April 23, 2005
Topic: Fibromyalgia Awareness This months meeting was held on April 23, 2005, and the main topic was fibromyalgia awareness. First I wanted to share a little medical news about the medicines we take for FMS and some new drugs that are becoming available. The week of May 7th is Fibromyalgia Awareness Week. It's encouraging to see the many events that are happening across the country, and some are in our neck of the woods too. 
Medical News Currently there are no drugs specifically approved for treatment of fibromyalgia. But most of us are taking medication prescribed by a doctor for our FMS. This is because these doctors have prescribed drugs that are meant for other conditions but can also affect the symptoms of FMS. This is called "off-label" or unapproved uses. Examples include antidepressants, anti-epileptic medicines, sleeping pills, anti-anxiety medications, and pain and anti-inflammatory drugs.
The good news is that fibromyalgia has become recognized as the real medical disorder it is. The result - companies are now performing clinicals to test new drugs specifically for treatment of FMS. This is a major step forward.
Check out the articles below. The first is a general article on off-label treatments and the rest give updates on new medications that target FMS: Off-Label Treatments, New Drugs Target Fibromyalgia New Study Shows Lyrica (Pregablin) Helps Reduce Fibromyalgia Pain New Treatment for Fibromyalgia: Duloxetine (Cymbalta)
Fibromyalgia Awareness
The week of May 7th is Fibromyalgia Awareness Week. While you may not be able to attend, note where some of these events are taking place. Some are relatively close. These might geneate some ideas for next year ... Master Calendar Of Fibromyalgia Awareness Day Events: From the National Fibromyalgia Association Let me share an experience. When people ask why I'm using a cane or why my husband is carring around all those pillows, I tell them I have fibromyalgia. This almost universally garners the response "fibro-what?" Then they usually change the subject and comment on the colorful designs of my pillows. This is frustrating and doesn't really get the word out about FMS. I already have buisness cards for Fibrofiends, so my husband suggested designing cards that explained what fibromyalgia is. The challenge - design something that is useful, catchy and fits on 3 1/2 by 2 inchs. Here's what we came up with (front and back are shown side by side): 
click here for full size card suitable for printing We passed a few out at the meeting and folks really liked them. We will make more.
We also thought about other items: bookbags, pens, refridgerator magnets, bumper stickers - anything that puts the name of this disease out there in front of people. I will be following up with some leads.
While these cards provide some information, a concise discussion of FMS is also usefull. Mike has added a new page which goes through some of the basics, but is a realitively quick read. Also here is another short article that can be usefull: What is Fibromyalgia, and Who Gets It?
Support Groups
Support groups are also a great way to educate. Remember Fibrofriends is open to not only those with FMS but also those that take care of them. But unfortunately all groups are not good, some even hurt. Below are some excellent thoughts around a healthy support group put together by the Mayo Clinic. These are specifically for chronic pain, but I think they are widely applicable. Benefits of support groups include: (1) A sense of belonging, of fitting in ... There's a special bond among people whose lives have been disrupted by the same problem. You share a sense of camaraderie. Once you have the experience of being accepted just as you are, you begin to feel more accepting toward yourself.
(2) People who understand what you're going through ... Family, friends and doctors can empathize with your problems, but in many cases they haven't experienced what you're going through. Your pain experience is unique, but it shares many common threads. Because support group members have a good idea of what you're feeling and experiencing, you may feel freer to speak your mind and voice your frustrations, disappointments and anger.
(3) Exchange of advice ... You may be skeptical of some of the advice given to you by well-meaning friends who don't have chronic pain. But when veteran group members talk, you know they speak with the voice of firsthand experience. They can tell you which coping techniques have worked wonders for them and which techniques haven't helped at all.
(4) Opportunity to make new friends ... These friends can bring joy into your life, as well as practical support - a listening ear when you need to talk, a chauffeur when you could use a relaxing drive and a companion to exercise
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