Interview with Dominie

Here's part one of my informative interview with Dominie Soo Bush. She is a patient advocate and well-known to many of us with Fibromyalgia and Chronic Fatigue Syndrome. She has struggled with these conditions herself and is active in the movement to bring more awareness about FMS/CFS. I found her answers to be very honest (refreshingly so), insightful and inspirational. Read on:

Q: Were you diagnosed with Fibromyalgia back in 1982?

A: Yes. The onset was sudden--literally overnight in June of 1982. My FMS symptoms worsened rapidly until I was forced to quit my job as a legal secretary 6 months later. Then 5 years later in 1987, I came down with a virus from which I couldn't seem to recover and developed CFIDS as well.

Q: What was known about the condition at the time, if anything?

A: Very little. One of the loneliest feelings I ever had was at the public library in Gainesville, Florida where I was trying to research this little-known illness. I found just a couple of short paragraphs about "fibrositis" in the Merck Manual for doctors. It said briefly that fibrositis was a condition of widespread muscle and body pain, depression, fatigue and insomnia. They recommended giving the patient anti-depressants. Doctors prescribed many different ones over the years in an effort to get my body to sleep. But it was like my "sleep clock" was broken, and I went around in a fog most of the time--either from the antidepressants or the lack of sleep. (Strangely, I was very depressed when taking antidepressants!) I now have a sleep page at http://www.fms-help.com/sleep.htm Getting restorative sleep seems to be a major problem for most people with FMS/CFIDS. Without adequate sleep, the immune system begins to fail.

Q: Have you seen a change in the “political” or social climate that has made life better or worse for those of us with FMS and/or CFIDS? Please describe.

A: Not really. People with FMS/CFIDS are still misunderstood by nearly everyone around them. The best thing that has happened is the availability of the internet where people can research health issues and also share information and encouragement with others. My early experience of FMS/CFIDS would have been much different and more bearable if I had had this kind of support.

Q: You mention that some people made you feel like your illnesses were “all in your head” or that you just were “lazy”. How did you combat that negativity? How do you wish you had, knowing what you do now?

A: I was unable to combat it. I was crushed. I cried. I became suicidal. Back then people thought you were a psychiatric case. I went from being a Type A, intelligent, high-achieving, career-minded adult to being unable to work or function in even basic tasks. All tests came back "fine" so people thought I was a malingerer or had psychological problems. There was very little sympathy. Only my sister-in-law who had a Ph.D. in virology said some wise words--she believed that all of my symptoms were coming from the hypothalamus. Interestingly, today that is what some researchers are looking into in regard to FMS/CFIDS. As far as how I would combat the negativity back then knowing what I do now--I would have used articles on the internet to educate my doctors and people around me by printing out things for them to read! Also, there are a number of doctors who have developed FMS/CFIDS and are now writing books about it! These lend credibility to the illness!

Q: What inspired you to begin your website and newsletter? When did you start http://www.fms-help.com? What’s your vision for its future?

A: In 1996 I got a computer and learned how to research the internet. I began finding things that helped alleviate some of my symptoms, so I wrote them down in a web page called "Tips for Coping with Fibromyalgia and Insomnia." At that time, I only had 14 tips, but I thought I was really on to something! Now I have 100 tips on the site and could probably easily write 500 tips for coping with FMS/CFIDS, but no one with "fibro fog" would be able to get through all of that! So instead, I send a free newsletter to those who are interested in keeping up with helpful ideas and tips that come my way.

In the second part of my interview with Dominie Bush, you'll learn which of her 100 Tips for Coping with Fibromyalgia & Chronic Fatigue Syndrome are her favorites. You'll also hear some personal stories of heartbreak and inspiration that just may surprise you and remind you why participation in such activities as the Million Letter Campaign is so very important.

Q: What’s the saddest FMS/CFS story you’ve ever heard? The most inspiring?

