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
Q: Were you diagnosed with Fibromyalgia back
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
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
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?
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!
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?
Read my 100 Tips for Coping at http://www.fms-help.com/tips.htm
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.