DOM'S NEWSLETTER

www.fms-help.com

AUGUST 27, 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/082310.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

20 TOPICS below.  Don't miss the RED ones.  Readers comments in BLACK. My comments in TEAL.

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1.  NIH CONFIRMS XMRV VARIANTS IN CFS PATIENTS (8/23/10)

Links sent in by readers--

www.prohealth.com/ea/EA082310 

http://www.prnewswire.com/news-releases/study-presence-of-murine-leukemia-virus-related-gene-sequences-found-in-cfs-patients-101316939.html 

4.  INSOMNIA & SLEEP TEMPERATURE

FROM DOM:  My husband heard about this on the radio:

http://www.chilitechnology.com/products.php - Snippet: "ChiliPad is a microclimate thermostat control system that COOLS & HEATS your bed. A mattress pad solution that will fit any sized mattress this system allow you to control the temperature of your bed like you do your home or your car. Turn the temperature down to 46 degrees F or up to 118 degrees F, YOU decide. Insomnia research has shown that sleeping at temperatures between 60-68 degrees F greatly improves you ability to fall asleep and stay asleep."

From a reader--

http://cfspatientadvocate.blogspot.com/2010/08/rainmakers-wpi-makes-things-happen.html

FROM DOM:  The WPI discovered the XMRV link to CFS and announced it in November 2009.  See www.fms-help.com/XMRV.htm.  I began using DNA Immune, a DNA-protecting and immune-boosting product in December after this news came out.  So far, so very good.

6.  TINNITUS RELIEF

http://magnilife.com/product-tinnitus-relief.asp

FROM DOM:  Looks interesting!  Has anyone tried this?  I might.  Have had tinnitus for decades - ranging from severe (crazy-making) to annoying (presently).  It is made worse by loud noises (music) and certain medications (aspirin).  I have no cartilage left in my jaw joints, so I don't know if this is causing the ringing or not.  I had TMJ really bad in my 30's.  Wore a mouth splint, had my teeth filed down, etc.  My teeth kept moving around.  Thankfully, the TMJ went away in my 40's.  I am now 58 but suffer with tinnitus 24/7.  Here's a lengthy list that someone compiled of things that supposedly "cure" tinnitus: http://tinnitussupport92262.yuku.com/topic/386/t/T-Treatments-Snake-Oil-or-Useful.html.

7.  FLOATERS

FROM DOM:  As long as I'm complaining, can I please mention gigantic floaters in my left eye?  11 years ago, I was at my mom's house and laid down on the couch for a short rest.  It was finally time to leave for home, so I got up, got in my car and noticed a bug on the windshield......but the bug wouldn't come off!  Guess what??  It was a HUGE floater in my left eye!  This floater takes up most of my field of vision and looks exactly like a MUSICAL 8th NOTE!!!!!  GRRRRRR.  It is so annoying to battle this disability as a performing musician and music teacher!   It is always there and now more floaters are in the same eye.  My eye doc says nothing can be done about floaters.  Oh well. One day I'll have my new body!  As annoying as tinnitus, floaters, fibro and other ailments are, there are worse thing, so I will be happy just to stay out of hospitals....'nuf said.

 8.  PEOPLE WITH CFS SHOULD NOT DONATE BLOOD

From a reader--

http://www.cnn.com/2010/HEALTH/08/23/chronic.fatigue.virus/?hpt=T2 - Conclusion: "Researchers are looking for ways to protect the blood supply from possible contamination......The AABB, a blood-banking organization, recommends that people diagnosed with CFS be discouraged from donating blood or blood components."

9.  COMFORTABLE BRAS

Reader 1--

"Just got thru reading your newsletter www.fms-help.com/082310.htm, and the reader who wrote about not finding a comfortable bra could have been me!  I have found a very comfortable bra thru Dream Products - it even snaps in the front for arthritis readers!  Here's the website - scroll down to where it says the snap front closure!  I can wear this bra all day!!  http://www.dreamproductscatalog.com/listings.cfm?cat=6."

