DOM'S NEWSLETTER
SEPTEMBER 18, 2010
A Christian-based newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.) - and their families.
Previous newsletter: www.fms-help.com/091310.htm Archives: www.fms-help.com/newsletters.htm Fibro Story: www.fms-help.com/fibro.htm
CFIDS Story: www.fms-help.com/fatigue.htm Insomnia Story: www.fms-help.com/insomnia.htm What I Use: www.fms-help.com/what.htm
25 TOPICS below. Don't miss the RED ones. Readers comments in BLACK. My comments in TEAL.
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1. READERS WRITE
"Thank you so much for the hard work and dedication you put into your newsletters. You are doing work that many of us wish we could do, but are bedridden/housebound."
"I have been reading your fibro page www.fms-help.com/fibro.htm and I love it."
"Thank you for your hard work in putting the newsletter www.fms-help.com/newsletters.htm together all of these years! May He continue to improve your health!"
"Your site www.fms-help.com has been very informative. Thank you and God bless!"
"You helped me learn so much about this illness. Depressed as I was, it helped tremendously to read of the experiences so many others have had. It also helped me to know that I am not alone in this crazy illness!! I am so thankful to God for leading me to you. HE is faithful when we cry out to Him for help!"
"Thanks again for your lovely newsletter www.fms-help.com/091310.htm."
2. ABNORMAL BRAIN FUNCTION & FIBROMYALGIA
From a reader--
http://chronicfatigue.about.com/b/2010/08/10/heightened-brain-activity-pain-in-fibromyalgia.htm?nl=1
3. PREGNANCY & FMS/CFIDS/M.E.
From a reader--
"I liked the article in the
latest newsletter www.fms-help.com/091310.htm re: cfids develeped in pregnancy, as i developed
m.e/cfs in pregnancy. Except in my case it was worse during the pregnancy
where i was mostly bed-bound for the entire 9 months. Once i had my
son, i improved but am still very sick."
4. CFS & THE VIRAL CONNECTION
From a reader--
https://www1.gotomeeting.com/register/302219616
FROM DOM: My CFIDS began in 1987 after a terrible, lengthy respiratory virus www.fms-help.com/fatigue.htm.
5. LUPUS
From a reader--
"I am writing to you in the hopes that maybe another one of your readers will benefit from my experience. I am a Physician that suffers from severe fibromyalgia/CFIDS. I have written on a couple of occasions in reference to some of the things you write about, as well as my own experiences on the above 'disease/syndrome' (which many of my own colleagues can not acknowledge - how unfortunate for them, as well as those that suffer). I have also written about my intractable, drug resistant insomnia. Even though I suffer from from fibro/cfs......I was determined to see if maybe there was something I may have that could be worsening (or at least contributing) to my problems. I went to a friend and told him I wanted to be checked for everything under the sun, including autoimmune diseases; he somewhat laughed at my demands, but reluctantly gave in. EVERYTHING came back negative including my ANA blood work........so I was fine......as he said. I knew from my schooling that one could have a negative ANA, but still possibly have a vasculitis, i.e. Behcet's Syndrome, Sjogrens Syndrome, Reynauds (which I have). I knew that in about 2% of cases, people could have a negative ANA, but have LUPUS. I DEMANDED he do a DNA - DS which is a specific test for LUPUS. He did.......and IT CAME BACK VERY HIGH. I went to 2 other labs to have the same test done (because he was sure the 1st lab made a mistake. To make a long story short, I have a severe case of LUPUS! About 90% of the time LUPUS occurs in women, usually between the ages of 20-45. For it to occur in a man in his late 50's.......very unusual. MY POINT, DON'T OVERLOOK THE UNUSUAL. Just because some, or even many of your readers may have had blood work done that included an ANA test that came back negative.......I would suggest they ask their Physicians to have a DNA-DS test done to definitely rule out LUPUS. I unfortunately happen to have 2 of the 3 types of LUPUS.......systemic and CNS.......WHICH MAY VERY WELL ACCOUNT FOR "SOME" OF MY EXTREME FATIGUE, TERRIBLE HEADACHES AND HORRENDOUS SLEEP PROBLEMS. [I am now on medication for LUPUS.] I wish you and all of your readers nothing but the best and especially good health."
6. COSTOCHONDRITIS
From a mom--
"My daughter suffered from costochondritis for a very long time and was able to overcome it with digestive enzymes taken on an empty stomach which is when they act like anti-inflammatories."
