I AM NOT a nurse, doctor, therapist, nurse aide, or any sort of healthcare worker. In short, I do not have any answers, only questions. I have had nearly 40 years of chronic pain to come up with my questions, but it is only now that the time feels ripe to pull all the questions together and air them. Research into chronic pain is starting to catch up to the demand, maybe because attitudes within the medical community toward people with chronic pain have changed significantly, or because chronic pain patients are a drain on the healthcare system financially which means there is pressure to “solve” the problem, or because, perhaps with the increase in life expectancy, there is a greater recognition of the supremacy of quality of life over number of years.
So a little background. When I was 16, I was diagnosed with juvenile rheumatoid arthritis, swollen painful joints. A little later, I was diagnosed with hypoglycemia – the swollen and painful joints were much improved by cutting sugar and other carbohydrates from my diet. For 20 or so years, life went on sometimes painfully, sometimes not. Sometimes diet helped, sometimes not. Around the turn of the century, I was hit with more and more painful joints and eventually, after lots of testing, my doctor told me to go read some books about fibromyalgia. A trip to a rheumatologist and I had a new diagnosis. By then I had gained 75 pounds and my life was grinding to a halt. While a diagnosis was a relief, it came with a stigma as well. After all, there was nothing wrong with me, never had been.
While I am very pleased (in a warped sort of way) to say I have other diagnoses now – osteoarthritis in my knees and back, bilateral trochanteric bursitis, bulging discs throughout my back, paroxysmal atrial fibrillation, severe obstructive sleep apnea, past history of massive pulmonary embolism… there may be more – these disorders do not account for the general overall pain I feel on a daily, hourly basis. There are times of overwhelming frustration and hopelessness. And this is where my questions come in. What exactly is fibromyalgia, what can be done about it, who is trying to do something about it, when will there be a cure, can there ever be a cure…? So I hope this becomes a place where we can share our questions with each other, find more questions, share ideas, management strategies, etc etc etc….
The doctor who originally steered me toward the fibromyalgia diagnosis gave me some very simple advice: “Every day will be like climbing a mountain. No one will ever understand what you’re dealing with, but always keep climbing the mountain.”