Reader 2--

"To the reader who is looking for bras: I, too, have problems wearing any clothing at all!  Seams are painful!  BUT I have found one bra that I can tolerate..the one I found is not wire - the wire has been replaced with some soft fiber - so you get the lift or support of a wire bra without any wire EVER poking through...the straps are made in wide and even some with extra wide, if you prefer...the cups are soft, smooth, seamless with the tinest bit of stretch in the straps.  VERY comfortable.  These bras are pretty and that is why I did not give them a chance at first.  I used those hefty, Playtex bras that made me claustrophobic when wearing them. BUT I NEEDED SUPPORT!  I got mine at Lane Bryant, but if you are smaller breasted, just go directly to their website and see what you can do.  The bra is CACIQUE (pronounced KA'SEEK)....i GET THE FULL COVERAGE BRAS...LOVE THEM. GO TO www.cacique.com and see what you find.  There are also places that fit you personally by appointment and ORDER them just for YOU.  You can't be shy...you get touched and lifted with cold hands while sitting in a small room with a mirror....but you get the right bra for you...and they last forever." 

10.  FRIENDLESS FIBROMITES

From a reader--

"TO THE LONELY READER www.fms-help.com/082310.htm - Most of us have experienced what you have....losing one friend at a time until they are ALL missing.   what gives?  I think they don't trust us anymore.  We are undependable...we cannot be trusted to be well on the appointed day we plan to meet .  And if the shoes were on the other feet....I PRAY I would not be that sort of disloyal friend.  But I wonder.  I realize it must be difficult to be our friend.  We are sick most of the time...and when asked "how are you?" they are afraid you might TELL them.  I dont.  i informed everyone I know to not ask that question. Here in America, it is a casual greeting: "how are you?"  "fine, and you?"  and so on....only those who REALLY want to know will dare to put those words to us...and it will almost always end with "I really want to know".  And those who ask are far and few between.  We are all out there, so why is it we can't we FIND one another?  and if we WERE to find one another, would we BE ABLE to make a difference to  one another's lives?  or would we all be too ill and weak to be able to make friends with one another?  I have yet to meet two wonderful ladies that I met through this newsletter.  Both of these ladies live right here in my city and yet we have not yet met.  I have been too ill..bedridden most days. And they have their own fibro/M.E/CFIDS miseries.  HOW will we ever get to be friends?  As lonely as it actually IS, there seems to be a place we fit...between a rock and IT.  that place called LONELINESS."

FROM DOM:  This reader is absolutely eloquent!  I really appreciate the thoughts expressed.  FMS/CFIDS has pretty much ruined my social life.  I have wondered how truly sick people with FMS/CFIDS can go jetting around the country to conferences about this illness, when I can't get 30 miles from my house.  Of course, there are various degrees of FMS/CFIDS - some are not affected as severely as others and are not as debilitated.

 11.  THIEVES KILLS GERMS

"Thieves essential oil www.youngliving.com (sponsor 905788)  is a unique blend of powerful immune boosting oils. This combination of rosemary, cinnamon, lemon, eucalyptus, and clove, clinically-proven to fight germs, is the foundation for Young Living's amazing home and personal care product line, including: household cleaner, toothpaste, hand soap, and more." 

FROM DOM:  I use various Thieves products and just love them!  I say LOVE because "like" is too weak for how I feel.  I diffuse Thieves essential oil in my classroom.  I also love Thieves lozenges becaus they have never failed to stop a sore throat in its tracks.  And I love Thieves cleaner - I put a tiny amount in a spray bottle with water to clean piano keys, and I make a stronger solution in a spray bottle for my bathroom and kitchen cleaning.  It is SO NICE to NOT need harsh chemicals to kill germs!  I also like Thieves foaming hand soap and Thieves mouthwash.  With all the germs and viruses in our world today, it makes so much sense to use Thieves.  Visit my essential oils store at www.youngliving.com (sponsor 905788) for more info.  If you are not familiar with essential oils, see my page at www.fms-help.com/oilsstore.htm for a list of my favorites and why!  Fascinating info.

12.  SALT AS AN ANTI-DEPRESSANT

http://articles.mercola.com/sites/articles/archive/2010/08/25/why-has-this-lifesustaining-essential-nutrient-been-vilified-by-doctors.aspx - There's a DIFFERENCE between NATURAL salt and PROCESSED salt.

