When a person with FM is "complaining" (as we are known to do often) about pain, it is not for attention. It is a call for help, for motivation and inspiration. If a woman has FM, she spends all day trying to motivate herself to move through the pain. Awful tension headache? Body fatigue? Pain pain pain? Too bad, she has things to do. Therefore,when a woman with fibro says to you something like, "I don't know why, but my body just really hurts today," she's probably looking for some sort of encouragement. First of all, she really doesn't know why. There is no injury. Second of all, it probably took A LOT of motivation for her to make it out of bed and through the morning ritual. Let her know, she's doing a great job. Especially if she's like me and the other fibro patients I know, she probably forces herself to go above and beyond her own and everyone else's expectations.
I like to remind myself that my nervous system is an asshole. A Neurological Study found that persons with FM compared to a controlled group with no pain "had more sensory findings than controls (65% vs. 25%; p<0.01) consisting of diverse abnormalities including pinprick, temperature, and vibratory sensation as well as analgesia/anesthesia." There are times when, out of nowhere, something will suddenly start to feel pain or feel like it's vibrating or just feel irritated. On a recent hike with my boyfriend, I started getting a random vibration and stinging sensation on my right foot on the outside of my big toe. It started as soon as we started walking. Really? It was extremely frustrating. I wanted to enjoy my hike and feel like "I can" and my body was trying to tell me something was wrong. Nothing was wrong. At the same time, my brain was telling me that a seam on the inside of my pants was bothering my skin...what? I just kept on, and eventually, thinking about other things helped.
The point is: If a FM patient winces, she/he is probably experiencing some random spark of pain. This is, once again, for no real reason. They are finding more and more that FM is a neurological disorder. One type of pain called allodynia is caused by mild pressure from clothing or massage. There's also paresthesias, a type of pain that comes from nerve sensations, similar to the feeling I explained above with my foot. Sometimes it's a strange throbbing, or a vibration, or an itch, sometimes, it feels like a stab. All of those random sensations and pains can be extremely frustrating. I find myself asking "WHY!?" a lot. It's like being poked constantly--lots of anxiety ensues. Here is another link that talks about the types of FM pain.
The point of this post, though, is to highlight a recent message I received from a close friend who wanted to lend her support. I think she does a great job of empathizing while also motivating and pointing out that, considering the constant pain, I sure do a lot.
Here is her message:
"From what you were describing and taking from talks
we've had previously it's a daily struggle for you to get what you need
and want done, and that's really difficult to deal with. I don't know
exactly what you're going through, but I've battled bouts of depression,
OCD and anxiety since I was 15 and I have a feeling that the experience
is similar; At first you think you're just being pathetic and that you
just need to motivate yourself into being ok and productive but when you
fail to do that even sometimes it feels like all the things you do
right don't even matter. And once you find a medical name for what
you're experiencing it's both a relief and a let down, because while you
know you aren't the only one going through what you're going through it
feels like something you should just be able to work through and
everything should just fall in place. That's sort of the sense I was
getting from your blog anyway, and it's certainly something I go through
everyday. I'm sorry you're in pain and tired all the time, it sounds
terrible. I just wanna offer you what little understanding I think I
may have gathered and to let you know that you're inspiring. You do so
much more than I do and you're listless and in pain while you're doing
it, and I think that's amazing."
One more thing...
I'd like to add a link to an article about foods that may cause pain (chronic-pain causing foods ). I believe that these foods do cause more inflammation. I have more energy and my body does not hurt as much when I avoid sugar, gluten, and dairy. I'm not a stickler about nightshades although I don't eat them often anyways. When Phillip and I have cheat days and munch on pasta smothered with cheese...I usually feel like crap shortly after. So, I do highly recommend diet change :) it seems like a lot of work, but eventually you just don't crave the things that make you feel like crap.
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