[FROM DOMINIE IN PREVIOUS NEWSLETTER (
see my husband's idea below in blue): "The main thing I can't do is travel - not even for 1 hour - without debilitating fatigue. There's something about riding in a vehicle that overloads my sensory input and after a very short time I have to recline the seat or have to turn back for home. This prevents me from going anywhere. My life is rich and full with many wonderful blessings - a great husband, terrific music students, a loving church family, a new puppy to love and train at home - but I am very limited geographically. Does anyone else have this problem? I am curious. I have had to scale back my life waaaay back from the many things I would like to do. Going to see my dear brother and his family in Colorado is tops on my wish list. They always have to come to Florida to see me, and it just doesn't seem fair. I've wondered about FMS/CFIDS patients who are able to crisscross the country going to medical conferences....how do they do that???!!"]Response from a reader--
"Yes, I do as well, did not even drive for about 4 to 5 years because of the same reason and also I get dizzy from all the moving cars and lights changing. Totally had anxiety attacks as well. Was afraid to drive as I did not want to harm anyone else let alone have an accident and put an even more burden on my husband if I did. It took my doctor giving my anxiety attack medication that I take so that I can get to my doctors appointments and I would still break down after getting to my destination. Had to start practicing just getting into the car and driving around the block in my neighborhood. So, yes I too have trouble traveling as well even if someone else drives. They say try and sleep during the ride and or stop and get out and walk helps some people."
[FROM DOMINIE AGAIN: My ever resourceful husband suggested that I put on dark wrap-around sunglasses when we have to travel, or maybe we can travel at night. The problem for me with riding in a car is the overwhelming input of stimuli from traffic, flashing light patterns from the sun shining through trees as you whiz by, and the constant need for balance and readjusting your orientation in the car. My brain just feels overloaded and it's tremendously exhausting! I recall having these problems when I was a child, but in the past few years it's resurfaced -- I'm 54. Today I tried my husband's suggestion and had absolutely no fatigue when we arrived at our destination. We only went a total of 30 miles, but still it was a wonderful change for me! I'm going to try this again!! Thought I'd pass along this tip, since so many of us experience severe, unexplainable travel fatigue.]
5. SPEND LESS TIME ON THE COMPUTER
I read this post on curezone.com and must admit it struck a chord wtih me! I think I'll get more sunshine and fresh air from now on!--
"Many people here get VERY involved in posting, reading, studying, responding to others in need, and indeed staying up half the night glued to the monitor with curezone "on". Yes, I confess to being overly involved. Years ago, I took a web development course, before 'internet' was much more than something the military used. My colleagues and I spent five intense months practically living/sleeping with our machines. ....Very quickly, we all began to notice 'symptoms'-- the primary one being something no one wanted to mention at first. Depression. Yes, a sort of mild depression that seemed unrelated to any reason in 'life'. Then there were weird neck discomforts, general malaise and a feeling of increasing toxicity. None of us looked well. We all became much more conscious of a whole host of general complaints, increasing, from headaches to exhaustion, to an inability to sleep well, to a kind of manic over-involvement. It all felt really draining. By the end of that course, I took my certificate, and wanted nothing more to do with computers. My whole being craved the earth, sun, air, water, and I went camping. Went to live in the woods for a time. Never did go into the industry, and yet--I just realized, here I am again! Just thought some of you might also like to examine how much time you spend attached to this place...it's ironic really, since the pursuit of health and wholeness can become such an addiction itself-- doubly ironic that many of us must be depleting ourselves at the same time! Always looking for another supplement? Angsting over every new twinge. Posting that such and such hasn't worked."
[FROM DOMINIE: As I mention in my 100 Tips for Coping with Fibromyalgia and Insomnia at www.fms-help.com/tips.htm, I think the flickering light from the computer monitor bothers the pineal gland in our brains. Spending less time on the computer is a great suggestion! We could probably all use more fresh air and sunshine.]
6. FUNNY FIBRO FOG STORIES NEEDED
Jeanne in the U.K. is publishing a book about fibromyalgia hopefully at the end of the year, and she is in need of some stories. Here is her request--
"I want to include something about fibro fog in the book and I am actually desperately looking for funny fibro fog stories? If you could include a line in your next email to this effect it would be wonderful. Please feel free to include my email address. I do need to know who the writer is, where they live, email address, website, etc. and if they mind if I use their details. I need about 250 to 300 words on a funny fibro fog story. Editor reserves the right to the story." Please email your story directly to Jeanne at
jeannehambleton@mac.com.
7. HYDROCORTISONE FOR FIBRO (revisited)
From a reader--
"I wanted to respond to the article about hydrocortisone, or prednisone, as most call it. Did you know that there is a bioidentical form of hydrocortisone called Cortef that does not have the evil side effects of steroids? I just learned this when I went to my bioidentical hormone doctor on Friday. It is the natural form of hydrocortisone made by the adrenal glands which are usually not functioning correctly in people with fibro or CFS. I researched it online and am very fascinated by it as it is actually safer than the Celebrex I take daily!"
8. HALLELUJAH ACRES DIET
From a reader--
"I went to your site to read the marital harmony article www.fms-help.com/marriage.htm. It was very good and I've bookmarked your site. I also noticed that you have been suffering from Fibromyalgia for some time now. Here is a website that I hope you might consider going to. www.hacres.com I don't know if your familiar with this site, but this particular site is a diet change based on Genesis 1:29. I'm not a health minister and I'm not affliated with them in any way. I have tried this new life-style change and still struggle with it because the way I was brought up. My parents didn't instill in me good eating habits. It is not easy but I get a weekly article from George Malkmus and you just can't believe the testimonies that I read all the time and they have alot of encouragement as well. I do believe that alot of our disease is from the foods that we eat along with prescription drugs and chemicals from lotions, shampoos and such. I usually don't even tell people about the Hallelujah Acres Diet, because people look at me funny, but I thought I would atleast email you and let you take a look at the site."
9. MEDS HELP SOME BUT NOT ALL
Why do meds and supplements not work the same for people with the same illness? Read this article entitled "One Man's Meat" by Jean Harrison, a CFS patient and president of the advocacy group Mothers Against Myalgic Ecephalomyelitis, Inc. (MAME). http://www.immunesupport.com/library/showarticle.cfm/id/7357/searchtext/jean%20Harrison.
10. WHAT I USE
Here's my personal list:
www.fms-help.com/what.htm. I also share hundreds more ideas for fibromites through supportive articles, ground-breaking research and newsletter archives at www.fms-help.com. We are all different. There is no one "magic bullet," but I'm for anything that helps! Dominie Soo Bush
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