 13.  NATIONWIDE MEAT RECALL

http://www.cnn.com/2010/US/08/24/meat.recall/index.html

From a reader--

"Just another reason why we eat organic meat.  And eggs.  And milk.  Well, you get the idea.  Never had a recall on organic products to my knowledge.  Yes, it is a BIT higher, but unless you are gobbling like a hog, the price won't kill your budget.  That is, however, IF you HAVE a budget.  ROFL!!!!"

14.  DR. NANCY KLIMAS

From a reader--

"I am a patient of Dr Nancy Klimas, although established patients now only get to see her once a year! That poor woman is trying to help not only her own patients, but the whole country, with all her traveling & communicating with the CDC, NIH, etc."

15.  FIBRO FOG

http://www.arthritistoday.org/conditions/fibromyalgia/all-about-fibro/fibro-fog.php - Snippet: "Fibro fog – also known as fibromyalgia fog and brain fog – is a term commonly used for the cognitive difficulties that can occur with fibromyalgia. These include confusion, lapses in memory, word mix-ups and difficulty concentrating.  The reason for fibromyalgia fog has been the subject of several studies and much speculation. One of the most popular theories about fibro fog has been that these problems are caused by sleep deprivation and/or depression, but one study found that neither poor sleep nor depression seemed related to cognitive performance.  Brain scan studies have shown that from time to time, people with fibromyalgia do not receive enough oxygen in different parts of their brain. One possible reason is that part of their nervous system is off-kilter, causing changes in the brain’s blood vessels."

FROM DOM:  I suffer from fibro fog at times for no known reason - even after a night of "good" sleep (with meds www.fms-help.com/what.htm).  When I am fibro-fogged, like today, it does feel like my brain isn't getting enough oxygen and I can't think.  I'm a UCLA honors graduate who has days where I have difficulty assembling a salad for dinner  - it takes too many mental "steps" somehow!   I have been using oxygen drops http://neveranoutbreak.com/oxygen.php?partner=FM5H1PDB in my drinking water for a year now, and that helps greatly (staying alkalized helps the brain stay more oxygenated).  I also discovered years ago that Peace and Calming, an essential oil, www.youngliving.com (sponsor #905788) clears my brain so that I can function better.  Essential oils use the olfactory system to affect the limbic portion of the brain - see www.fms-help.com/oilsstore.htm.  Without these 2 helps, I really don't know what I could do to improve it.  Would be interested to know what others have found to help with "fibro fog."  Some days I feel completely "normal" (how EASY those days are!!!!)  But once again, I don't know why some days I feel "normal" (or perhaps I should say "nermal" like Garfield....haha), but other days I am "fogged".  Write dombush@bellsouth.net with comments.

16.  PHYSICAL SIGNS OF CAREGIVER STRESS

http://www.caregiverstress.com/2010/04/physical-signs-of-caregiver-stress/

17.  SO TRUE!

"The happiest people don't have the best of everything, they just make the best of everything they have."

