I use Twitter—a lot. Mostly, I use it to connect with other spoonies—people with chronic invisible illnesses. (Read this to see how the spoon theory started.) It’s been a huge blessing. Living with undiagnosed chronic pain can feel quite lonely. The people in my life are incredibly supportive, but at the end of the day, they don’t completely understand what I go through. Twitter has helped me find people who get it. The #spoonie hashtag has gotten me through these last 7 years.
I stumbled upon Britt while skimming through the #spoonie hashtag, trying to give back some of the support I’ve received. She announced that she would be tweeting every moment of her day for the next 48 hours. I thought this was a kick-ass idea. Here was a chance to help people not living with chronic pain to understand what it’s like. There’s a mega stigma around invisible illnesses, even more so around pain. I cannot count how many doctors have accused me of hunting for narcotics or brushed me off because they couldn’t see anything wrong with me.
During Britt’s 48-hour period, something amazing happened: other people began tweeting their #ChronicLife experiences, too. I didn’t realize that anyone could jump in, until my pain buddy @DerekActual gave me the heads up. @HurtBlogger encouraged me to join and offered to add me to her list.
I will be tweeting a day in my #ChronicLife for the next 24 hours, but thought I should give you the Sparknotes version of my condition.
- My joint pain started in 2007, in my hands and wrists. It first manifested as numbness, but quickly changed over to pain. Initially, my doctor thought I might have carpal tunnel.
- In the last 7 years, I’ve developed pain in most of my joints: feet, ankles, knees, hips, lower back, elbows, hands, wrists, shoulder blades. Sometimes my ribs and jaw even hurt.
- My old PA suspected it was something autoimmune, but my blood work is always borderline or negative.
- I have seen dozens of specialists, including several rheumatologists. None of the rheumatologists wanted to diagnose me without a positive rheumatoid factor. There is great debate among specialists as to whether someone can have RA with a negative RF.
- I am currently in my longest and worst flareup, which started November 18th, 2014.
- My pain decreases when I am on Prednisone, but as soon as I finish it, the pain comes back with a vengeance.
- I recently had an MRI of my right hip done, because it’s been so painful. It came back with some baffling results that none of my doctors can seem to explain: “small synovial inclusion cyst or herniation pit” and “subcortical bone marrow edema.” I am currently waiting to see an orthopedic specialist, in the hopes that he can explain it.
- Personally, I think that I have Rheumatoid Arthritis. I have all of the symptoms, except for the positive blood work. According to an NIH article, 60% of RA patients are seronegative. I am concerned that my MRI results are signs of RA degeneration, and am looking for a rheumatologist who is more willing to diagnose me based on my symptoms, rather than just my blood work.
It’s been a very frustrating last 7 years, to say the least. I can’t work a “normal” job because of the pain, but haven’t been able to get a diagnosis and treatment. On the bright side, this has left my days wide open for writing.
Follow me on Twitter for my #ChronicLife story.