Each one of us has a unique story of how we learned about rheumatoid arthritis and about the immune system which has decided to attack our own body tissue to cause inflammation and damage. Here is my story.
I am a classically trained pianist who spent her undergraduate years practicing piano 4-6 hours each day. Lots of repetition, developing great hand strength and finger coordination. In a very real way, I understood my world through my fingers.
I even knew how words were spelled by the "feeling" of my fingers on typewriter keys. Yes, this was before I had access to a computer. I only had to mentally type the words in question to know which letters to use when I wrote.
So when my hands began to feel a bit odd 7 years ago, mostly heavy and thick, I mentioned it to my primary doctor. Based on my symptoms we looked for possible lupus (my mother has SLE), rheumatoid arthritis, hypothyroidism, and overall inflammation. My nurse called with the results.
"Everything looks fine. Your SED rate is slightly elevated, nothing to worry about. We did find that you are slightly anemic so the doctor wants you to begin taking Iron supplements," said the nurse. I went on my merry way.
Two years later, similar complaints, similar test results. By this point, I had begun to use Aspercreme on my hands in an attempt to find some relief of the growing pain. Did it work? Not really.
The next year, I was diagnosed with multiple sclerosis which certainly turned my world on a different axis. Then just one more year later, I couldn’t use my hands. Literally couldn’t use my hands.
By this point, I already owned at least two pairs of wrist splints. Since I was spending extra hours on the computer, I thought that overuse and bad posture were causing symptoms of carpal tunnel syndrome (CTS).
Eventually, I was waking up in the middle of the night screaming from the pain. Somebody was shoving my fingers into electrical outlets, at least that’s distinctly what it felt like.
My fingers had become curled into fists and I couldn’t open my hands, day or night. The fingertips were so sensitive that the slightest touch was painful. Consequently, I was not playing much piano and limited the demonstrations I gave during piano lessons.
Thinking that this might be caused by MS spasticity, I saw the neurologist again. He said carpal tunnel syndrome but I said this was not like any CTS symptoms I had ever felt before. He order electromyography (EMG) and nerve conduction studies (NCS).
On the left wrist, no evidence of CTS was seen. Ha! The technician said that I should have placed a bet with the doctor. On the right wrist, very mild CTS was seen. Ok, so we were both right. But the mild results did not justify the enormous pain.
We started out with conservative treatment: double doses of Aleve daily, wrists splint worn all of the time, and visits with the occupational therapist for ultrasound therapy. These strategies did not help and I was eventually referred to a hand surgeon.
During the first visit with the surgeon, he injected steroids into one wrist. Relief began the very next day. We could only do one wrist at a time because the hand couldn’t be used for anything for a few days afterwards or risk permanent damage.
I also asked him about my middle finger on the left hand which had become so swollen as to look twice it’s size. He briefly checked it out and thought it to be a possible ganglion cyst and "the least of your worries right now." Also noted was that there was no heat coming from that swollen finger.
During the next visit to inject the other wrist with steroids, I asked about the finger again. He x-rayed the hand/fingers this time, asked about family history of arthritis, and recommended that I see a rheumatologist. He even went so far as to say, "if you can’t get an appointment, call me and I will call the office to get you in."
When I finally met the rheumatologist (who also happens to be my mother’s rheumy), I took the x-rays with me, a note detailing my symptoms and attempted treatments, and a history of all blood work conducted for the previous five years. These items combined with an in-office ultrasound of my hands and joints earned me a diagnosis of rheumatoid arthritis.
Thus begins my story.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.