FROM DOM: Costochondritis is inflammation of the sternum - very painful and sometimes associated with fibromyalgia. It's interesting that years ago medical experts said fibromyalgia was not an inflammatory disorder, but just felt like one. Not so sure now. Here's some info about pancreatic enzymes acting as anti-inflammatories: http://www.myhealthmybody.com/trellis/ADM1745_Pancreatic_Enzymes. Snippet: "Enzyme preparations have been shown to be useful in the following situations: Cancer, Digestion support, Hepatitis C, Herpes zoster (shingles), Inflammation, sports injuries and trauma, Pancreatic insufficiency, Food allergies, Multiple sclerosis, Rheumatoid arthritis, and other autoimmune disorders." Take a look at this enzyme formula (select your country, then type "enzymes" in the search box).
7. CANINE HEROES OF 9-11
From a friend--
http://lucianne.com/article/?pageid=what_a_good_dog - search and rescue dogs
FROM DOM: You may need a kleenex for this one! Watch to the end.
8. HYPOTHYROIDISM
From www.newsmax.com - Search word "hypothyroid" - Snippet:
"A thyroid imbalance can lead to 59 separate diseases! And that's why I must ask if you've been experiencing . . .
Do you have any of these conditions . . .
Do you right now have . . .
A thyroid deficiency can be at the root of all these symptoms and serious diseases, and it usually goes undetected and often untreated!
How did we get into this predicament? It's shameful, but there are two reasons for it . . .
Why Hypothyroidism Is an Epidemic Today
Reason #1: An estimated 52 million Americans are afflicted with thyroid hormone deficiency (and more every year), and the main culprit is a poisonous ingredient in foods and consumer products that destroys thyroid production (you can thank Washington politicians who continue to allow it).
Reason #2: The standard thyroid test taught in American medical schools — the TSH test — is among the most inaccurate tests in modern medicine, so hypothyroidism is "usually missed," which sets the stage for disease."
9. NUMBER YOUR DAYS
From Joni Eareckson Tada's Daily Devotionals (used with permission by Joni and Friends International Disability Center) - I signed up at www.joniandfriends.org--
Number Your
Days
"Teach us to number our days aright, that we may gain a heart of
wisdom."
- Psalm 90:12
I have this habit of numbering my days: When I
wake up in the morning, I make a point of thinking, "Lord, this day is worth a
thousand years of eternity and that means that the people I meet, the letters I
write, the conversations I have... these all have value in Your sight. Teach me
to measure each moment."
I haven't cultivated this habit overnight.
Because of all the things to be counted, this is the hardest - to number our
days. We number everything else so easily. We know how much money we have in our
purse and how many dollars in the bank. Farmers number their sheep and cattle.
Restaurants number meals served in a week. Teachers check off attendance
records. Gardeners can tell you how many tomato plants are in the
backyard.
Yet we find it hard to number something so precious as our
days. Perhaps that's because we see our days stretching on and on. They seem
infinite and so there is no need, we think, to number them. Things we fail to
account for, we waste. That's why it is wise to ask God to teach us to consider
each day separate from the next, distinct in its purpose, unique in the way it
is to be lived.
James 4:14 says, "What is your life? You are a mist that
appears for a little while and then vanishes." And if we need another reminder,
Isaiah 40:6-7 says, "All men are like grass. The grass withers and the flowers
fall, because the breath of the Lord blows on them. Surely the people are
grass." When we finally arrive in heaven, we will be surprised by many things,
but nothing will amaze us more than how short life on earth really
was.
You have written this day in Your book, Lord, so teach me to
spend it wisely for Your glory.
10. IT TAKES A BRIT TO SAY WHAT WE SHOULD BE SAYING
From a reader--
11. SUFFERING
FROM DOM: Our senior pastor is afflicted with all kinds of dreadful physical problems. We hear so many good messages, coming from this man of God who is well acquainted with suffering and grief, about how to keep praising God despite our problems. He is such an inspiration to us all. I really hate this "health and wealth" mentality - or the "prosperity gospel," because it is false and leads to disillusionment with God. Read the book of Job www.biblegateway.com. Now there's a man who suffered, and God allowed it. Also, the Apostle Paul went through suffering that I shudder to think about - and what about Jesus? What about the 12 disciples who were all martyred? Just something to think about for those who say that suffering is not part of God's will. There's a song our church secretary sang in church recently - about God's will includes laughter and tears, sorrow and joy, pain and happiness. It was great - and the truth. Well, this is all temporary. We get our new bodies soon! To be understood is all we ask - it's the same thing Job wanted from his 4 friends during his time of suffering."
