1. READERS WRITE
"Thanks, as always, for your comprehensive newsletter and your compassion for those of us with FM/CFS."
"I was excited to come across your page www.fms-help.com. Thank you for putting your information out there!"
"Thank you for your informative site I was lucky enough to stumble across."
"I recently found your website and info. Your are doing a wonderful thing here. I am deeply grateful."
2. DR. JACOB TEITELBAUM
From a reader--
"I just wanted to send a note regarding Dr. Jacob Teitelbaum's work and recommending his book "From Fatigued to Fantastic". My wife (who has fibromyalgia) is reading his book and finds it to be one of the most helpful things she's ever read! He is an MD who got fibromyalgia while he was in Med school and had to drop out until he got it under control well enough to finish. Since then he's focused on trying to help CFS/FMS sufferers find relief. Since he is an MD and a FMS sufferer, he comes from a place of complete understanding. He helped develop a line of supplements that he feels help the specific symptoms of CFS/FMS, and at first I was put off by this. But after thinking about it, who better to come up with formulas that help CFS/FMS sufferers than somebody who is one himself! He also has the following statement on his web site: "I have a policy of not taking money from any company whose products I recommend - including the products I've designed for energy and sleep. I've asked the company to donate my share of the profits for these products to charity."
One of the big symptoms my wife has developed is that bone-deep weariness and tiredness. One of his first recommendations is to take D-Ribose, 5g three times a day, for 3 weeks, and tapering off after that. She is finishing her third week, and her energy is MUCH better! Just this one thing alone has made it worth the relatively low cost of the book.
Here is his web site: http://www.endfatigue.com/ There is even an online treatment evaluation tool, a free version that takes about 30 minutes to complete, and more in-depth version that costs $160 but takes more like 3 hours to complete. The in-depth version includes a much deeper patient history, including lab results and recommendations for your doctor. My wife has not done this yet. She wants to complete the book first. The doctor on Oprah, Dr. Mehmet Oz, recommends Dr. Teitelbaum's book and work, for whatever that's worth."
From Dom: Awhile back I read over Dr. Teitelbaum's list of nearly 300 meds and supplements that he tries with his FMS/CFIDS patients. I was familiar with most of them - either from trying them myself or from mentioning them in this newsletter over the past 13 years. I could tell from Dr. T's list that he understands FMS/CFIDS and the functions of the body that don't work right anymore and trying to get things back into order.
3. QUESTION FROM READER - HUMIDITY and FMS
"I'm facing the possibility of moving from Wyoming to Missoula, Montana, where the humidity average for the year is 83%!!! Here in Wyoming there is a lot of wind which isn't good. I know barometric pressure is a killer for people who suffer from fibromyalgia. And then there is the humidity concern. Any comments from someone who lives in a humid cold climate? I'd be leaving the wind, but going into humidity." - Sharon blessed_89@msn.com
From Dom: Search my newsletter archives at www.fms-help.com/newsletters.htm for comments my readers have sent in about weather, humidity and barometric changes and how it affects their fibro.
4. LOW CORTISOL and CFS
From a reader--
From Dom: A friend uses Cortef and says it has helped his CFIDS fatigue a lot.
5. CHILDHOOD ABUSE LINKED TO CFS
Links from a reader--
From Dom: Childhood abuse and neglect can't be a strong factor, because of the millions of people who have lived with malnutrition, poverty, in war zones, severe abuse, etc. and have decent health as adults. I think a lot of FMS/CFIDS is genetic predisposition and maybe even in utero influences.
6. SAVELLA
From a reader--
"Here we go again....SIGH!"
Milnacipran hydrocholoride (Savella) approved for fibromyalgia
7. AVOID DAIRY
From a reader--
"Something that works for me is avoiding dairy. For YEARS I suffered with colds, strep throat and bronchitis. Giving up dairy made me almost cold-free."
From Dom: I gave up dairy (as much as possible) quite a few years ago. It really helped my allergies. Also, I think the hormones in milk were playing havoc with my endocrine system. See my 100 Tips for Coping with Fibromyalgia at www.fms-help.com/tips.htm.
8. SIDE EFFECTS
From a reader--
"I am in so much pain that it is hard to even think and after 21 years of this I am so exhausted and sad. I want to feel better more than I can say so I am desperate to find some relief. I tried the Lyrica and the side affects were horrible and I even tried Cymbalta which helped a little but I had some side effects that were not acceptable."
From Dom: I have a list of my meds, supplements and lifestyle helps that help keep me functional at www.fms-help.com/what.htm, including pain suggestions.
9. FOOD FOR THOUGHT
From a reader--
"You lose your health to make money then you lose your money to restore your health."
From Dom: Is this ever the truth!! I was working myself to death at an extremely stressful job when I developed FMS in 1982 - see www.fms-help.com/fibro.htm. For a list of occupations my newsletter readers had when they developed FMS/CFIDS, see www.fms-help.com/occupations.htm - what an interesting list!
10. TOPICAL ANESTHETIC DANGERS
From a reader--
11. DOM'S UPDATE
I just finished reading a most interesting book, "Queen of the Dark Chamber", kindly sent to me by a newsletter reader - (copyright 1953) by Christiana Tsai, who suffered from post-malarial virus in her brain and bone marrow. She could not tolerate any light or noise and was bedridden in a dark room for 50 years. (Does this sound familiar??) Her virus could not be detected because it was not in her bloodstream! This bit of information mentioned in her book fascinated me in regard to those who are suffering from severe FMS/CFIDS - I have reported on various youtube video links about these poor suffering souls in past newsletters, such as--
Doctors' disbelief kills one woman with ME/CFS
Perhaps our blood tests come back normal because the virus is not in our blood but in our brain!! I believe that I have some kind of hypothalamus malfunction caused by a virus. I stay relatively functional only because of meds, supplements and lifestyle helps that I found helpful (list at www.fms-help.com/what.htm). My remaining symptom is an inability to travel by car more than about 30 miles before becoming incredibly mentally fatigued and overwhelmed, like I can't process all of the incoming stimuli. This causes me to feel near collapse, so I am now useless for travel.
Also, I must avoid unnecssary stress. I have had to cut out everything in my life that is unnecessary, so that I can focus on making a living (I teach music) and playing the organ for my church (which I love). Other than that, I have no social life unless someone comes to see me at my house. I had my FMS/CFIDS fairly well managed until I worked in toxic mold in 2005 www.fms-help.com/mold.htm. Although improved, I am still not back to where I was in my pre-mold exposure days. Lesson learned: STAY OUT OF SICK BUILDINGS! Tragically, many of our schools, libraries and public buildings are filled with mold! Also, see my page about mobile homes at www.fms-help.com/mobile.htm and also www.chronicneurotoxins.com, if you think you are being exposed to toxic mold.
Your fibro friend,
Dominie Soo Bush
==================================================
II Corinthians 1: 4 - "Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God." Visit Dominie's FMS/CFIDS Homepage at www.fms-help.com for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their families.
Return
to Dominie's FMS/CFIDS Home Page