Wednesday, July 21, 2010

Patients Like Me

If you have fibromyalgia as I have, it can be very confusing. There are many mysterious symptoms and even one's thinking can be affected. (They call this "fibro fog". It is also called "cognitive function")
Wouldn't it be nice if you could get together with people who had the same thing and compare notes? Do you ever wonder what other treatments are out there?
Now you can find out on this site. There is even a search thing on it so you can find out which ones are in your state for example, or who has the same disease or syndrome (fibro is sometimes called a syndrome, don't know why) as you do.
I've felt like I've been lied to for instance. When I first was diagnosed by my doctor, he told me fibromyalgia is not "progressive". What this means is that it doesn't get any worse. (It also doesn't get any better.) My fibromyalgia has in fact gotten a great deal worse. I was curious if other people were experiencing such a great increase in pain and I found this site.
It is said that some doctors report a whooping 10 % of patients they see have fibromyalgia. Often they are not believed to suffer any pain at all by loved ones or even by their own doctors. There is no test for fibromyalgia, it's just a bunch of symptoms with no discernible cause. It's maddening to hear people tell me it's all in my mind. If only people could be me for a minute, they'd feel some pain alright. Fibromyalgia has become a sort of "blanket" diagnosis for anyone who comes in with aches & pains and no known cause. It's easy to write it off as such and prescribe anti-depressants because often depression causes aches and pains just like fibromyalgia.
Recent research suggests that fibromyalgia and depression are not related after all, and they've found people not depressed who have it. However I think it likely that someone who suffers such pain might very well become depressed.
I remember when I got it. I lay on the bed and every joint in my body was pounding with a painful rhythm. In those early days I didn't get headaches like I do now, I merely thought it was the onset of arthritis.
There is a funny story I have to tell. I was amused to read that striped clothing or anything with stripes make many fibromyalgia patients seasick. It causes the eyes to sort of mess up and it was one of the things I noticed. I told my hubby that and he laughed and laughed at me, but I was dead serious. There is a long list of fibro symptoms that can mess with your head and make you think your brain is rotting away up there. The hair loss I found hard, as I was very vain about my hair. Still I would go bald is that is what it took to get rid of the pain. Pain is a terrible tyrant, taking away humor and any enjoyment and making one quite stupid and irritable. Irritability and a short temper are what I have, so I turn to silence. Saying nothing insures I will not say something I am sorry for later.
Pain is my mistress and I have to dance to her tune. She rules my life. One day maybe research will find a cure. I hope so.

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