My RA Journey: The Stages Before and After Diagnosis
So you’ve just been told that you have rheumatoid arthritis. It probably isn’t a complete surprise since you consulted with the doctor because you were having symptoms. In fact, the diagnosis may provide a sense of relief as you can now move forward with better targeted and more effective treatment and management approaches.
My personal journey with RA has come in stages.
Stage 1 involved telling my primary doctor that “something just isn’t right with my hands. They are achy and somewhat stiff.” The blood tests revealed nothing too interesting, meaning that my rheumatoid factor level was “normal.” However, I did have a slightly elevated SED rate which indicates non-specific inflammation somewhere in the body. I tried treating myself with an analgesic topical cream, Aspercreme, on my hands. It was hard to tell if that helped or not.
Stage 2 (which occurred a few years later) involved undeniable pain and a disturbing level of dysfunction in my hands and fingers. I was making uncharacteristic mistakes at the piano and my wrists were hurting. At the time, I didn’t associate my experience with the grossly swollen shoulder I had developed months prior to the problems with my hands. This time I consulted with my neurologist. Attempted treatment approaches included double doses of a non-steroidal anti-inflammatory medication, Aleve (naproxen), and wrist braces of which I have at least 3 pairs. This stage ended with consultations with a hand surgeon and steroid injections for supposed carpal tunnel syndrome.
Stage 3 began when the hand surgeon referred me to a rheumatologist. By the time I saw the rheumatologist, I was able to use my hands again due to the steroid injections. But during our first meeting, my new doctor diagnosed me with RA after discussing my medical history, reviewing x-rays and past blood work, and using an ultrasound machine to visualize inflammation and mild bone erosion. There it was...I finally had a diagnosis of rheumatoid arthritis and now we could begin to do something about it.
As a newly diagnosed patient, my first concern was to stop the current pain and try to reverse some of the minor deformity (specifically a boutonniere finger). I quickly began treatment with triple therapy, a combination of methotrexate, sulfasalazine, and hydroxychloroquine (which I didn’t take for very long due to side-effects). I also began seeing an occupational therapist to learn joint protection techniques and to receive therapy for my hands and fingers. By the way, warm paraffin dips feel lovely and sleeping with pressure gloves on reduces some of the swelling which occurs at night. Those few first months were very encouraging as I began to see and feel improvements. I still practice some of the exercises my hand therapist taught me to protect hand function and to maintain strength and agility.
Finally, stage 4 of my journey was the time that I connected with patients in online communities and researched all treatment options. Prior to diagnosis or initial treatment decisions, I had not jumped right in and immersed myself in the world of RA. I had blindly followed the advice of my rheumatologist while I did make the small request to “do something about my deformed fingers.” My doctor is the one who guided treatment choices and sent me to someone who could teach me one-on-one about how I could better care for myself for the longterm.
I’m glad that I was already well-established in a treatment protocol before looking into other options. I didn’t feel pressured into making any different choices, nor did I rush into making changes. This is the time, however, when I did approach my doctor about changing treatment to a more powerful drug.
Looking back, I wouldn’t have done too many things differently, except that I would have asked for a referral to a rheumatologist even after my blood tests looked normal at the beginning of this journey. An earlier diagnosis would have been preferable. What happened once I was diagnosed is just what I would recommend to anybody else: begin disease-modifying treatment, start physical/occupational therapy, learn joint protection techniques, learn about the disease, and connect with other RA patients.