Fibromyalgia pains are hard to explain

Date:   6/28/2007 9:40:32 PM ( 17 y ago)

Realistically, the best hope I have for helping the world would be to just raise understanding of my disease. I started this blog with that in mind, but it gets boring advocating for one thing when there is a world full of problems for me to solve!! ha ha.

My new living arrangements - I moved a month ago - have given me new people to "educate" and so I am re-focused on 'how to explain Fibro' [but I set my expectations very low].

"Fibromyalgia" - thats what they call it. It has been with me for at least 25 years, from a time when nobody knew of it to where most people have heard of it but nobody still gets it. Maybe it is not even the right diagnosis for me, but thats what doctors decided to call my condition.

What happens is that when I use a body part, a muscle is involved, and that muscle acts strangely. After just a few repititions of using any muscle, it will become crampy and painfull. Later, it will bite back with what feels like an electric shock if I use a sore muscle. The longer I 'over-use' an allready sore part, the longer it takes to settle down. If I repeat too much, go too far, it will be a constant pain for weeks and months. I had back pain that lasted more than 10 years. Go too far, and instead of pain in some positions, it can stay hurting constantly [but not nearly as bad as electric shock], even when I am at rest, laying down, or sleeping. It is a strong enough pain - constantly - to distract my focus every second of every minute.

Yesterday it was my wrists - I screwed some wood together for my neighbor, and that evening I was opening the fridge and WHAM!!! - the pain hit that my wrist was just like electric shock. I can grab onto one thing and nothing, but then a small change in the angle I am holding something and it hits. I know that if I went out and finished the job today that my wrists could stay hurting like that for weeks, so I do not do it. I hate leaving project 3/4 finished... but I have too.

Anywhere. Mid-back, calves, bottoms of my feet, neck spasms, and writst and knees and hips are the worst areas for me. My calves will go into "charley horse" spasms when I wake up in the mornings, and wow does that jolt me. My feet curl up and cramp hard after driving the car for two hours. And so on.


But how do I tell people what I have? Whats wrong with me? -
I cannot just say : "I have a neurological condition where the muscles do not process energy properly and then they go into cramps and it hurts" , because the word "neurological" means "mental" to most people [but it is really just anything to do with the "nerves"].

People want a name, and when I say "Fibromyalgia" they think 'women' [80% of Fibro cases ARE women], and they remember then mindset from the 80s and 90s that "it is all in your head, you have depression".

It is hard to break old ways, especially when nothing to replace them sounds as good. Now people say: "ok, its not in their heads, but it isn't really an injury that causes the pain either, so it must be "all in their heads".

I wanted to tell my neighbors that I cannot finish my little project there today, and show them how my wrists acted up, to explain what happens, so they will understand why I cannot do some things, sometimes.

I managed to talk about it with them a little, but an hour later they wanted my help but were concerned that I would be hurt if I tried to hold something, and so they asked me: "so, you have weak wrists, right?" .

:( - NO, thats not even close.... "my wrists are strong, they just hurt"

Ya ya, ok. I give up. You have to have it to understand.




 

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