Diagnosis After Years of Pain
Hi, I've been a member of this great community for a bit now. Waiting on a diagnosis, I think I've got one.....
Back in 2008, I was having extreme muscle aches, felt like the flu with low-grade fevers. Daily these aches were. Finally went to a doctor, diagnosed me with fibromyalgia put me on a med. I started this medication, 3 weeks later had to stop it. I was waking up in the middle of the night talking to the kids, one morning I woke up with an unwrapped uneaten ice cream bar in my bed! I also felt very aggressive, I used to be a very mellow unflappable person.
Jaw and back pain
Along with body pain, I started to have jaw pain 4 days out of the week. Horribly achy pain. In 2010, I had this back pain out of nowhere. The doc gave me Flexeril, which helped my jaw and muscular pain. For 2 years, I was a bit in denial about the fibromyalgia, then I started to believe.
Knee problems with PsA
As the years went on I felt ill and had body pain about 50% of the time. In 2014, I started training for the Susan G Komen 3 day walk. A couple of months into it, one knee got aggravated, then swelled, I just iced it and thought it would heal. In the meantime, I tried to continue to train. Then my other knee started to hurt, I stopped walking and dropped out of the event. Then I went through a downtime, and put on some more weight, which only added to the extra I already possess! Finally, I went to the doctor, had some tests done. Only after insisting, they just said, it's osteoarthritis and my weight. Turned out after insisting it was more, like a meniscus tear, guess what? It was a meniscus tear. Inoperable.
A year later, I was having neck pain. Went through PT, massage, and acupuncture. No help. Then came the back pain, torn achilles in my left ankle, then in my right.
Getting multiple opinions
In 2018, my hands, wrists, and elbows started to hurt. My hands would wake me at night and just throb. Again I went to the doctor and was told it was osteoarthritis and weight. After many injections, medications, images, and 3 rheumatologists, I felt like giving up. Never having a moment living pain-free, it was too much.
I finally went to another rheumatologist outside my network. She also looked me over, sparingly and asked me why I was there after already having so many answers. I was in tears as I told her, "I know there is more going on in my body, you are not listening to me. You are only reading what is in front of you, the past notes of doctors. Please listen to what I'm saying to you."
She also said, "It's your weight, you have fibromyalgia and osteoarthritis. You need to exercise more." I bluntly told her through my tears, that wasn't going to happen. I'm in so much pain, can barely walk, and so tired I can barely do my daily care needs.
She finally said (I really believe just to appease me) she would order a full body bone scan.
Results from my full body bone scan
One week after the scan, I was notified to make an appointment. Got in that same week. I have spondyloarthropathy throughout my spine (inflammatory arthritis, either psoriatic or ankylosing spondylitis?) RA, in fingers hand, wrist, elbows, shoulders, neck, knees, ankle and feet, bilaterally. She told me the damage has been done, but hopefully, she could help with further damage.
So, I have just started Humira and will probably be adding methotrexate in 4 weeks.
Hopeful for the future
None of this comes as a surprise. 2 years ago telling my doctor I thought I had psoriasis because of my toenails dystrophy. And I thought PsA too. No one listened. So I'm not in shock, just relieved to finally have it validated, and more relieved that perhaps my disease will stop progressing at such a rapid pace. Maybe in the near future I will have some pain free days. Or even just a little less pain...
Thank you for letting me tell my story, and soon I will believe this all has happened for a reason.
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