12. "WHY I DELAYED THE XMRV PAPER"
From a scientist--
http://www.the-scientist.com/blog/display/57628/ - more about the XMRV/CFS controversy
13. FAMILY FEELS VINDICATED BY XMRV FINDING
From a reader--
http://www.mountainx.com/news/2010/091510local-family-feels-vindicated-by-breakthrough-research - Local family feels vindicated by breakthrough research.
FROM DOM: Read the comments at the end of the article.
14. READERS' PRAYER CORNER
From a
reader--
SET YOUR CLOCKS
Someone has said if Christians and Jews really understood the
full
extent of the power we have available through prayer, we might
be
speechless.
Did you know that during
WWII there was an adviser to
Churchill who organized a group of
people who dropped what they were
doing every day at a prescribed
hour for one minute to collectively
pray for the safety of England ,
its people and peace?
There is now a group of
people organizing the same thing here
in America .
If you would like to participate: Every evening at
9:00 PM
Eastern Time (8:00 PM Central) (7:00 PM Mountain) (6:00 PM
Pacific),
stop whatever you are doing and spend one minute praying
for the
safety of the United States, our troops, our citizens, and
for a
return to a Godly nation. If you know anyone else who would
like to
participate, please pass this along. Our prayers are the
most
powerful asset we
have.
15. ASPARTAME: WORSE SWEETENER THAN HIGH FRUCTOSE CORN SYRUP
http://articles.mercola.com/sites/articles/archive/2010/09/15/aspartame-side-effects.aspx
16. CONTINUOUS CHEST COMPRESSION - SAVE A LIFE
From a reader--
http://medicine.arizona.edu/spotlight/learn-sarver-heart-centers-continuous-chest-compression-cpr
17. BERGAMOT
From a reader--
"I heard that Bergamot
was helpful for Chronic Fatigue/Fibromyalgia so I thought I'd give it a
try. It began helping me with my aching right away. My body only
aches now if I try to do too much or go off my diet (instead of
aching almost every day). I have more energy and it lasts
longer. I started out with one drop of Bergamot a day - rubbing it
on my palms - (that was all my body could handle) and have worked
my way up to 3 now. And when I do try to do too much it still helps me get
through the crashes, which are fewer now, by the way. The longer I take Bergamot
the better I feel, but I know I have to take my time and allow the body to heal.
And of course I eat very well too. No sugar, white flour, dairy,
caffiene, and avoid chemicals and additives, etc. My body
seems to be absorbing nutrients better, which is a major win for me.
Before I starting using Bergamot my last lab test indicated that my cells were
starving and I had many severe deficiences. Now I'm slowly taking more of
some supplements that before my body just wouldn't tolerate. I've had
orthostatic pressure for quite a while and that is improving as is my brain
function and memory. I'm especially thrilled because there's no heavy duty
herxheimer reactions with the low dose that I use, so its actually making me
feel BETTER during this recovery period. I have had Chronic
Fatigue/Fibromyalgia for almost 40 years and Bergamot is the best single thing I
can ever remember using for it. I have used all kinds of natural
supplements. I was to the point where I was getting kind of
hopeless at finding anything that would make me feel better because my body was
unable to handle so many supplements, and to find one thing that does so much is
really like a miracle! I'm so thankful and I really hope this can help
other people!!!"
FROM DOM: Essential oils are amazing! See www.fms-help.com/oilsstore.htm. I researched Bergamot and found this online: "Bergamot can be found in Italy, Morocco and the Ivory Coast, it originated in Asia. Bergamot is a small tree with long, oval green leaves with white flowers. The bergamot bears a small round fruit that is yellow when ripe. Bergamot's essential oil is extracted by cold expression from the fruit peel. It has a spicy, delicate scent that is light and refreshing. Bergamot is used as an antidepressant, and is calming and refreshing for the nervous system. It is highly useful as an antiseptic and is used as an insect repellent. When using as an insect repellent use caution and avoid strong sunlight, bergamot contains furocoumarins, which can cause photosensitivity. Bergamot received its name from the city where it was first cultivated, which was Bergamot, Italy. It is said that Christopher Columbus brought the tree from the Canary Islands to Spain and Italy. Bergamot oil was very valued oil during the 15th to 16th century; it was used in teas and perfumes. In voodoo it is thought to ward off evil and danger. In today's society bergamot is also very valued oil, it is used to aid in the digestion process, in treating urinary tract infections, and also with colic. The essential oil of Bergamot is great with acne, eczema, varicose ulcers and seborrhea of the skin and scalp. For people with sensitive skin it is advised to use in moderation because if used in excess may irritate the skin." Look for Bergamot at www.younglivingworld.com (sponsor #905788).
