Fibromyalgia - You're not alone

[Khürt Williams]

My wife was diagnosed with fibromyalgia almost 2 years ago. She had been having trouble sleeping, she was sensitive to light and touch, and she was always tired. When a kindergarten teacher asked my daughter to write down her mother's favorite thing to do, my daughter wrote "sleeping".

We have struggled through fighting with the insurance companies over how many physical therapy visits are allowed etc.

Eventually we went to see an out of network holistic doctor and an out of network physical therapist. The first visit cost $1000 and yes the bills are mounting.

On the plus side, she is getting the help she needs and things are not as bad as before. My wife did develop depression and is seeing someone for that but ... things are better.

Fibromyalgia takes it toll on the rest of the family as well. My wife does not get to do as much with the kids as before. There are some days when I come home and the kids are watching TV ( for hours ) curled up around the sleeping body of my wife. They complain that "Mama does not play with us anymore".

I can only imagine her world and what it must be like. It took me a long time to get that level of understanding. Like a dolt, I kept blaming her for not getting things done that she agreed to do. She was always late to events or would forget to get the kids from school ( I now know it's "fibro fog"). I am quite sure she felt quite alone and maybe in some ways still does.

I have now taken on a project to build an online community for people touched by fibromyalgia. It's for fibromyalgia patients and their friends, family and others to share their challenges, their triumphs .. their lives with this disease and become connected. I know there are other online forums but what I envision is something different. Something where people can become more related ( for want of a better word ).

I have this a site, "Fibromyalgia, You're Not Alone" at http://fibromyalgia.ning.com/. The site is patterned after another site, TuDiabetes.com, which was started by Manuel Hernandez. The site is just getting started and has few users and little content. My belief is that like Facebook, the users are the content. Registration and use of the site is free.

I am asking that you take a look and register and post something

[Fitness By Marilyn]

There are some medications that help. It may also be possible that she would not have to take them indefinitely but they do get you off the couch. Also sometimes you can get disability through Social Security. I don't know your financial situation but this could take it's toll on anyone's budget. There are some support groups that are very informative. One that comes to mind is Fibro Talk on Google Groups....

[Khürt Williams]

The finances are strained to be sure. My wife, Bhavana, started seeing a holistic doctor because traditional medicine provided nothing but referrals from one specialist to another. The cost is high ( these doctors do not take medical insurance ) but well worth it. She is having a better time of it now but stress and hormonal changes often lead to flareups. This week here menses are causing her so much pain she is unable to do much of anything.

[Fitness By Marilyn]

The doctor who diagnosed me and the medical community here does what they call integrated. My doctor is from India has fibro himself and very knowledgable about natural treatments. They combine all things natural with medicine and use natural whenever possible. We are very fortunate in that. I only took meds for a short while. What has helped me most is exercise. It does not seem possible at first but is certainly worth the effort. I am from a family of chemical sensitive persons so try to avoid all meds. My family also has multiple cases of fibro, lupus, chronic fatigue and other musculoskeletal diseases. I got a RX for Lyrica but have not yet been able to start it due to having dental work done and need to have female surgery. The Lyrica tends to promote excessive bleeding.....