Strange Experiences with Fibromyalgia

I’ve been offline the last couple weeks recovering from surgery, during which time I’ve come to some interesting conclusions about my fibromyalgia.

Background

I first showed symptoms when I was about 12, when the pain was literally crippling. While I got back on my feet, I spent years moving as little as possible. No sports, no days at the mall, no gym class, and arranging activities to streamline the amount of physical effort needed.

The correct diagnosis didn’t come until I was 18 or 19. At the time, the diagnosis required two things: pain in all four quadrants of the body, and a variety of other conditions such as multiple sclerosis having been ruled out. In short, it meant, “We believe you’re not making it up, but we have no idea what’s wrong.”

Fibromyalgia is most known for causing muscle pain and weakness, but there are a variety of other symptoms, including concentration issues, depression, irritable bowel, sleep disruption (which is likely also a cause of symptoms), fatigue, sensitivity to sounds or light, drug intolerances and muscle spasms.

For me, the spasms became so bad I feared I would drop out of college. Periodic back spasms looked like I was having a seizure, and an increasingly frequent spasm in my left arm rendered it unusable and tolerably painful. Just try twitching an arm for a few minutes and I think you’ll know what I mean. But my doctor found me proper medication, which I’ve now taken for more twenty years. With the diagnosis, we also switched from avoiding activity to encouraging it as possible.

Complexity of Pain

Small injuries can cause me extreme pain, particularly in the short-term. I warn my friends that if I injure myself, they should give me 20 seconds to let my brain reset, because when I tell them I am OK they don’t believe me because my face is grimacing so much.

YOU MAY LIKE:  Trek 100 for Childhood Cancer Research

I like to think that when my nerves and brain try communicating, one of them is speaking Esperanto. The brain gets a signal and panics, but after several seconds it starts sorting out the strange language of my nerves and realizes that what it thought might be internal injury might actually just be a great big ouchy.

Seriously, give my brain 20 seconds to chill out. Unless, of course, I say otherwise.

It’s difficult to describe painful sensations. I’ll be prompted with such options as “cramping,” “achy,” “stabbing” and “dull.” All I can often say is “it hurts.” “Stabbing” I understand. (It’s also an indication of actual injury. Fibro pain is more generalized.) But the others? I generally haven’t the faintest idea how they differ. Drives the nurses nuts.

Ignoring Pain

Out of the blue, friends have suddenly asked, “Are you OK?” I have no idea what they’re talking about. I feel absolutely fine. But, apparently, my face had just screwed up as if in pain. I can only guess my subconscious is reacting while my consciousness rejects it. I’m not trying to be a tough girl. I honestly don’t feel it.

A couple days ago I was recovering on my couch reflecting how good I was actually feeling…until my eyes started tearing up, and I realized it was from pain. It was only at that point I could feel it. That’s the most dramatic example of the phenomenon I’ve experienced.

That 1-10 Pain Scale

I’ve given up trying to interpret it. I’ve asked for guidelines, and I’ve been told that each person’s view is different and it’s about the individual’s toleration. OK, I kind of get that. But 4-6 is “moderate pain.” 8-10 is “severe pain.” My bottle of Percoset says “for moderate to severe pain.” Really, super narcotics for a 5?  (As a note, the rules have actually changed over time.  At first she wanted me to be fairly medicated to keep ahead of the pain.  Now, two weeks out, she would like me to wait until a 6 or 7 before taking it.)

YOU MAY LIKE:  Where to more easily find me

To me, a 5 is “boy this sucks, but I just need to tough this out, as I did have surgery and all.” Of course, the fact I had surgery is exactly why they gave me Percoset. But my menstrual cramps were sometimes a 7. Then again, my surgery was a hysterectomy, so maybe my scale is screwy on acceptable menstrual pain.

We knew I was staying the night at the hospital. I ended up staying an extra night. My pain was averaging a 5 with bouts of up to 9. (I’ve never stated “10,” as I always figure there is something worse, which is also probably a terrible scale) I really DID want to stay that extra day, but I was afraid too many 8s and 9s were going to make me sound drug-seeking, so I periodically kept downplaying it.

I really shouldn’t have to think that hard about the situation. That was just silly. I blame it on the narcotics. IV Dilauded is my new best friend.

For me, the average fibro pain is probably a 2 or 3, when I pay attention to it, but on my bad days it can be a 5. In the case of surgery, apparently 5 equals Percoset, but on a day-to-day basis I don’t get any pain medication at all. Are those pains really of a similar magnitude?

Maybe. I am miserable on those level 5 days, and the fact is most painkillers do not affect fibro pain. This further complicates medication because I frequently forget to take regular painkillers for actual injuries because I am so used to them not working on fibro pain. I have actually gone to the doctor and had him ask me what I have taken for something, and I have embarrassingly admitted I forgot to take anything.

4 comments

  • Lynn Cox

    I learned a bit about fibromyalgia today.

  • Dani

    I’m sorry to hear about your fibromyalgia, Cassie. I have a couple friends with that condition and their experiences are very similar to yours — a dull pain that they mostly stop noticing unless they think about it to hideous pain that just lays them in bed and keeps them from doing anything. I’ll keep good thoughts and bright energy coming your way! -D

    • Nowadays it is largely under control. I have my bad days, but I also bike 100km at a time in summer. I’ve gotten a long way in 25 years. But it does do all sorts of weird things when it comes to my perception of pain.

  • Oh my, I know about having trouble with the pain scale. I have to literally use it every day on people, I’m a physical therapist, But having rheumatoid arthritis, I know how difficult it is to interpret chronic pain. My pain is in two categories – Pain I can ignore, and pain I can’t ignore. There is no in-between. No numbers, percentages or otherwise qualifying factors. It hurts or it doesn’t. Mine is pretty well controlled these days too, until it isn’t. The fatigue sucks at times, like now. I have concentration issues too but try to hide it as well as I can. I walk almost every day in good weather, and up until a few months ago was working out at least 3x a week, workouts have been a little more sporadic lately d/t fatigue and the crappy winter we’ve had. I will get back on schedule though. I have to. Best of luck – btw, found your blog because of the steampunk article – can’t wait to work on my jackets!!

Leave a Reply

Your email address will not be published. Required fields are marked *