Monday, June 06, 2011

Fibro Bites the Big One

I got a tweet today with a link to an article about Fibromyalgia.  The article lists the 60 symptoms that are associated with Fibro.  Let me say it again-- 60 symptoms.  I think it's pretty rare for someone to have all 60, but most people with Fibro have more than one off the list.  We often have many of the symptoms on this list, although the exact combo that we're experiencing at any one moment will shift.

You should take a look at the list.  Some of it is irritating or just unpleasant.  A few are downright scary.  Many of us have more than one condition-- I have both Fibro and Crohn's Disease-- so it's a little hard to know what is causing what.  For example, I have problems with hemorrhoids and everything under the Abdominal & Digestive section of the list.  So when I tick off symptoms on the list, I don't even count those. And some of them are just... weird.  Like "craving for carbohydrate and chocolate".  Dude.  I'm female.  Do any of you know a woman who doesn't crave pasta and chocolate?  So I don't count that one, either.

These are the 30 symptoms that I experience on a regular basis that I attribute to Fibromyalgia:

  • delayed reaction to physical exertion or stressful events
  • sweats
  • headaches
  • pain
  • morning stiffness
  • muscle twitches
  • runny nose
  • post nasal drip
  • earaches
  • ringing ears (tinnitus)
  • light and/or broken sleep patterns with unrefreshing sleep
  • fatigue
  • sleep starts
  • teeth grinding
  • menstrual problems
  • language impairments
  • short term memory impairment
  • confusion
  • trouble concentrating
  • sensitivity to odors
  • sensitivity to light
  • sensitivity to noise
  • night driving difficulty
  • sensory overload
  • depression
  • anxiety
  • unaccountable irritability (although I think I'm perfectly justified in feeling irritable)
  • bruising or scarring easily
  • hair loss
  • tissue overgrowth (specifically ingrown hairs and splitting cuticles)
I don't deal with every one of these symptoms all the time, but I do experience every single one of them at some point within a four to six week period.  Any unusual exertion or stress increases the number and intensity of symptoms.  And a biggie for me-- tenderness-- isn't even on the list.  It's pretty common that I have to dump the cat off my lap because it hurts to much for him to sit/stand on me.  Sometimes my mom will reach out and pat me as she walks by, and I'll yelp from the pain.  A pat on the arm or the leg shouldn't make you hurt like that.

No one should have to live with all of this.  But there are so few answers.  So little is understood about this disease.  Part of the problem is that Fibromyalgia research is woefully underfunded.  According to this article, the government set aside $12 million dollars for Fibro research for 2011.  That's nothing, a very small drop in a very large bucket.  It's no wonder we don't know what causes it, and the few medications we have to treat it are only marginally effective at best.

If you find all of this as unacceptable as I do, write to your Congressman.  Write to your Senator.  Let them know that at least 6 million people in this country suffer (and I do mean suffer-- often silently, because many people, even doctors, don't "get" this disease) from Fibromyalgia.  We need help.  We need reasonable research funding, effective treatments, awareness, support.  We need a light at the end of the tunnel, because let me tell you folks, there are days when it feels like the walls are closing in.  We need more research, and we need it NOW.

4 comments:

  1. $12 million? That is crap. This is the sort of thing I get really mad about...for example imagine the $$$$ that went into researching viagra/cialis/etc. for all those old white guys whose winkies stopped working cause THAT is just so important. ugh!

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  2. What Lora said. Great post today, and glad to "see" you!
    I want so badly to make you "all better" Sweetie... sending healing, from me to you. Oh, and some letters to those people in Washington too.
    Julie

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  3. According to this article in The Atlantic, the F-35 fighter plane, the latest and greatest in killing machines, costs $90 million a pop. The government is planning to buy 2,443 of them. What if we went crazy and bought 2,000 of them instead? That's still a crap load of killing power, and we could take the $39 billion+ in savings and put it toward friendlier things. Like say education, medical research, or even reasonable care for veterans. (We can spend the money to get them blown up, but we're not so good with taking care of them once they get home.)

    http://www.theatlantic.com/national/archive/2011/03/the-f-35-a-weapon-that-costs-more-than-australia/72454/

    Thanks for the healing energy, Julie! I'm going to try to be better about posting. No guarantees, but I'll try!

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  4. I've finally accepted that I've got fibro on top of everything else, and I'm still not happy about it. What a sucky Dx. Have you seen patientslikeme.com? I joined a while back, haven't been good about charting regularly, but it's got great resources for research, sharing with the fibro and other communities, as well as awesome charting tools.

    Air hugs!

    PS - my captcha was HONTERS... nice@

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Thanks for taking the time to read and comment. I appreciate it!