When I was first diagnosed with fibromyalgia, my doctor (who, I’ll add, never-not-once implied the pain was all in my head) told me the disease was non-degenerative — meaning that as bad as it might get, it would not get continually worse over time. I clung to this like a drowning rat to a deck chair off the Titanic.
But now, I’m reading some things that suggest maybe the good doctor was misinformed. For instance: Dr. Mark J. Pellegrino. Now, in addition to being named after an awesome and overpriced imported water, Dr. Pellegrino both treats patients with, and suffers from himself, fibromyalgia. He even wrote a pretty helpful book called Fibromyalgia: Up Close and Personal. (Full disclosure: that’s an affiliate link and I’ll get, like, thirteen cents if you buy it from this link. Or something.) The guy knows fibro backwards and forwards, you might say. Dr. P. had this to say recently in an interview with ProHealth.com:
Q: Doctor, in your experience does fibro get worse over time or does it get better as you get older?
Dr. Pellegrino: In my experience from seeing more than 20,000 people with fibromyalgia over the past 20 years, I can say:
• About a third of the people do better over time,
• A third of the people stay the same,
• And a third of the people get worse.
So that means that two-thirds of the people will not get worse which is good.
Those who are diagnosed quickly after developing fibromyalgia symptoms and tried different treatments and find successful treatments are more like to do better over time. As we all get older, we tend to develop other conditions from degenerative factors, wear and tear, injuries, etc. that cause pain and can make fibromyalgia even more painful.
I think the key is not necessarily trying to get better, but trying to have a stable baseline where one’s function is good and a good quality of life is reported.
Now, obviously, this is one doctor’s experience. Granted, it’s extensive experience, but still — anecdotal. However, if a third get worse — even if it were somehow implausibly just his third — well, that’s a horse of a different color, as my father used to say.
This question is important to me personally because I have experienced such a downturn in my health in the last 12 months or so. Most of this downturn I can directly attribute to the other chronic conditions, but I also know fibro pain from my general back pain. I can tell which is which, and what I’m feeling is not just bad back pain. The fibro, when it flares, is definitely getting worse — although I haven’t seen a significant increase in the frequency of flareups, so that’s something, I suppose.
So what I want to know is this: what’s the general consensus? Is there a general consensus? Or is this disease as maddeningly unpredictable universally as it is individually?