18.  PEACE & CALMING

FROM DOM:  I have had fibromyalgia, chronic fatigue and immune dysfunction syndrome, myalgic encephalomyelitis since 1982 (www.fms-help.com). Over the past 28 years, I've found various ways to manage the sleep disorder, pain, fatigue, muscle stiffness and depression. Several essential oils help me - most remarkably Peace and Calming for fibro fog (brain fog). It's hard to describe to those who don't have this illness, but there are times when my head feels like it is exploding and my brain is on fire. This is accompanied by utterly debilitating fatigue and a bodily misery that is unexplainable and almost unendurable. Cognitive (mental) tasks are hopeless while these symptoms are going on. It is nothing like a normal headache, a migraine, or a sinus headache. Meds won't touch it. Rest doesn't help. It can come out of nowhere and last for days. The only thing that relieves this state of misery for me is Peace and Calming! I put 4-5 drops in the palm of my hand and lie down (More like collapsing when I am in this debilitated state). I apply Peace and Calming to my temples and brain stem. I rub the rest into my palms, place them over my nose and inhale deeply several times. Then I move my hands gently over my face (avoid eyes), shoulders and body, applying the oil like a veil. The horrible sensation in my head and the torturous fatigue is gone in about 10 minutes and I am able to think and function again! It is miraculous! What a blessing! Peace and Calming also helps my travel fatigue while riding in a car. I have to wear dark sunglasses to keep my brain from becoming overloaded and shutting down from the constantly moving images entering my field of vision. (CFIDS/ME is characterized by damage to the central nervous system--the brain--which results in dysfunctions and damage to many of the body's vital systems and a loss of normal internal homeostasis.) I put a few drops of Peace and Calming on a cotton ball and place it in the A/C vent in my car. Amazingly, my mental and physical fatigue dissipates. My only theory as to why Peace and Calming helps is because it affects the limbic portion of the brain through the olfactory (sense of smell) system. Researchers are investigating the possibility that a malfunctioning hypothalamus gland in the brain may be the cause of FMS/CFIDS/ME. There is no known cure (magic bullet) for this illness--scientists are not even sure of the cause, although it may be viral. Strangely, although Peace and Calming restores my mental function and energy when I am depleted, it also helps me relax and calm down when my system is too hyped up. Perhaps this oil restores or balances the function of the regulatory glands in the brain, or maybe fights viruses that are interfering with their function?? I don't know. I am not a doctor! I have recommended Peace and Calming to others, and some have told me it helps them with insomnia. Most people with FMS/CFIDS/ME suffer from a sleep disorder. Mine is severe, requiring sleep meds for the past 20 years. Peace and Calming helps me calm down for sleep and relax. There are other oils that help me - Melrose and RC for infections, Lavender for relaxation, Thieves for anti-bacterial air freshening, Peppermint and/or Di-Gize for indigestion, etc., but I must say that PEACE AND CALMING IS MY FAVORITE OIL SO FAR AND ABSOLUTELY NECESSARY FOR MY WELL-BEING. I don't know if it will help others the way it helps me, but I need this in my arsenal of weapons against debilitating FMS/CFIDS symptoms. - Dominie Bush www.youngliving.com (sponsor 905788) 1-800-371-2928

18.  CANCER'S FAVORITE FOOD

http://articles.mercola.com/sites/articles/archive/2010/08/27/warning--fructose-feeds-cancer-cells.aspx

19.  KANGEN WATER

Request from a reader:

"If anyone has tried Kangen water, please email lferree26@comcast.net to tell of your results, good or bad."

FROM DOM:  Here's some info about Kangen water http://aboutkangenwater.com.  The machine produces a highly alkaline, anti-oxidizing water.  (I personally use oxygen drops http://neveranoutbreak.com/oxygen.php?partner=FM5H1PDB (recommended by a reader) in my drinking water to make it more alkaline.  It has been most helpful to me since August 2009.  Acid causes disease and pain.)

 20.  FMS/CFIDS - A COMPLICATED ILLNESS

From a reader--

"I'm reading 'From Fatigued to Fantastic' by Dr. Jacob Teitelbaum.  All the hormones, supplements, drugs, etc. - this is the most complicated disease protocol I have ever seen."

FROM DOM:  Years ago I read Dr. T's list of nearly 300 protocols he uses to manage his patients with FMS/CFIDS - they are posted on his site.  I was already familiar with most of them, could see the rationale behind his choices, and had tried many of them already, based on my personal research since 1982.  A list of things I find helpful is at www.fms-help.com/what.htm.  Additionally, I have 100 Tips for Coping with Fibromyalgia and Insomnia at www.fms-help.com/tips.htm.  (See what I mean about complicated???! - there are 100 tips, not just 5 or 10 like other "normal" illnesses!  FMS/CFIDS is complex and multi-faceted, not to mention baffling.   I could easily have written 500 tips, but chose instead to write this newsletter to share useful and intriguing information that comes my way with fellow fibromites.)

Well, that's all for now! It will be an exciting weekend with the "Homeland" musical production at church. Everyone in the choir and orchestra will be dressed as famous Americans of the past. I am Anne Sullivan (Helen Keller's teacher) and play the organ. We had a dress rehearsal last night and it was AWESOME!!! It will be a wonderful program celebrating America as a nation of immigrants and patriots (I think of my dear dad!)

Please take good care of yourself! 

'Til next time,

Dominie Bush

www.fms-help.com

dombush@bellsouth.net

II Corinthians 1: 4 - "[God] 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.

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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.