes, I've gone through the threads at the top, been to many different sites. Read a lot of personal stories and research documents. It's just a struggle tryi to figure out whats wrong and to get a doctor to actually pay attention, as I'm sure many of you are well aware.
I've read the lupus standard criteria as well as the St Thomas alternative criteria. Based off of both sets, I would "qualify" as having lupus. But as you said, lupus comes in many faces.
I'm not sure what this rheumatologist is going off of. I've been to many different doctors, primary and specialists. This monday will be my second appointment with this rheumatologist.. he's shared my test results but wont actually talk with me unless I'm in his office. I feel like I have to catch his interest in regards to my case... like he sees so many patients as the director of an arthritic/rheumatologist clinic at OHSU, I have to be worth his time and attention. Even if it turns out to not be lupus, I at least want an answer so I know there's a treatment waiting for me. I feel like my body is slowly giving out. Like it's become the living embodiment of Murphy's law.

tenXmom
Regular Member


Date Joined Jan 2013
Total Posts : 62
   Posted 9/4/2014 1:59 AM (GMT -6)   
Like it's become the living embodiment of Murphy's law.

ROFL - that has to be one of the best descriptions I have read!!!

Thank you

I'm sorry you've had to research and join in - I hope the DR sees an interesting spark in you
Laura aka tenXmom
AI Hep - AI Pancreatis - Lupus - RA & Osteoarthritis - Reynaud's - Fibro - AIED - TMJ - Sjogren's - and whatever is going on with the gallbladder...

Lady Byron
New Member


Date Joined Sep 2014
Total Posts : 3
   Posted 9/4/2014 10:26 AM (GMT -6)   
Laura - Oh, I'm interesting, no doubt about that! smilewinkgrin

It is what it is, this is the card hand I've been given and I won't fold. I guess I just want a cheat sheet!

I keep reading everyone's stories and posts and I see bits and pieces of myself in so many of them. I just want to figure out what is going on so I can start dealing with it and get on with my life. I'm newly married, we just celebrated our first year. I feel horrible because our first year together, I had very few flare ups.. and then it seems right after we got married, I'm flaring constantly. I keep teasing my husband that he got a "lemon" of a wife. You know, those sexy little sport cars that someone is selling and as soon as you buy it, it starts breaking down? Thankfully, he just shakes his head at me and we handle life as it comes, day to day.
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