Lesson 8: Finding Resources on Fibro
Muzzling Fear, Looking for Hope
The only way to deal with the fears generated by our physical problems is to stay educated. Get some good books (your text is a great start) and when in doubt, look things up. Find a support group and compare notes. Talk to your doctor if you feel good about your overall communication. But don't stop looking for answers.
A good place to keep up with the latest research is through the Fibromyalgia Network. You can read short snippets about what's new on their web page, but I strongly advise you to subscribe to their newsletter, which will keep you up to date without any extra effort on your part. As part of your subscription you can ask for a list of fibro-friendly doctors and one for support groups in the US and Canada, so that you can find someone in your area to talk to. Knowledge is power - but so is having someone who knows exactly what you are experiencing. I know as my fibrofog got worse I really seriously began to worry about Alzheimer's disease. But my support group quickly reassured me that if I had Alzheimer's I wouldn't be aware of how much I am forgetting.
Another good site that keeps current research posted is Fibromyalgia & Chronic Myofascial Pain Syndrome - a site maintained by Dr. Devin Starlanyl, an MD who suffers from fibro. Her book is on the recommended list for this class as many people felt that it was too detailed for beginners. I strongly recommend both the book and the website as valuable resources. Note that right now she has posted a study that suspects there may finally be a blood test that can help to diagnose fibro more accurately - a real breakthrough!
A third great place to check in with regularly is the Fibromyalgia File from the Center for Current Research, which contains papers from the National Library of Medicine as well as clinical trials. The cost is $9.99 to download - but worth it to keep you abreast of developments. You have only your own fibro to keep track of - your doctor is trying to keep current on all kinds of illnesses - so you can be your own helpmate here.
And don't overlook Clinical Trials.gov where you can search for ongoing studies and even participate in some - making a real contribution to the Fibro Community. Making a contribution not only helps us all but validates your own worth.
The National Library of Medicine is also a great source.
FInally, bookmark Fibromyalgia Syndrome News.com which is updated daily - a great resource for breaking news.
