Chronic Pain / Deep Thoughts / Determination / Exhaustion / Fibromyalgia / Insomnia / Labels / Life / MPS / Myofascial Pain Syndrome

Semantics & Chronic Pain

As a recently graduated behaviourist, I can say that I spent a lot of the last three years looking at semantics. A lot of the time, they matter. The small differences in how people describe things or themselves—those can tell you a lot. I’ve learned to pay attention to tone of voice, facial expression, body language. Something as innocent seeming as a glance away or a finger raised to scratch a nose—those can tell more than a person realizes.
Other times, though, semantics just piss me off. This is one of those times.

Technically, my diagnosis is myofascial pain syndrome. But when explaining it to most people, I either simplify it as “a chronic pain condition” or simply state that I have fibromyalgia, though I haven’t been officially diagnosed with that (I’ll mention it to the doc at my appointment in September, okay? Don’t push me into going to a doctor. It never ends well). Why do I do that? Why do I not just say I have myofascial pain syndrome and leave it at that?

For one, telling most people I have myofascial pain syndrome gets me a blank look. Summarizing it as MPS doesn’t help, because even to me it just looks like a typo of PMS (though I’ve been known to have that, too). To be honest, I can’t blame them; when the doctor gave me my diagnosis, I looked at him vacantly and waited for an explanation. In my defense, it was eight in the morning and I really wasn’t awake—morning is so not my time of day—but eventually, between the quickly thrown together explanation from the doctor and my own online research later on, I was able to figure it out. Myofascial pain syndrome is a chronic pain condition, typically focused to certain areas, that bears similarities to fibromyalgia but isn’t as widespread in terms of pain. They bear some of the same traits, though, such as a tendency to sleep disturbances and so on.

Well, there’s where a problem started cropping up. Not long after I was diagnosed, I began to do more research and discovered that other symptoms I’d had for a while—things I thought were totally unrelated to my sore wrists, since I’d originally been given a carpal tunnel syndrome diagnosis years ago, and planned to ask my family doctor about—could actually be signs of fibro.

This is where it gets easier to just tell people I have fibromyalgia, since it’s a tad easier to understand and I stand a better chance of hitting something familiar in people’s brains. Fibro is something they might actually have heard of, so right off the bat I have a hope in hell of getting some understanding, maybe even some sympathy if they have an idea of what it is. MPS… so much. And trust me, when you have a chronic pain condition, being able to easily explain it and its effect on your life is a pretty big deal. It is utterly discouraging to try to explain and have people either gaze at you uncomprehendingly or say “Oh, that must suck” in that tone that makes it clear they don’t really get it.

Not only that, but while the rational part of my brain knows I could be jumping to conclusions and inflating my diagnosis, another rational part (I didn’t know I was so rational!) of my brain insisted that it makes no sense for someone who isn’t yet 22 years old to be so sore and in pain, not to mention feeling sleep deprived, headachey and who knows what else, so consistently. Since MPS can sometimes turn into fibro, and I had problems with my wrists (but no evidence towards carpal tunnel syndrome or anything else) for years before other symptoms started cropping up, it makes sense for this to be the case here.

This confusion likely could have been avoided, or at least reduced, if the specialist who diagnosed me with MPS had done more than say it’s a chronic pain condition, write the name of the condition on a piece of paper, and usher me out of the examining room. Ordinarily, I’d have stopped him and asked questions, but as I said, morning’s just not my time to shine, and I was already on a bit of a loop with what he’d thrown at me. Damn if I made another appointment, though, because it took way too long to get the first one.

Of course, I don’t like claiming to have something when it hasn’t been medically verified that I do have it. Is this a problem with the common cold or the flu? Of course not. We’re a fairly intelligent race; start coughing, sneezing, feeling achy, and possibly being nauseous, and you can probably safely assume you have a cold or the flu without being called a liar or charlatan. Still, when I get particularly hesitant about the terminology is when I usually resort to calling it a chronic pain condition and leaving it at that.

But when you feel sore and achy every day, it’s a different matter. People think you’re lazy or a hypochondriac who makes it up. That’s why I hesitate to slap so simple a moniker on it. I deal with so much more than that. Headaches. Sleepiness, even when I’ve slept twelve hours. A total lack of motivation to get up and get the day started. Difficulty even getting to sleep. My vision gets blurry. Some of my muscles like to twitch at random. Foil seals on food containers make my life hell. I can’t hold a plate one-handed for fear I’ll drop it.

And now, as six am crawls forward and I find myself having yet to sleep, I find myself wondering: when does being tired often turn into debilitating exhaustion? When does it stop being sleep disturbances and become an actual sleep problem? When does it stop being a sleep problem and become insomnia? When can I stop calling it one thing and finally give it a good, solid label, which feels like the first step to actually having a chance at dealing with it day-to-day?

Bloody semantics.


6 thoughts on “Semantics & Chronic Pain

  1. Eeep, Murphy! Hope you get it all figure out and treated so you can sleep because, let's face it, sleep is awesome. I highly enjoy sleeping. Oh and so you can live day to day w/o pain. 😉

  2. Sleep *is* awesome. I like sleep. The problem is that what I tend to do now that I don't have school or anything to schedule my days around is I stay up until I'm absolutely exhausted and then crash for eight hours or so. Like today, I fell asleep at 10:30am and got up at 8pm. BACKWARDS. >.<As for pain, I appreciate the sentiment, but it's not likely. 😛 Getting it manageable would be enough for me.

  3. I have a couple of questions. I am a Neuromuscular Massage therapist and understand about Myofascial pain syndrome as well as Fibromyalgia. First do you drink diet sodas or use artificial sweeteners at all? They can cause pain in the muscles and joints. Second have you tried working with a massage therapist? Trigger points can be worked out that are causing referred pain. I have worked with this a lot and had great results. It is just finding the right massage therapist that knows how to do this. They can also help loosen the fascia but it can be quite uncomfortable but feel much better later. If you find one working out of a Chiropractor's office sometimes they even take insurance. I personally used to have a lot of referred pain and couldn't find a massage therapist that did the kind of work that I do. I stumbled on a solution for myself quite by accident. I was attending a week long workshop that we danced for fifteen minutes a couple of times a day as part of letting go and opening to the experiences. I began to notice that my shoulder was starting to feel better. Our bodies are meant to move and when we don't the fascia laying under the skin, around the muscles and around every organ can become tight. When that happens it causes pain. Movement can loosen things up again. I do caution not to move more than you can handle and never to cause yourself more pain. I hope you have found this helpful and if you have any questions that I can answer I gladly will.Peace,Morgan

  4. Hi Morgan! No, I rarely drink soda–maybe once every few weeks or so, usually when I'm out to supper somewhere or mixing it with another drink. I don't use any artificial sweeteners, either.I've heard that about massage therapists… unfortunately I haven't been able to make that happen yet! If I could find one covered under my provincial healthcare, I'd be all set. I have a doctor's appointment in September and I might mention it to him to see if he could get me referred. Physiotherapy was previously suggested but it wasn't covered under insurance, so like the bad little patient I am I never ended up going.If I do manage to get to a massage therapist, I'll let you know if it works. 🙂 In the meantime I try to stay relatively active.

  5. I would suggest actually moving to music for five to fifteen minutes once a day to three times a day (as much as you can handle). Try that for a week and see if there is any difference. As you are moving, set the intention of shaking things up and moving things out of your body, then setting the intention that you feel healthy and strong. Start with a slower song then building to faster songs, always beginning with a slower song then medium fast and ending with a slower song. Choosing music that inspires you is an added bonus.

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