The Pain

Everyone’s FM pain is different, as I understand it anyway. I find it hard to relate my pain to others as it is not relatable. We have all stubbed our toe at some point, so most people can relate to that. Not very many people have had a botched spinal tap, so it’s a little harder to relate to. FM is even less common, and believe it or not, it can be worse than a botched spinal tap. I’ve had both. Talk about luck!

I’ve never had a pain like this in my life, so it doesn’t fit in any particular category. It’s not a stabbing, burning, aching, or anything most people can identify with. It’s an electrical “buzzing” that envelopes my entire body with emphasis on certain areas, such as my shoulders, head, back and legs. Icky is one way to explain it, but for the most part it is incomprehensible.

Something that comes close to the pain I have is when I was about 7 years old I crossed the street at our bus stop, my mother yelled and I turned around and found myself looking at the hood of a box truck. I felt terror and a paralyzing pain that is the only thing I could ever compare it to, yet it is still not close enough to be an analog. This leads me to believe that it could be a malfunction of the HPA Axis, your fight or flight survival circuit.

Another theory I have is that it is a malfunction of the body’s pain sensory system. A sensation of pain is perceived when there is no physical cause. A bit like a smoke detector going off because of a candle, it can over react alarmingly. For me, the triggers are like flood gates, and once it starts all you can do is get comfortable and ride out the worst of it. The goal should be to identify and minimize the triggers. If discussing politics gets your pain rolling, as it does for me, then cutting back or stopping all together might be a good way to minimize your pain.

To give another idea of the level of pain we are talking about, I had a UPPP as an adult. It is for sleep apnea where they remove the tonsils, uvula, and other tissues from your throat. It is known that having your tonsils removed as an adult is excruciating. Some have said, (and I assume by women as only they could know) that the pain is worse than childbirth, some say far worse. My doctor warned me that it would be the worst pain I ever felt. I doubted it and told him so, reminding him of my FM. He got this look on his face, the look that says, “OK, I warned you…”

I regularly have pain of 8-9 on a pain scale of 10. The worst pain from that procedure was a 6, and that is when it radiated to my ears. Other than that it never got over a 4 from the surgery. I stopped the morphine drip after an hour. I had bacon and eggs and toast as soon as I was allowed to eat. My doctor was stupefied to say the least.

After you have FM, serious pain is somehow more manageable, unless the pain is aggravating your FM, in which case you are in hell. Trying to explain that a jarring car ride or an argument can cause more pain than surgery is a very difficult concept to wrap your own brain around, so trying to explain it to others is just short of a lost cause.