Two weeks ago tomorrow, I was diagnosed with rheumatoid arthritis. For more than seven months, I have been struggling with profound pain and unexplained symptoms. I’ve been all but clear with my followers in discussing my health problems, and I am so grateful for the support I’ve received in reaching a diagnosis. The diagnosis of an autoimmune disorder paints an uncertain picture of the future. I am approaching this obstacle with the utmost optimism and patience, and am openly considering and valuing all recommended courses of treatment.
How It Started
One night in May, I woke up with throbbing pain in my right hand. My wrist, thumb, and first knuckles were in so much pain I sat up the rest of the night crying. I went to the doctor two days later after the pain didn’t subside, convinced that I had sustained some sort of injury. The doctor did several physical tests and asked about any recent known injuries as well as my job and how I use my hand. No definitive diagnosis was given, but I was placed in a wrist brace for 6 weeks and instructed to take ibuprofen daily for pain and to reduce inflammation.
After six weeks of wear, my wrist was significantly better. I spent much of June and July relatively pain free and unrestricted by my wrist and knuckle issues. In early August, the pain returned in a very similar way, but was evenly distributed across both hands. My left and right wrists and knuckles were throbbing for a week before I returned to the doctor. He was concerned at my return and immediately took blood and referred me to several specialists including a neurologist and rheumatologist.
In the time waiting for these appointments, I developed a very strange, dark rash across my right-hand knuckles. I saw a dermatologist who biopsied the rash, and found “nothing particularly interesting for a dermatologist.” Two doctors and several months later, I began compiling a daily list of my symptoms and logged my pain daily for nearly 100 days. The following list reflects a summary of the past few months:
- Sore hands, knuckles, knees, feet (toes/ankles)
- Hair loss
- Sores in mouth
- Swollen joints
- Rash (hand, face, chest)
- Sores on feet
- Shortness of breath/increased anxiety
- Low grade fever
- Prolonged cough
- Increased food allergies/severe reactions
What I Know Now
According to my doctor and the Mayo Clinic, rheumatoid arthritis is a chronic inflammatory disorder that can affect more than just your joints. In some people, the condition also can damage a wide variety of body systems, including the skin, eyes, lungs, heart and blood vessels. After discussion of this condition and related autoimmune diseases with my doctor, nothing made more sense. I read online countless stories and accounts of patients with the exact same symptoms as mine, and making pleads for clearer treatment plans. I spent a large part of the past year angry at western medicine for the slow process – not only in diagnosis, but in waiting to be seen by specialists. RA, among other autoimmune illnesses, often cause flares or periods of increased severity. This pattern of pain and symptom manifestation is not only unpredictable, but stressful and anxiety-inducing due to the prospect of waking up daily in immense and seemingly unexplained pain.
One of the biggest struggles I have faced throughout this time was the fact that four separate rounds of lab work reported that I am a relatively healthy 24-year-old — on paper. Despite having very physical symptoms and family history of autoimmune disease, I consistently felt like I was under-believed and under-diagnosed as I documented, explained, and showcased symptoms. I fortunately have never experienced serious health issues up to this point, but I am so sorry for and supportive of anyone who has had to deal with an unseen illness and had to serve as your own advocate to receive adequate care or treatment.
As for treatment, I was placed on Meloxicam –a nonsteroidal medicine prescribed for the treatment of RA and severe inflammation. After just a week, the severe stomach pain and disorientation I experienced on this medicine caused me to discontinue use. I am currently prescribed Piroxicam, but have not yet seen any demonstrated improvement in my condition. One of the most life-changing aspects of this process has been losing my hair. I’ve always treated my hair as an accessory to my personal style, and losing it by the handful every time I shower has forced me to completely rethink how I treat it. Not only have these symptoms been overwhelming, they have been incredibly humbling as I have been forced to change my lifestyle to accommodate my newfound physical limitations. I am completely open to considering and furthering researching any means of treatment necessary including homeopathic and pharmaceutical paths. I have made small changes to my everyday life by changing my diet, sleeping schedule, and even apparel to better accommodate pain and swelling of my joints. I’ve been so lucky to partner with Dr. Scholl’s Shoes and Third Love to try out shoes and bras/underwear, respectively, that are designed for better fit and ultimately relieved pain/discomfort. I wrestled with the idea of sharing this information publicly – in all its disgusting, unattractive, and un-glamorous glory. Ultimately, I believe that the internet supports a great sense of community and I hope that my experiences not only lead to suggestions and recommendations for my disease management, but also help guide others battling the same experiences.