It all started right after I turned 25 years old. I began experiencing joint pain, inflammation, and extreme fatigue. There were days that I could not get through my days at work without feeling like I needed a nap at 3pm. There were days when performing my job (as a pediatric occupational therapist) felt so laborious and painful like I was trying to train for the an olympic sport. I was also constantly feeling like I was walking through quicksand.
The doctors initially thought it was Lyme’s Disease, but the medicine they prescribed didn’t change my symptoms. Then they thought I was depressed, but I was an incredibly upbeat, happy person… when I wasn’t in pain. It was very frustrating to feel all of these symptoms, yet not know what was causing them. It took two season changes, multiple doctors visits and finally a rheumatologist to diagnose my “invisible pain”. After a lengthy examination, the doctor said “This looks like a classic case of rheumatoid arthritis.” I responded “Isn’t that seen only in older people? I’m only 25, how could I have that?” I left that appointment heartbroken and my denial lasted another few months. Despite my emotions, I started taking Plaquenil a month later to see if I could get relief somehow from my continued symptoms. I had gone from a year round athlete to what felt like being a 95 year old. I couldn’t work out like I was used to because the pain and fatigue would take over.
So, I scaled back and focused on low impact exercise like nature walks and kept taking the medicine. I have to admit that bribed myself to take it everyday and sure enough I began feeling relief about 2-3 months later. My normal energy patterns were back and I was able to do more physically than I had when I was experiencing symptoms. That is when I started believing the doctor and my diagnosis. I also felt really comfortable with my doctor. She said my body was responding to the low levels of Plaquenil and that I could get back to more intense exercise, as my body tolerated. She was also a fellow cyclist and suggested I try a road bike since she knew cycling was something I loved and road bikes are lower impact than mountain bikes. A year later, I was training on my road bike daily (wearing protective wrist gloves) and I even signed up for a big challenge of riding a 75 mile MS bike tour with some friends. Completing that bike tour was a sign that I had taken control of my rheumatoid arthritis and had my life back. Yes, my life was forever altered but my diagnosis gave me clarity in how important it is for me to take care of myself.
It has been 8 years since my initial diagnosis and I’ve only had one severe (what I call a “real”) exacerbation of symptoms that lasted for a few weeks and I had to take prednisone. The joint pain/inflammation are still there occasionally in a few key joints – wrists, fingers (more on my left hand), elbows, and my lower back. The fatigue is another symptom that persists, especially during rapid weather changes (within a few days) or when I am not consistently taking my medicine. I also tried one trial of cutting down and ceasing the meds, as advised by my doctor, but that only lasted two months before the symptoms came back.
It takes steadfast commitment to myself to control this disease. When I frame my mind to remember that it is, in fact, a disease then it is easier for me to remember that it will not just go away. RA has become a part of who I am, not my whole existence. My RA is now “invisible” in a way that is comfortable for me – controlled with the proper management to help slow down the disease progression so I can enjoy my life to the fullest.
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