I’ve said it before: dealing with fibromyalgia is just a matter of decision making (not “just” but you know what I mean). You need to be able to say no sometimes, and you need to be able to say yes even when sometimes you know you’re going to walk (or crawl) away from an event feeling like a concrete mixer poured you into a trash compactor, and then the landfill bulldozers ran over you several times while spreading you evenly to mix in with the rest of the detritus.

Yesterday, I drove to Milwaukee, about 3-1/2 hours away, met up with a friend, then drove to Chicago, another 2-1/2 or so hours away, went to a concert in a venue that is just a stage and a floor to stand on – great for young folks who like to dance and mix – not so great for older folks with bad knees and feet and a mild anxiety disorder about crowds. But I said yes. And I’m glad I did. it was great fun. It was loud. It was a spectacle. I couldn’t bend my knees by the time it ended. My back was fixed tight in an uncomfortable sway after leaning against a bar. I could barely walk. Normally, I would have wanted to stay to see if the band members came out to meet people, but my friend was in as bad of condition as I was, and we slowly made our way back to the car. The car with seats. Padded seats. And quietness. It was great. I was so hyper-stimulated I was the worst passenger-seat driver for awhile, gasping when the car ahead of us braked, even reaching out to brace myself for no reason whatsoever, but that subsided, and I didn’t get kicked out of the car.

It’s always the next day that you know how much you have to pay for a crazy night of fun. Looking at pain scales

1. First, the regular doctor’s pain scale (head to toe, in general): 7
2. Second, the white noise pain (constant, usually low level, almost unconscious pain): 5 (usually about 2 or 3)
3. Third, the acute pain (sharp, shooting, random): 9
4. Fourth, non-fibromyalgia pain: 7 (knees and back with occasional 9s with movement)

Exhaustion levels are as expected. Do I regret it? Do I wish I’d said no and then stayed home watching movies instead? Nope, not a bit. Projected recovery: by the end of August (2 weeks). No worries. I can do it.

Twenty or so years ago I said something (rather stupidly) about what in the world will 80 years old feel like when I already feel 80 years old? It was a stupid thing to say because I definitely didn’t feel 80 years old twenty years ago. I was just tired, and my joints hurt all the time. Now that my parents have hit their mid-80s, I’m getting a better sense of what 80 might feel like.

I’ve read a couple studies about how people with fibromyalgia age (I’ll try to get them in the bibliography), and the results surprised me. Multiple studies indicated that fibromyalgia symptoms LESSEN with age. I would not have guessed that at all. My own symptoms have increased every year for maybe the last 10 years. This year is no exception. But there is a difference. This year, NON-fibromyalgia issues have overtaken fibromyalgia itself. Since April Fool’s Day, I’ve had ischemic colitis (explained as life-threatening and I’m lucky I didn’t lose part of my colon), endometrial hyperplasia (chronic bleeding for a couple months), good old-fashioned bronchitis w/sinus infection, discovery of (more) colon polyps, and an abnormal mammogram resulting in a biopsy. Four of five were indications of cancer – I have no cancer. I’ve been biopsied right and left, and no cancer. What I did have was a lot of pain, even more excessive fatigue, and for the first time EVER a doctor saying, “Of course you’re tired, you’ve gone through a lot. Just rest and recover.”

Now that I’ve rested and recovered from all that other, “real” stuff, fibro is back to filling in the pain/fatigue gap left with the departure of “normal” ailments. So maybe getting old with fibromyalgia doesn’t necessarily mean relief from fibromyalgia but that other things (worse things) take over the fibro role. Since fibro is really “nothing” (pain with no purpose), it can blend easily in with pain with a purpose. It also adds to the burden of the pain since our brains perceive pain (with or without purpose) differently (more intensely) than “normal” people.

I have to use my parents to decide what 80 really feels like. My 85-year-old mom is chronically healthy, a bit like Wolverine in healing abilities, but lately she’s complaining… Lifting her arm straight up over her head, she complains that her shoulder aches when she does that. Neuropathy in her feet, burning and aching. She complains that she goes to sleep tired and wakes up unrefreshed. A knee that has slowed her down a lot from walking the two miles a day she’s used to walking. Pain in her hands… I listen sympathetically, yet realize, “Wait, those are exactly the things I’ve complained about since I was about 15.” So maybe I HAVE felt 80 years old for the last 47 years?