May 12 is Fibromyalgia Awareness Day. Everything is turning purple to bring awareness to this terrible condition. In 2012 I was diagnosed with Fibromyalgia. This was the first diagnosis before all the other diseases started being diagnosed.
My Journey to a Diagnosis
I felt like the doctor gave me this diagnosis because she couldn’t find any other definitive proof that I had an autoimmune disease. It was years later that one neurologist got to the bottom of my search for help. As he was testing me for POTS, he told me that he thought I had Sjogren’s Syndrome. He sent me immediately for a lip biopsy and it showed a positive result for Sjogren’s.
Although I was hoping for a lot of help to make me feel normal again, that didn’t happen. After that diagnosis I was found to have: Osteoarthritis, Osteoporosis, Small Fiber Neuropathy, Left Bundle Branch Block, and Ehlers Danlos Syndrome.
What is Fibromyalgia?
Fibromyalgia is a chronic condition that causes wide-spread pain. There’s not a known cause but it’s a comorbid condition for those of us with a rheumatic disease. The causes include widespread pain, problems with sleep, and severe fatigue.
If a patient only has Fibro they may have a team of physicians that treat the various symptoms. Pain management, physical therapy, exercise physiologist, general and practitioner. This group of doctors may consult together or treat the patient separately.
I was treated as a patient in the rheumatology office. This doctor gave me some recommendations, tools weren’t time consuming, but I was very glad that my baseline ANA test was done. It was obvious that I had an autoimmune problem, but it hadn’t reached the point where a diagnosis could be made. That came a year later.
The National Institutes of Health give three recommendations for treating Fibromyalgia:
- Exercising at a gradual rate
- Educate yourself and get good support
- Combat Fatigue
These things can be accomplished by: cutting out stimulants, prepare for bed by calming down and unwinding, and pacing yourself so that you don’t overdo it. Read more about Fibromyalgia HERE.
I was diagnosed with Fibromyalgia in 1993/94. I had not heard of it.
Not the most pleasant of diagnosis. It was only after I had seen a number of doctors and they all came up with the same diagnosis that it was definitive.
I’m not glad that you have it, but it’s good that they all were in agreement.
I was finally diagnosed in 1984. Back then it was called Fibersitus. Every one thought it was in my head or arthritis. I told her my bones wasn’t effected. I got so bad I thought I was dying it hurt so bad.
I hadn’t heard that term. There’s nothing worse than being told it’s in your head.