I think I have Lupus... 17/female..

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New Member

Date Joined Apr 2014
Total Posts : 2
   Posted 4/14/2014 5:05 AM (GMT -6)   
Alright. I'm 17 and these past few years have been tiring, stressful, and filled with Oh-so-many aches and pains. I moved to the sunny Desert out West when I was 13 (I've always been a New England child) and that's as far back as I remember the depression and anxiety beginning, 13. Though I do remember sickly lying in bed everyday as soon as I returned home from school, feeling like I could not move. I always insisted there was something wrong, but I was not believed, eventually It got to the point where I no longer believed myself.

I spent the next few years continuing to live in the West which I despised (to put it light) and considering the possibility of Lupus makes everything fit together...like a puzzle...

I moved back home and although I remained an always fatigued, stressed, tired and achy human being, I became distracted by my many other endeavors. It wasn't until this past fall, 2013, that things really took a turn for the worst. I went out to Arizona for a visit, and that when it started. The dizziness, the headaches, the terrible, painful, excruciating fatigue. All after being in the Bright, Beaming sun. The ringing in my ears never stopped. I spent every day hiding in a room on the floor because the bed hurt my body too much. For weeks I lie there in too much pain to move. I asked my friends to take me to the hospital but they insisted it was simply a cold or the flu. I knew better.

Weeks later, I forced myself to travel by plane to return home, although I was at my worst. The moment my mother laid eyes on me we rushed to the hospital... I was never diagnosed with lupus, I was never "diagnosed" with anything. It took weeks of going right back to the emergency room, only to see DIFFERENT doctors, explain the SAME symptoms, run the SAME basic TESTS... only to reach no conclusions. We tested everything under the sun, twice. three times even. No one doctor ever dedicated themselves to the issue long enough to figure anything out. So I spent nights in the hospital given pain medicine that didn't work, being poked with IV needles constantly only to not make any notable progress... and to top it off I had a new doctor every morning I awoke...

about the only thing those visits did was confirm a constant high white blood cell count in my blood, implying infection. We had other tests but despite our many calls, our efforts went unrewarded with no firm answers on the other tests. (rheumatoid arthritis, meningitis, etc.) They made it sound as if It was all no big deal.. it was just some ordinary sickness (though no tests proved that)

I do have a personal healthcare doctor on medicaid, If you wonder why I have not taken that route, I in fact have. By the time I could even think of getting to my doctors office, I had already spent weeks lying on the living room floor shielded from the suns harmful rays, so although I was still fatigued (as usual) I had at that point, slightly improved.. which didn't exactly help to show my doctor my pain.. the word lupus had been mentioned once or twice but never given much thought by anyone but myself. She ended up sending me to a Infectious Diseases Doctor..

By that appointment I had felt even better, and all the tests I had received at the hospital (all indicative of an autoimmune Disease) were taken again only to be better this time! well I FELT better, so is it possible my Lack of having a lupus flare simply caused my white blood cell count to go down. This doctor said my results were quite UNremarkable.... when I mentioned lupus he said the exact words "I doubt it"

We went home.. winter continued and In the midst of that I felt the best physically, although emotionally winter is the worst for my well being. I need summer for happiness. We threw around the idea of Gluten intolerance or celiacs (sp?) disease, because it runs in my family. After a while we took me off gluten as well as dairy (which I had already been off of for years) and I continued to improve it seemed..

Keep in mind, I had been used to feeling like death for so long, that even the slightest improvements felt relieving.

Now... fast forward to recently... April.. the sun has been shining bright on our East Coast and temperatures have been rising. I've been gradually spending more and more time outdoors. Two days ago I went to the beach. Within an hour the shortness of breath and dizziness began, within two my head began to pound. I had been eating well and drinking decent amounts of water (as always) It wasn't long before I retreated to the car to rest in the shade. (it was only about 55-65 degrees out, so it was not the heat.

That night I lie in bed unable to move, head POUNDING. ears ringing. pain all over. My back felt stiff and my legs felt achy. I was right back where I had been... and yesterday I felt the same. (it starts off okay in the morning and slowly gets worse throughout the day)

The thought of Lupus had disintegrated throughout the months before April because I had been feeling "better'' but now All these thoughts are re entering my mind. I know the solution of what I should do seems quite simple to others, well why don't I just go to my doctor again? Its not so easy, considering many factors on transportation, time to go, the fact that my medicaid will be gone in less than two months when I turn 18.

All I know is... for the past five years all my memories are me saying "I don't feel well" All my get together's with family and friends, all my lunches and dinners and evenings are me sitting out, me on the sidelines because I feel too ill to participate. I was always sitting out.

I'm tired of it.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 4/14/2014 3:14 PM (GMT -6)   
Sounds like you've figured out sunshine is bad for you. You need to see if you can get some sun protective clothes and hats.
I was a child of the sun growing up but now I live mostly in a room with blackout curtains. I have to go outside covered up from head to toe in the daytime. Night is a little easier but I have to avoid fluorescent lighting.
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! :))
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