Since August of 2013, I’ve been experiencing severe pain, weight gain, swelling, and exhaustion. I’ve been hospitalized a couple of times and taken many trips to the ER. During 2013, I was diagnosed with high blood pressure, a pericardial effusion, pleural effusion, chronic migraines, and chronic iron deficiency. In 2014, I was diagnosed with fibromyalgia, gastroparesis, Raynaud’s phenomenon, thyroid nodule, and vitamin d deficiency.
In April of this year, I travelled to the state of Maryland and went for a Rheumatology evaluation at Johns Hopkins Hospital. During my evaluation, the doctor reviewed my complete health history, including radiology reports and medications. I had the usual insane amount of vials (14-16) of blood drawn. Within a couple of hours, I was diagnosed with Rheumatoid Arthritis (RA) with moderate disease activity, Lupus Suspect (Lupus symptoms and flares without positive serum), and osteoarthritis. The JH doctor also recommend I follow up with my Gastroenterologist for biopsy for Whipple’s Disease (results were negative).
I walked out of there in disbelief. After 2.5 years of pain, hospital stays, emergency room visits, appointments, testing, retesting, medication trials, and hair loss… I had a diagnosis!
I returned to my home state with a positive outlook on my future. After careful consideration, I switched back to my original Rheumatologist. She read the medical report I obtained from JH and suggested I be weaned off of my daily 4mg Methylprednisolone, due to long time use. To be weaned off of the Methylprednisolone, it was replaced with Prednisone, which comes in 1mg pills. My rheumy instructed me to start with four Prednisone pills daily, for three weeks. Every three weeks she instructed me to lower the number of pills by one. At that time, I was on 14 daily prescriptions, so the thought of getting rid of one was cause for celebration.
My RA is being treated with Methotrexate 15mg weekly. The United States National Library of Medicine states Methotrexate is prescribed to treat severe psoriasis that cannot be controlled by other treatments. Methotrexate is also used along with rest, physical therapy, and sometimes other medications to treat severe active rheumatoid arthritis (RA; a condition in which the body attacks its own joints, causing pain, swelling, and loss of function) that cannot be controlled by certain other medications. Methotrexate is also used to treat certain types of cancer including cancers that begin in the tissues that form around a fertilized egg in the uterus, breast cancer, lung cancer, certain cancers of the head and neck, certain types of lymphoma, and leukemia (cancer that begins in the white blood cells). Methotrexate is in a class of medications called antimetabolites. Methotrexate treats cancer by slowing the growth of cancer cells. Methotrexate treats psoriasis by slowing the growth of skin cells to stop scales from forming. Methotrexate may treat rheumatoid arthritis by decreasing the activity of the immune system. United States National Library of Medicine
For over 11 months, I’d ingested this medication in pill form. For over 11 months, this medication had made me sick to my stomach. The weekly nausea and diarrhea left my stomach sore and body exhausted. A couple of weeks ago, I began injecting methotrexate weekly. Pain wise, it isn’t as bad as a thought and I experience fewer effects.
I don’t know about anyone else with invisible autoimmune conditions, but due to constant pain and fatigue, I found myself isolating myself from people. As someone who’s easily affected by other’s energy, I am extremely sensitive of affecting someone else’s. So, if I attempt to spend time with people, I try to be in a positive mindset, which at times exhausts me. As for appearances, outside of the occasional limp, and pained expression, and swollen hands, I look healthy. Meanwhile, my body is in constant pain and I’m exhausted. Although the pain is manageable most days out of a week, the days it isn’t, are HORRIBLE! My RA flares consist of stiffness, tenderness, achy, burning, throbbing, knots, and swelling of my joints. My “Lupus Suspect” flares consist of RA flare symptoms, in addition to, muscle pain, nasal ulcers, hair loss and inflammation of body tissues, the most serious tissue affected is my pericardium (the sac holding the heart). My Fibromyalgia flares involve widespread pain, poor memory recall and extreme fatigue. There are times when I experience these flares separately. Other times, I may experience a combination of flares. As I previously mentioned, experiencing these flares are painful, but the days following flares are not a walk in the park either. My body and mind are usually exhausted from the trauma of the flare.
So, I said all that to say, obtaining a proper diagnosis was very helpful in my treatment, but it hasn’t changed my life in any way.
On a positive note, I was reminded by one of my Chronically Ill sisters that social media isn’t always negative. The Health Groups and personal connections made can be very positive and encouraging. Thanks for the reminder Jenn! Even though we have never met in person, my love and concern for her well-being is sincere.
Until next time.