My story...so far
For the past three years my health has been sliding downhill and no one can tell me why. I feel like my life is going by and I'm not part of it!
When I first got sick it was just a regular cold...that turned into bronchitis...that turned into pneumonia...that turned into a sinus infection...that turned into chronic sinusitis. I was ill from September to April straight through. My brain fog was so severe that I had to take a leave from my graduate program.
I complained often of random joint pain, awful fatigue and constant migraines. My doctor tested my ANA and it came back positive 1:160. I was sent to a specialist who told me my problem was depression and that she had no help to offer. I sat in her office and cried when she left the room - that only made her more resolute in her diagnosis.
The following year I was barely moving I was so tired. Migraines kept me locked in my room in the dark. A trip to Cancun with my husband seemed to make everything much worse. On a sunny day touring the ruins, I felt so flu-like that I had to go back to the car and sleep. It was the start of the whole swine-flu thing, so everyone assumed that's what I had. When I got home I tested negative for that.
My doctor said he was concerned about Lupus. He did another ANA, this time it was 1:320. He sent me to another specialist (much nicer than the first). She ran the ENA panel and found no positives for anti-dsDNA, anti-Ro, anti-Sm. She diagnosed me with "fibromyalgia" even though muscle pain was not one of my symptoms! She said that I did not have an autoimmune disease and she could offer me no further help.
Fast forward to today. I still feel flu-like many days. I could sleep forever. My thyroid is excellent, but If I have a busy day or push myself a little too much, I pay it back with being sick for days. My migraines have calmed down, but now I have other weird things happening:
- my hair is falling out!
- I have 'pins and needles' feeling in my lower legs and feet (drives me crazy)
- my tongue is wearing a white-wool coat in the morning
- fatigue, fatigue, fatigue
- brain fog again (can't concentrate on my studies at all)
- sinus congestion
- light sensitivity (cannot stand florescent lights at all, sunglasses when outdoors)
- low ferritin, but not anemia (despite taking heaps of iron supplements)
I never wake up feeling well. I used to be an active person with a full life, and now all I do is sit on my couch watching Law and Order reruns. I have a history of depression, but it is well controlled. My mood is actually good and my doctor doesn't think my physical symptoms are at all related to my mental health.
My doctor repeated my ANA a few weeks ago, it is now 1:640. I have an appointment with another specialist (3rd one) next week to assess possibility of SLE. I have a bad feeling that my other antibody tests will come back negative again.
People in my life think I'm lazy. They don't understand why I'm not my old self. I am desperate for a diagnosis. I need a name to call this thing that has stolen my life. If not lupus, what else could it be?
If you've made it this far, thanks for reading and thanks for this space to vent.
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