Trying to Explain Fibromyalgia to a Medical Professional Is Really Impossible

I have lived with fibromyalgia [FM] for 30 years and have been met with the same disrespectful, dismissive reaction from medical professionals to anything involving FM more times than I can count.

Photo by Martin Brosy on Unsplash

I went to see an occuloplastic surgeon a couple of weeks ago. His assistant explained that they did eyelid surgery. That’s it. They did any kind of medically necessary eyelid surgery, but also eye lifts and other eye lid cosmetic surgery. I had two cysts on the inner corner of my left eye, one above the other. I had had them for many years and was finally ready to get them removed.

I filled out an eight page packet of health issues, medications, surgeries, etc. I hate filling these things out but suffered through it. Finally I was put in a room that looked like a regular optometrist’s setup with the strange chair, projected letters on the wall, and that big thing they put in front of your eyes and ask you, “Which is better, one… or two…?” By the way, I never know what the right answer is. I just guess.

The doctor came in. He was very friendly, personable, and looked like he worked out. He looked at my eye, read my new chart and we discussed a few things on it. As usual, he didn’t comment on my fibromyalgia. For some reason, doctors never do.

Do they think they understand fibromyalgia or do they think it doesn’t matter? I think they don’t think of fibromyalgia as any big deal. More of a, “So you have fibromyalgia? OK. Now let’s take a look at these x-rays.”

You would think after all these years of medical research, public information, new treatment medications, and education, doctors would understand that FM always plays a part in each person’s other health issues. The first thing they should say is, “Tell me about your fibromyalgia.” They don’t get it at all.

So the doctor poked around a tray his assistant had prepared for him. I saw the syringe with the anesthetic. It had a tiny needle and I thought, this shouldn’t be much worse than going to the dentist.

I tilted my head back. He said, “You’re going to feel a little pinch and then some burning as the anesthetic goes in. But it shouldn’t be too bad.”

I felt the “pinch” if that’s what you want to call it. I would have used different words to describe it like, “It’s going to feel like I have a pair of scissors and I’m cutting through your eyelid,” or “It’s going to feel like I’ve grabbed your eyelid with a pair of pliers.”

And then came the burn. OMG!

I found myself raising my voice — not screaming — to say, “Stop! Stop! Stop! Oh, please stop right now! No, no, no.”

He pulled the needle out and gave me a puzzled look. Kind of a “who are you and what is your problem?” look.

“Just give me thirty seconds to breathe. I was not expecting this to hurt so much.”

“I have to say, I have never seen this kind of response,” he said. “Most people say it’s no big deal. This is a disproportionate response. What’s going on?”

And I realized, yet again, that I was dealing with a doctor who had no idea what having fibromyalgia means. I briefly wondered if it was worth it to go into the details or blame it on something else.

He was a really nice man and kind. I could tell he was honestly concerned at my response. I decided to keep it simple. So I took a deep breath and said,

“It’s the fibromyalgia. I am always in pain, and I have a very low threshold for additional pain.”

Sounds good, but that isn’t exactly it, either, is it?

After a minute, I was emotionally prepared to deal with the pain. I have studied meditation for years and was able to put myself in my “happy place” before he started. I still felt the intensity of the pain, I just handled it better.

After he was all finished, he brought up my disproportionate and surprising reaction again. I just wanted to go home. I looked at him and said, “Yeah, well next time I will be better prepared.” Then we got out of there.

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Thanks !

Thanks for sharing this, you are awesome !

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