Thursday, March 20, 2014


Diary: I Have Fibromyalgia

Ah, the things most people don't know about me...

I have fibromyalgia.

Not officially diagnosed, but hear me out- this is something that has been going on for 5+ years now. I was 21-23 when I started showing symptoms, and it progressed steadily from there. (I am now 28.)

In the beginning, I saw many doctors, and all of them were quick to prescribe me muscle relaxers, tell me I needed a massage, and sent me on my way. I had extreme knots in the muscles around my right shoulder blade, often accompanied with a searing pain that felt like a knife being thrust into my back, and twisted. I had so many tests done, to find nothing.

I quickly grew tired of hearing, "You're fine, you just need a massage." The muscle relaxers and pain medications helped for a while, but they never really helped much at all. The pain was dulled for a short time, but never went away. And I'd long since lost count of how many doctors I'd seen.

The thing with fibromyalgia is, there is no cure. You can only treat the symptoms. (Check out this story about a man's otherwise healthy wife being debilitated for 9 years. This is an extreme case, but all too familiar.)

I gave up on the idiot doctors when my medicaid ran out. I also stopped touring in order to heal, and start over. But I never really got better. I actually started to lose faith in myself. Again.

Fast forward to today...

The initial symptoms still remain, and I've gained a few others over time-

1) Constant tightness and dull pain in the muscles around right shoulder blade area. Searing pain when it flares up.
2) Lately it's been starting to occur on the left side as well.
3) Can't sleep many nights due to pain. When I finally start to relax, I often experience restless limbs (usually arms). This keeps me up until early morning.
4) Every few days or so, the pain is so excruciating I vomit. Multiple times.
5) During flare-ups, even the slightest pressure on certain trigger points makes my knees buckle, and will drop me to the floor.
6) Constant pain, lack of sleep, and feelings of helplessness lead to depressive states.

Those are the most common.

I don't tell many people about my problems for several reasons, the main one being I don't want pity, and most people won't understand anyway.

Honestly, it pains me to admit I have this. I am a very strong-willed person, and I hate the idea of being a slave to my body, my own humanity.. I hate feelings of weakness.

The upside to not being medicated (I hear about so many FM sufferers having to take dangerous drug cocktails and living as zombies) is I can still go outside and get some exercise, weather pending of course. Taking long walks really seems to help. I try to be as active as I can. It makes me feel so much better. (FYI, this is why I get so angry about lazy people- I'm in agony half the time, and I still work out! So STFU already, bitches.)

Meditation helps to an extent. I can easily gain control and relax those hard-to-reach muscles, but only for a short while. And when it's so bad I start puking, all of that goes out the window. Those are often the days I hadn't been able to sleep the night before, and my nerves are shot.

I switched to a vegetarian diet almost 4 years ago now, and I feel better overall, but it didn't help my problem.

This is something I live with every single day, some days worse than others.

For example...

Last night, I fell asleep relatively early- about 11pm, and slept until about 1am. I got up and went to the bathroom (I'd been drinking Lime-A-Ritas to help dull the pain), and went back to bed. (I have to keep my head propped on an extra blanket on top of my pillow to both stretch and support my shoulder.) Although I was exhausted, and had taken Tylenol PM to knock myself out, I had what I call the 'full body twitchies' - Restless Limb Syndrome. I spent this time, exhausted and miserable, writing lyrics in the dark to keep my hands busy, and my arms from flailing violently against my will. And eventually, I finally passed out some time after 7am, and slept until noon-ish. Today I feel absolutely terrible, and completely drained, and refuse to do anything more physically demanding than taking a hot shower. Fuck the world.

This is my life, and now I can hardly remember what it was like to not feel this pain. I hate it so much, but although it is debilitating, it also teaches me about patience and inner strength every single day. It keeps me grounded, and reminds me that I am, indeed, only human.

I hope one day soon a cure is found that won't turn me into a drug addict or make me grow man hair.

Do you have fibromyalgia, or know of someone who does?

1 comment:

  1. The PM products for sleep give me restless leg syndrome. Just a thought. I hope you find something else that helps


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