Spotlight: Lindsey Middlemiss

Spotlight: Lindsey Middlemiss Blog: Living with Fibromyalgia Blogging since: April 2006 Cause: FibroAction - Raising Awareness of Fibromyalgia Syndrome www.fibroaction.org - coming soon! Work: Charity director of FibroAction, awareness activist, and garden designer.

Tell us about FibroAction. Why did you start it?

FibroAction is a new UK charity dedicated to raising awareness of fibromyalgia, or fibro. Currently, we’re in the process of becoming a registered charity (the equivalent of 501(c)(3) status in the U.S.).

Fibro affects millions of people in the USA and UK, yet hardly anyone (in the UK at least) has ever heard of it and most doctors get no training. By starting a new organization, we’re able to give the disease a new focus and help raise awareness.

We wanted the name to reflect our dynamism and to move away from using the formal name fibromyalgia, which many people struggle to pronounce and spell. Since “FM” sounds like a radio station, we settled on the easy to remember “fibro.”

What are your long-term goals?

To raise awareness among fibro patients, healthcare professionals, and the general public. To put an end to the time when a doctor says, and genuinely thinks, that nothing can be done.

There’s a huge amount of knowledge available, and vast amounts of research work. We want to see faster diagnoses, effective standardized treatments – even preventative measures. We want to see the public awareness of fibro reflect the huge number of people it affects.

What research has you most excited?

I’m fascinated by how fibromyalgia syndrome affects the brain. Dr. Patrick Wood and Dr. Andrew Holman developed the dopamine theory of fibromyalgia and the use of the dopamine agonist, pramipexole (which I'm taking), for the treatment of fibro. The results they’re getting are very exciting.

Other research explores how chronic pain and high levels of stress alter the brain. This could have huge implications for understanding how fibro develops, how to treat it – even how to prevent it. Dr. Muhammad Yunus' work on central sensitization syndromes could pave the way for a new medical discipline.

Work to identify the genetic profile associated with fibro opens up possibilities for testing individuals to see if they are at risk for the disease. I think that, eventually, children with a family history of fibro will be tested and if they have the fibro genetic profile, they’ll be given treatments that prevent or slow the onset of the condition.

What’s it like to have fibromyalgia?

Kind of like having the flu, but it never goes away. It’s an indescribable world of pain, fatigue and other symptoms that don’t ever stop. That’s the worst thing – even with good treatment, you still have to deal with it every day. The impact of the condition has been known to drive people to suicide.

What made you start your blog?

To make a personal record of my journey with fibro; a way to cope on a daily basis. But as I began studying the research, and began better managing my disease, I started writing more about fibro-related research and news. In late 2007, I turned the blog into an information resource.

How does writing help you cope?

It’s extremely therapeutic, although sometimes the public nature of blogging means you can’t let it all out. But when a public issue really riles me, it’s good to deal with it in my blog.

Where do you turn for support?

My husband Simon is fantastic; very supportive of my awareness and advocacy work. I’ve also made some good friends who also have fibro. They understand in a way that no one else can.

I used to get a lot of support from Heather Van Vorous, author of IBS: The First Year and Eating for IBS. If it hadn't been for Heather, I would have never stabilized my IBS, and it would have taken even longer to get a diagnosis!

But You Don’t Look Sick has got me through many a hard day and night. I’ve made some amazing friends through the message boards there, which I’ve helped moderate for a number of years now. It's all about living life to the fullest with any disability, invisible disease, or chronic pain.

How has fibromyalgia altered your career path?

Before getting fibro I trained as a meteorologist and planned to race yachts professionally. Not surprisingly, getting fibro – and not being properly treated for some years – put an end to that.

So I left meteorology and turned to garden design – a career I love that gets me outside and let’s me work around the fibro. I’ve been studying horticulture at home for a few years, and have designed and helped implement gardens for family and friends.

Now that my fibro is much better managed, I hope to start working part time as a garden designer soon. But right now, my focus is on making FibroAction a success.

How are you promoting FibroAction?

By keeping readership to my blog up, for one. I try to post often, and commenting on related blogs and submitting entries to blog carnivals always gets me an injection of new readers. Posting on message boards and including a link to my blog helps, too.

When the upgrade is complete – any day now – we’ll be publicizing the new FibroAction site through blogs, message boards, online communities, reviews on other sites, and online ads. We’ll be sending out a newsletter to registered users, and improving our Google ranking through distributing documents to the media.

Learn more about Lindsey Middlemiss.

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