Fibromyalgia Awareness Day

This is my first Fibro Day as a person with fibromyalgia. I’m still coming to terms with it myself, so I don’t know what I have to contribute to the community (either the fibro community or the healthy community).

I admit in the past, I had written fibromyalgia off as some kind of fake illness. I had met a man once who claimed to have it, but he wasn’t a very trustworthy person, so I wondered about his illness. It wasn’t for a couple of years that I worked in “Big Pharma” and heard about a new drug for fibromyalgia. The drug ended up being Lyrica, and there was a lot of skepticism out there about its application. It seemed like fibromyalgia had been previously a vague illness, a diagnosis of exclusion, but it now had some specific diagnostic criteria that coincidentally matched up with some of Lyrica’s indications. It seemed like a convenient money-making coincidence.

I had never known anyone with fibromyalgia at the time. I met a wonderful friend who was in the process of obtaining a diagnosis, and really sympathized with her fight. She was tired and in pain, and all the tests came out negative. She finally saw a rheumatologist who diagnosed her with fibromyalgia. I started reading up on it in greater detail to understand more about what she was going through. I read The Spoon Theory and tried to understand. At that time I was recovering from mono and knew all too well what it was like to be exhausted, but I had not talked to anyone about it. I just knew I had to keep going to work, keep earning a paycheck, and couldn’t complain about it. Since I didn’t have a “visible” problem, I didn’t think I had the right to talk about it.

Fast forward a couple years, and things started to get worse. It was hard to ignore when my body ached even more, and when I’d conk out after work or on my lunch break. When I realised I had the classic tender points, I was kind of in shock. I was a person with fibromyalgia.

Even worse: I had a disease I once believed was imaginary.

I’ve done so much reading on the subject. I don’t advocate as much as I should for myself. I’ve learned a lot, and every day I learn more about what helps and hurts me. I feel like I’ve come a long way, but have so much longer to go. I feel like I still judge myself and feel guilty about my abilities and disabilities, and I’m not clear about my needs. I try so hard to be helpful and cognizant of others’ needs, I just need to do the same for myself!

I think I will make a plan for the next year: I will educate others about fibromyalgia when it’s appropriate, I will advocate for myself, and I will report back on Fibromyalgia Awareness Day 2010 about how things have changed. I challenge you to do the same. :)

For more info:
Wikipedia on Fibromyalgia
Mayo Clinic on Fibromyalgia
WebMD on Fibromyalgia
National Institutes of Health/MedlinePlus on Fibromyalgia
National Fibromyalgia Association

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5 Responses to “Fibromyalgia Awareness Day”

  1. Celestial Says:

    Very nice. I’d love to join this challenge with you.

  2. Fibromyalgia Haven Says:

    Give this a try….

    http://fibrohaven.wordpress.com/2009/06/08/gluten-intolerance-the-culprit-behind-many-chronic-illnesses/

    • fibrofatty Says:

      Fibrohaven, thanks for the link. I’ve heard that for some people fibromyalgia can be aggravated by food allergies. For me, dairy causes IBS symptoms (along with chronic mucous and asthma problems!).

      I’m glad you found something that works for you!

  3. 1bizzybee Says:

    Have you tried any natural therapies? If so, what have you tried and what worked best?

    • fibrofatty Says:

      Hi there.

      I have not tried any natural therapies (except one, which I am going to post about very shortly!). I’m leery of herbal supplements because they’re uncontrolled, and it’s impossible to know if it was grown under safe conditions, or even what part of the plant (or how much) is in the supplement. Also, they really haven’t been proven to be effective (with a few irrelevant exceptions).

      I know some fibro folks have had great luck with supplements, but it’s just not something that’d be good for me.

      Something I’d consider natural but may not be what you were looking for is vitamin D. my D levels are low, which may contribute to my pain levels, and so I take at least 7000 IU vitamin D per week, per my doctor. I take D2 (which is vegan; the other form of vitamin D is D3 and is derived from animals). I also sometimes take B12, which I hear can help with sleep and pain levels, but also is just a nutritional safeguard since I’m vegan.

      Hope this helps! And stay tuned… a new post is coming :)

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