UGH. DOUBLE UGH.
As some of you know, I have Hashimoto’s Thyroiditis which even though it sounds like a special on a dinner menu is an auto immune disease. Before being treated for that, I was formerly diagnosed with Fibromyalgia. My Endocrinologist gave me Synthroid when, after menopause, I was diagnosed with an underactive thyroid. Synthroid brought my thyroid levels back to a normal range but I still felt absolutely horrible. Months and months later I found my way to a Rheumatologist who diagnosed me with Fibromyalgia and prescribed Cymbalta. I still felt horrible and about a year later I found my guru Dr. who is the Head of Auto Immune Diseases and Rheumatology at a NY hospital. I think I might be in love with him… he’s a genius.
I take Plaquannel every day. And folic acid. Oh, and methotrexate with a high dose of Vitamin D, twice a week. It pretty much takes me out of commission 4 days of the week because my stomach rages against the methotrexate for two days each time I take it. I take Cymbalta for the Fibromyalgia (which I may or may not have) and an anti-depressant used for anxiety issues. I am my own chemical compound. I was also on Prednisone which at high doses makes you feel incredible, high, and young and when you lower it significantly and slowly, you feel like you are in the movie “Cocoon” where the elderly first are given a special potion to feel young and fabulous and later on it goes away and they feel old and horrible again. Heartbreaking but true. I’m not proud of all the medications I have to take but I am not ashamed either.
According to my guru Dr. in the city “Fibromyalgia is a lazy diagnosis.” His theory is that anyone with an auto-immune disease like mine will feel achy, fatigued and have muscle pain. To me, the patient, I don’t care what you call it, as long as you can help me feel better.
It took two complete years to even get on the right track of my initial diagnosis and while I think I am on the right track, it doesn’t mean that I feel swell all the time. It means I feel better and have learned to handle and predict certain situations. I am also 53 and not 23 and that does make a significant difference. Somewhere in this medical mystery of mine, I have had many broken bones, sprains and torn ligaments; I think there is a connection with the Hashimoto’s but not definitively. All I know is that it hurts and takes a very long time to heal.
My experience with the above urges me to say the following: If you feel that something is wrong, believe it. My internist didn’t believe me at all and actually left the office in a huff when I started crying from all the pain. Go to different doctors for their opinions. Don’t be scared that Dr. Jones will be insulted if you see Dr. Stevens. Nobody cares. Hardest but most important of all, believe that you will get better! You may not be perfect but you will be better and you do need patience for that. Keep trying and keep believing that you will not always feel this bad. Believe me, I am still learning and relearning that lesson every single day.