My Story
Hello all,
I'm not really sure how to really put most of this into words, but I'll do my best. I'm 34 yrs old, and have had chronic daily migraines since I was about 21.
Long road to RA diagnosis
I also have autoimmune thyroid disease (Hashimoto's) which started when I was about 11, and irritable bowel disease which also has an autoimmune aspect.
My dad also has RA, so I was already predisposed to having another autoimmune disease or two in the health lottery.
My health seemed to reach critical mass in 2015, and I ended up having a grand mal seizure and underwent about a million tests, including bloodwork for RA.
My levels were elevated enough to flag the attention of my doctor, especially since I was already having days with bad (what I considered bad at that time) hand pain.
They decided it wasn't RA, and treated me as though I had carpal tunnel for the next 2 years as my hands became more and more painful.
Eventually I demanded someone recheck it and went to a different rheumatologist who formally diagnosed me a little over 4 years ago with RA.
Trying many treatments
Since then, I've tried 12 different medications, plus methotrexate off & on with most of them, but I don't seem to tolerate any of them.
I'm supposed to go to my Rheumatologist this afternoon to discuss finding yet another (lucky #13!). Most all of them have given me body aches; increased my migraines in severity & frequency; or even caused HUGE canker sores in my mouth, including on my tongue & in my throat.
I'm at my wits end with this and am feeling pretty frustrated & hopeless that we'll ever have success.
A progression of RA symptoms
I now have joint pain & swelling in my feet, knees, shoulders and pain throughout my back.
Naturally, my hands have gotten progressively worse through all of this since I'm not on a consistent treatment regimen, until I have days I cannot grip a glass of water because it hurts too badly or they swell until my rings are stuck on (they're a size large & fall off on other days).
I'm an artist, and it has gotten to the point that I can't do most of my art, or if I push through the pain and create anyway, my hands will be stiff and swollen until I can't bend several fingers the next day, and making a fist is completely out of the question.
I'm not sure where this all will end or if there's light at the end of the tunnel, but I joined this community because it's helping so I don't feel alone in this, so thank you all for taking the time to read and commenting, if you do comment. Just knowing I'm not the only one dealing helps a lot.
Sincerely,
Madeline
Join the conversation