Fibromyalgia Information

This is a short summary of introductory information for those new to Fibromyalgia or FM.  I couldn’t possibly post everything useful about FM, but I hope these suggestions might help you get started if you or a loved one has it.

I’m not a doctor, and I’m not dispensing any medical advice.  These are some resources that I’ve found useful.  It is your responsibility to do your own research and consult with your medical providers.  All I can do is make some suggestions.

I believe that many people benefit from a combination of mainstream and alternative treatments.  Unfortunately, what works for one person often causes awful reactions in another.  For example, I had a horrible reaction to Cymbalta but Savella (a closely related drug) is helpful.  Some people have found relief with acupuncture; my venture into that was awful.  I do, however, see a message therapist regularly.

I’m not interested in posting “miracle cures” such as the miracle juice of the month.  If you or a family member have FM, you’ll meet many people who have a great cure to sell you.  Be skeptical and do your research.  As with any serious, incurable illness, there are many people who are eager to fleece you and turn a profit from your distress.

My favorite publication is from Fibromyalgia Network; they publish a quarterly newsletter. Most doctors don’t have time to keep up with everything in FM research.  That’s true in my case, at least, because I see an internist.  While FM technically falls under the expertise of rheumatologists , that doesn’t mean that you’ll find a specialist in your area willing to treat you.  Some people find help from pain specialists, but shop around as you would for any new doctor.  Some FM patients find great relief that way, and others end up with chronic pain specialists who don’t believe in FM. UPDATED 4 Marcy 2013: I have just received the sad news that health issues are forcing the editor to close this valuable network. There may be a continued presence on the website and/or Facebook. Details are posted at their closing announcement.

I don’t spend as much time online at FM sites as I use to, but here are some good ones:

But You Don’t Look Sick is the home of the Spoon Theory that I blogged about.  It has lots of other resources; check it out.

I’m also fond of Invisible Disabilities.  It’s not specific to FM, but I think it’s still helpful.  How many of us have heard how great we look when we feel like we’re about to fall over?

What on Earth is Fibro has a list of links on her site, including some specific to the United Kingdom.  You can find them at her “what is fibromyalgia page.”

Chris Dean has a long list at her blog, Life Your Way.  Definitely worth checking it out; I’m still working my way through it.

Here’s an interesting site about ME/CFS (formerly known as chronic fatigue syndrome). The FM specialist I see believes I have both, which is supposedly common. I’ll stop there because some people get very upset about the idea that maybe ME is somehow related to FM. I’m not taking a stand on that because I really don’t know. I just know that having either diagnosis is bad. This blogger also has a long list of other sites to visit. No Poster Girl also has a page on Facebook in addition to the blog.

Here are some of my favorite introductory books on the subject:

The Complete Idiot’s Guide to Fibromyalgia is a great introductory book for the newly diagnosed and their families.  I’m not as fond of the author’s organization, the National Fibromyalgia Association (NFA).  Since Lyrica became the first FDA approved drug for treating FM, the NFA has become closely associated with the pharmaceutical company that makes Lyrica.  I’m concerned that the NFA is too focused on promoting Lyrica when it is only one of many treatment options.  The NFA also publishes a quarterly magazine, Fibromyalgia AWARE.  It’s much prettier than the one put out by the Fibromyalgia Network, but I haven’t found the articles to be as informative.

I also like Fibromyalgia:  The First Year.  When I got sick, lots went wrong beyond “just” fibromyalgia.  I call them piggy back diseases.  This book goes into many of these bonus medical problems.  One chapter is devoted to a particular miracle cure; I do not recommend that chapter.  Despite the hyping of their miracle cure, this is the only book I’ve seen that summarizes all the extra illnesses commonly associated with FM.

A more specialized but very useful book is the Fibromyalgia and Chronic Myofascial Pain: A Survival Manual.  You should hold off until you know what myofascial pain is.  But if you think this condition applies to you, this book will be very helpful.

And don’t forget support groups.  There are yahoo groups for fibromyalgia support.  The one I liked recently closed.  But look around; there are many available.  Also look for local support groups.  The Arthritis Foundation runs a very good one in my area.  The people who will understand best are people with FM and, often, those who have family members with FM.