A: The saddest story was an article I read in the Jacksonville Florida Times Union newspaper several years ago about Dr. Kervorkian "helping" a lady with FMS/CFIDS to end her life. I felt almost sick when I read that! I kept thinking that if only this woman had found my site or had talked with others who were finding ways to get some relief, she would not have taken this drastic (and permanent) step. But I could also understand how her biochemical depression plus the unrelenting pain could bring her to that low point in her thinking, and also with doctors telling her there was no cure. I found out later that several more women with FMS/CFIDS also visited Dr. K. for the "ultimate" treatment.

The most inspiring story I ever heard was from a man who returned from the Gulf War only to be thrown into very trying personal circumstances. He was a single father working 3 jobs to take care of his family and became disabled by FMS/CFIDS. After several terrible and trying years, his dentist gave him a new immune product to try and he recovered almost completely after several months. He has been able to go back to work full time, goes to school full time, and still has the energy to take his children to amusement parks to ride upside down roller coasters!

Q: You have 100 Tips for Coping with Fibromyalgia and Insomnia on your site. Which three are your personal favorites and why?

A: It's hard to limit it to 3, but I'll try!

Tip #1 REDUCE STRESS -- This is SOOO important for people with FMS/CFIDS, but it is much easier to SAY this than to DO it. We live in a fast-paced world and most of us carry heavy responsibilities. My husband is my best "time and resource manager." He knows when I am overloaded and takes measures to slow me down and relieve some of the pressures in my life and work--for example, unplug the computer! (HA!)

Tip #9 IMMUNE SYSTEM -- Three years ago I began drinking an immune shake in the mornings, and I recovered 98% of my life and function. Prior to this, I had taken dozens of drugs prescribed by my doctors as well as dozens of nutritional supplements to control my symptoms, but these did not address the root problem which I now believe lies in the immune system. Mycoplasma infection may have something to do with FMS/CFIDS. I wish more research would be done on this subject! I have heard from people all over the world for 8 years about their FMS/CFIDS symptoms. Although they are from every continent and eat different diets and live varied lifestyles, their symptoms are identical! I think there is an infectious agent of some kind that takes over the immune function when a person is under too much stress (see Tip #1). Most people with FMS/CFIDS can point to an extremely stressful time or event in their lives when their symptoms began--usually rather suddenly.

Tip#14 ANTI-OXIDANTS -- Powerful antioxidants, such as OPC's, can help with pain and energy levels. Proanthenols was the brand I used for several years before I found the immune shake.

Q: Can you tell me a little bit about the Million Letter Campaign for May of 2005?

A: I am SOOO excited about this, Deanna! There are millions of us who have suffered with FMS/CFIDS for decades, but few doctors and medical researchers take us seriously! Most people you talk to don't know what FMS/CFIDS is, although more and more can name at least one person they know who has it. A newsletter reader, Pattie Caprio, came up with a great idea recently. This is to ask everyone with FMS/CFIDS to write a one page letter describing their illness, make 5 copies and send it to the SAME 5 addresses (news media, etc.) on the SAME day. We want to bring NATIONAL ATTENTION to this illness. We chose May 1, 2005 so that the letters would be received by the next Fibromyalgia Awareness Day on May 12, 2005. The website for the Million Letter Campaign is http://www.fms-help.com/letter.htm -- this site lists the 5 addresses we arre targeting. We ask ALL SUFFERERS to please take part in this very important event! It's something we can ALL do! We will speak as ONE VOICE and be heard! This will be much more effective than just writing isolated letters, which many of us have already done. I am thankful that I have the health and strength now to work on this campaign. I will not leave other sufferers behind to struggle with this life-robbing illness alone!

Q: What suggestions do you have for CFS/FMS sufferers out there so that they can cope with their conditions in a positive manner?

A: Read my 100 Tips for Coping at http://www.fms-help.com/tips.htm and subscribe to my free newsletter! There are also some good support groups out there. Don't try to go it alone! Stay connected with others who understand what you experience from day to day. This counteracts the negative comments you experience from time to time that can be so devastating. Hopefully as FMS/CFIDS awareness increases, research dollars will begin to flow and a definitive cause and cure will be found.