18. APPROVED FOR SSDI
From a reader--
"I am a former teacher, 47 years old, who worked my way up to earning my M.S. Degree in Education Leadership which afforded me the opportunity to become a part of Elementary Education Administration. During my years in college I also worked full time. Because of my illness I had to drop a couple of semesters, and then make them up. I did not know what the illness was, however, I knew something was wrong and it was getting worse. As I advanced in my career, I was so dedicated that I worked 12-15 hours nearly every day and weekends as well. After a few years of stress and working myself into a frazzle both mentally and physically, my body began to make me give in to the illness. I would get Bronchitis about 6 times a year and it would (and still does) take 2-3 rounds of antibiotics to clear it up. Sometimes it progresses into pneumonia. Accordingly, my Fibro and the way my body hurts makes it so much worse. After working with intense dedication, I began missing multiple days of work more and more often. Needless to say, my performance became a hindrance to what my heart wanted to accomplish, thus rendering me a less desirable employee in the eyes of my superiors. You know the cliche that you don't look sick didn't help matters. Eventually, I earned the reputation as a slacker who just didn't want to show up for work. I even had one principal underhandedly do everything she could to get me to leave her school because of my attendance. I became deeply depressed, which I have learned from your website is a common symptom of our illness. Finally, I became a patient of Dr. Ada Lopez Mendez, a rheumatologist in Winter Haven, Florida. She is so wonderful. She has been such a blessing and encourager to me. She helped me to know that I am still a significant person even if my body can't keep up with my intentions. In addition, she has been very understanding and extremely supportive to my "giving in" and admitting that I am now disabled to work. I have been told on many occasions that 95% of people who file for SSDI are denied the first time they apply for it. I just want to share with everyone that I just found out today that I have been approved, and it was my first time applying. I believe that Dr. Mendez helped me tremendously when she filled out my paperwork. I am also thinking that the government is becoming more aware of our debilitating disease, and realizing that it truly does devastate our lives just as we claim it does. I would like to encourage everyone to search until you find the right doctor who sincerely believes fibro is real, and one who has your best interest at heart. They are out there. I found one! Go ahead and apply for SSDI if you need to."
FROM DOM: See my page www.fms-help.com/disability.htm with tips I received from readers who were successful in getting SSD for fibromyalgia and chronic fatigue syndrome.
19. MARRIAGE
From a reader--
"I was just taking notes on your marriage advice page www.fms-help.com/marriage.htm, great advice for a newbie like me!"
FROM DOM: Those of us with FMS/CFIDS do not need unnecessary stress and tension in our homes. Check out my Marital Harmony page www.fms-help.com/marriage.htm.
20. YOU WANT SALT WITH THAT?
From a reader--
http://just-me-in-t-health.blogspot.com/2010/09/you-want-salt-with-that.html - does salt cause hypertension?
21. WHY VEGETARIANISM IS NOT RIGHT FOR EVERYONE
22. "OBESE FROM THE HEART"
From a scientist--
Book: "Obese from the Heart" by Sara L. Stein, M.D. - Snippet from http://obesefromtheheart.com - "Finally a book comes along that answers why we are obese. Overweight is a lifestyle issue – simple thermodynamic imbalance – too many calories in, not enough calories burned. Any diet and exercise program that is enjoyable will help you succeed. Obesity, on the other hand, is a medical condition of serious inflammation, chronic pain, disordered metabolism, altered brain chemistry, food sensitivities, and serious vitamin and mineral deficiencies. Applying severe restrictive diet and exercise to an ailing body may worsen, not improve, the obese person’s health."
23. MOLD DANGERS
From a reader--
"I'm wondering if [my family member] sleeping in a bedroom where all around her bed was full of mold and all round the opposite wall - could have lead to her death? She passed away [a few months ago] with renal failure (I think). We have not gotten the death certificate back yet. She did smoke but deteriorated very quickly over the last two years after we moved into this house. Her room is the only room with bad mold."
FROM DOM: First, my sincerest condolences to this family! And yes, mold can kill - see http://www.air-zone.com/blackmold.html - Snippet: "The Black Mold Stachybotrys found in homes, offices, and schools has been linked to fatal pulmonary disorders." I had a life-threatening experience working in "sick building" that was filled with toxic mold from hurricane damage in 2004-2005 - see my mold story at www.fms-help.com/mold.htm. (In some ways, I have still not completely recovered and it is 2010.)
24. FRIENDSHIP
This wonderful acrostic was composed by a lady from church--
Friendship - by Becky Rouse
100 Tips for Coping with Fibromyalgia &
Insomnia
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DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought. This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.
