I haven’t really ever talked about how much pain I’m in publicly. But I’m going to now, because I have just started in a pain management program. For the first time in many years, I think I’m making real progress.
When asked how long I’ve had chronic pain, it’s hard to answer. I remember not doing things because I hurt too much when I was a teenager. Some of that was when I was 13. I remember times when I was so sore I could barely move before tap dancing class.
I remember when I seriously took up ice skating when I was 20 that even putting the boots on my feet hurt incredibly. And it got worse, but I still did it. I remember fracturing my wrist in a fall because someone else was being an idiot on the ice. I put my hand out (sigh) to break the fall, and the friction from that was so intense that it burned the imprint of the knit pattern on the glove into my hand for two weeks. That wrist was sore for years, and the rest of me didn’t feel so hot for quite a while, either.
Then there was the time I fell down the staircase at my office. My partner and I were running a partnership then. I landed on my chin, did some horrible things to my jaw, and it was pretty awful. The chiropractor who put my jaw back into whack said, “You’re gonna scream.” Despite not wanting to, he was right. I did.
I also remember the fall on the ice when I lived in Vermont. The fall from which my knee has never quite been the same. Didn’t help that I severely re-injured it a couple of years ago falling outside a church in Norway.
What I can’t remember is not having debilitating chronic pain. I’ve had it since I was a teenager. I hid it the entire time I was in Scientology, because only degraded beings were in chronic pain. You were treated better if you pretended you weren’t chronically ill. (I also had other chronic illness things going on then, but that’s another story for another time.)
Putting a label on it and developing an effective treatment plan for it, though, that’s another problem entirely.
What’s been clear to me for years is that I have super-tight muscles. My ginormous calves have no real significant fat on them, just bone and tense muscle. When I was a teenager, I remember finding a painful lump in my thigh muscle, afraid it was cancer or something.
No, it was just a sign of what was to come.
Eighteen years ago, I was diagnosed with fibromyalgia. Painful when poked in the typical places? Check. Over the years, I’ve become increasingly dissatisfied with the diagnosis because fibromyalgia doesn’t actually describe my day-to-day pain very well.
Ever tried to argue with a diagnosis that seemed set in stone? Going to a rheumatologist in 2011 got it firmly entrenched on my chart, which was even more frustrating.
It was like “You have fibro. We are done.” And, “I can’t prescribe (this medication that helps your pain) because that doesn’t work on fibro.”
And yet, I do understand Occam’s razor, it’s just that Occam’s razor suggested it had to be something else because reasons.
That led to rounds of doctor shopping (and firing) until I happened to get the right one in December. The one who told me that Kaiser had a pain clinic and actually referred me to it. Which I went to a week and a half ago.
Joke’s on Me
So, guess what?
I do have fibro.
I was right, though, that’s not the major source of my pain. What is?
Myofascial pain. From the Wikipedia page:
In fibromyalgia, chronic pain and hyperirritability are pervasive. By contrast, while MPS [Myofascial pain syndrome] pain may affect many parts of the body, it is still limited to trigger points and hot spots of referred pain.
So, I have both pervasive chronic pain (from fibro) and irritable trigger points (from fibro and myo) and referred pain (from myo). I’ll tell you right now, that referred pain covers huge swaths of my body.
The myo explains so much. The muscle tension in my neck and head is so severe that it can change my vision (I have gotten diagnostic imaging for this, btw, it really isn’t visible on a scan). This led to uncomfortable conversations that basically boiled down to, “Oh, you’re fat. Therefore it must be diabetes and therefore macular degeneration.” Even though macular degeneration doesn’t describe the reported symptoms at all.
Some days I’ve had shooting pain, and I was wondering if I needed another cardiac look-see. That’s apparently not unusual. But you say, “If I stand too long on my feet on a hard surface, I get shooting pains up my body.” And a doctor sees you’re fat and therefore it must be diabetes (even when your sugar numbers are and have been normal) and the specific symptoms don’t describe diabetic neuropathy. Nor could you possibly have had diabetes long enough to get diabetic neuropathy, because if you’ve been paying attention, you don’t get that far that quickly.
In other words, everything was reduced to: 1) you are fat; 2) you have fibro; 3) you must have had diabetes for like a decade to get your nerves in this shape even though the blood tests don’t agree; 4) can’t see anything on the scans, so it must not be serious.
So I’ve had all this diagnostic imaging and ignored symptoms for years (including the imaging for both head and heart)—and yet no one picked up what it was. Until now.
What This Means in Practice
On a day-to-day basis, here’s the reality I face—and have for years. I wake up with enough pain to be nauseated. I have medication for that, but I can’t take it on an empty stomach because it makes it more likely that I’ll throw it up. Apart from the not-wanting-to-throw-up part, if you throw up partly digested medication, what’s the right dose to take to replace it?
So, I have to take pain meds with food. Coffee works pretty well as an anti-nauseant for me, actually, so long as I drink it with milk. So: coffee first, pain meds with coffee, cook the breakfast, then eat to stabilize the stomach against the meds. Then, and only then, can I do other morning things like taking a shower and getting dressed, because it hurts too much to stand in the shower before the medication starts to kick in. The shower helps reduce pain once I’m to the point where I can handle it.
Only after all of that can I walk like something even vaguely approaching a normal person, though the myofascial muscle tension is typically still a problem. It gives me a strange gait at times. We ruled out MS, but that was one of the things I’d been worried about, given that my capability to walk is so random, even within the same day. Sometimes, even within the same hour.
And Then There’s Yesterday
So I’ve been doing better after a medication change that the pain clinic doc put me on. The other day, I forgot pain meds for the first three hours I was awake.
Yesterday, I took a shower first, then walked (almost like a normal person) to make coffee. Only as I was standing there making coffee did I realize how remarkable that was.
Of course, by the time breakfast was ready, I was shaking. It’s still progress, though.
Originally published at deirdre.net. You can comment here or there.