Know Fibro

A series of interviews with deviants whose lives are affected by Fibromyalgia

In an effort to spread awareness and the seriousness of Fibromyalgia, ^opioid agreed to share her personal story and answer a few questions so that we all may all gain some insight.


When were you diagnosed with Fibro?

It's kind of a complicated story for me. Fibromyalgia is not my main diagnosis, but is a result of a long term chronic infection off something called Lyme disease.

I was undiagnosed for about 10 years, and eventually came to a point with my immune system where it began to attack itself from time to time. My doctor diagnosed me via the standard pressure points, pain, fatigue, and hard knots of tissue in my shoulders.

I was diagnosed with fibromyalgia before Lyme disease, probably in early 2004, and then I switched doctors and she agreed with the fibro diagnosis but sent in tests for Lyme, as she was familiar with the way it mimics as well as induces these kind of disorders.


When you were diagnosed, what were your feelings? Did you know about Fibromyalgia prior to it?

I knew about fibro before my diagnosis, as I had been sick for so long, tested for so many things, and done so much research for answers...or straws to grasp at and new things to try. I'm not sure I felt much of anything toward the fibro diagnosis. It made sense. And it was relieving to have a diagnosis, but I was uncomfortable with the conduct of the diagnosing rheumatologist. His card said that he specialized in Lyme and Fibromyalgia, but he didn't even test me for Lyme. I found a new doctor--in a way my FM diagnosis led to me finding my current physician, who has helped me come a long way.


What has maintaining it been like for you? What are your days like?

Day to day it varies. When I went into remission from the Lyme infection I still experienced the fatigue and pain of fibromyalgia, so I was treated with SSRIs and lyrica, while it was in its experimental phase as a treatment for fibro.

It's now officially prescribed for that, as you may have seen on its commercials now that was a good feeling. The medication can make you feel a bit fish-bowly and fuzzy as well, but it definitely helps. I was able to live productively and plan my move to NYC once the Lyme was in remission and the fibro was controlled symptomatically.



What are the worst things about having Fibromyalgia?

The fatigue. When it hurts to move, to get out of bed. The worst thing for me is that it seems it could have been prevented if my doctors had only tried to rule out Lyme disease...then they may have found it before it triggered any fibro symptoms outside of Lyme's mimicry.



What is the support like from friends and family?

My mother is loving, worried all the time, overbearing, and supportive. All at once. She's a mom. My friends are used to me by now. I've been ill so long, and I'm so much better since diagnosis and treatment than I was in high school that they're all just happy to see me functioning again.

I'm also lucky to have a very knowledgable and supportive partner in Tony. His mother has fibromyalgia, and much more severely than I do, and has had it his whole life. So he knows the pit falls, he knows to remind me of certain things and not to get caught up in statistics to live my life. My actual life. The good days are worth remembering, you know? You have to always remember that, especially on bad days. Good days come. The good and bad are equally valuable because you live each day to your fullest capacity if you have the right attitude about it.


Was there any time when you realized how different your life would be because of Fibro?

No. Not because it wouldn't be different--it is--but because I was sick with this mystery illness so long, getting worse and worse...the only difference in my life was that now I could do something about it, learn how to take care of myself and such.


What advice do you have to give to people who have found out they have Fibromyalgia?

There's no reason you can't life a life with fibro, it just has to be in moderation when it comes to exertion. It's so important to listen to your body. The more you rest, listen, and care for yourself the more good days you will have.



Thank you so much, ^opioid, for sharing your experiences with us!

How you can help

Join us in spreading the awareness by checking out this article to see what you can do to help out: [link]