DOM'S NEWSLETTER

www.fms-help.com

OCTOBER 25, 2010

A Christian-based newsletter about Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E.) - sharing thoughts, research and experiences.

FIBRO STORY       CFIDS STORY       INSOMNIA STORY        HELPFUL THINGS I USE       PREVIOUS NEWSLETTER       ARCHIVES    

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

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1.  READERS WRITE

"Fibromyalgia is ruining my life."

"You are reaching out to us all, once high achieving people, now just struggling to get through each day, and are a dear friend in a life of much suffering and loneliness." 

 

2.  SLEEP STUDIES

Reader 1--

"I am a fellow fibromite for 10 years now.  For me, no sleep and muscle pain are my two biggest enemies.  I had a sleep study done last month and what they told me is I do reach REM Sleep  but have lots and lots of Alpha intrusions during the night.  Alpha intrusions are our "AWAKE" brain waves.  They asked me if I was having a lot of pain.  When I told them I had fibromyalgia (which I did not tell them before hand) they said they see this a lot with people who are in chronic pain.  All they could offer me were the standard anti-depressants, benzodiazapenes, or hypnotics which just don't work for me.  They cause many more problems for me than they solve.  Just wanted to let you know my experience with a sleep study."  

Reader 2--

"I just read your newsletter www.fms-help.com/101810.htm and noticed a person asking about sleep studies.  I had two of them done and they both showed that I had no sleep apnea or any of those problems, but that I do not get the deep delta sleep due to constant intrusions of alpha waves that bring you out of delta sleep and almost but not quite wake you up.  The problem is they have no answers for this problem so when they wanted to do a third study on me I refused.  Until they have something to help with the problem, I am not going through the anxiety of having the study done as it is so hard to sleep with all of that stuff attached to  you.  Most FM patients have this same problem of delta sleep being interrupted by alpha waves.  It has to do with an overactive sympathetic nervous system and an underactive parasympathetic nervous system."

Reader 3--

"I had a sleep study done but unfortunately, they mixed up my results with another woman patient that was there and my doctor had tried to have them correct it but they would not so it turned out to not be of any use to me.  Their recommendation for this lady was to stop smoking and drinking alcohol and to lose weight.  I am underweight and do not drink nor do I smoke.  My doctor said insurance would not pay for a 2nd sleep study so there was nothing further I could do."
 
Reader 4--
 
"I have had a few sleep studies.  The only thing that I was told was that I did not progress past stage two.  Hence I imagine, the reason I am incredibly tired ALL the time.  I was not given any sort of "remedy" for this.  So I am sorry to report to those who were wondering, again.....the magic bullet.....does not exist.  What I have shared, was the only consistency in the studies."
 
FROM DOM:  My insomnia story is at www.fms-help.com/insomnia.htm.  A list of things I've tried for sleep is at www.fms-help.com/sleep.htm.  A list of things I use now (and I am able to get restorative sleep nearly every night) is at www.fms-help.com/what.htm.  I also have a job where I go in late and work late.  I am NOT a morning person.

 

3.  MORE WAYS TO ERADICATE BEDBUGS

From a reader--

http://www.snopes.com/inboxer/household/bedbugs.asp

 

4.  TMJ

From a reader--

"Just read the post on TMJ www.fms-help.com/101810.htm and the accompanying link to treatments.  Just want to share that my TMJ cleared up completely wiith just a few acupuncture sessions.  This was about 7 years ago and it has never returned."

 

5.   SHARE & RATE TREATMENTS FOR FMS, CFS, ETC.

From Mackenzie Bruce--

http://www.healthetreatment.com

 

 6.  HEADACHES

From a reader--

"My Headache Cure:  In my desperation with headaches, I hit on an Internet web site about oil swishing - an ancient Ayurveda practice.  This involves swishing Sunflower or other recommended oils in your mouth for 10 to 20 minutes daily & spitting the mixture out & rinsing the mouth with warm water.  My 5-year headaches that were untouched by any medications have been gone for about a year.   I do this during my morning shower.  I have done this oil swishing for about 2 years now.  The incredibly many good side effects include better dental health, reduced upper respiratory bacteria and under-the-tongue absorption of omega 3 oils without the fat ingestion.  It does take about six months for some benefit to be felt and I can't believe how good I feel now and this simple low-cost treatment has no adverse effects."

 

7.  THE ENCOURAGING WORD

From our plumber--

"Some people make cutting remarks, but the words of the wise bring healing.

(Proverbs 12:18 NLT)

 

8.  THE HUMAN CAMERA (THE BRAIN)

From a reader--

"Once you see this, you will be blown away.  If you have never seen before, you are in for a treat!  Some of us wonder what the best computer is in the world - it's got to be a brain. THIS MAN IS KNOWN AS THE 'HUMAN CAMERA'!  See http://video.stumbleupon.com/#p=0k4lsi1dql

FROM DOM:  You have GOT to watch this video clip!  It is the MOST INCREDIBLE THING I'VE EVER SEEN!!!!!  IT'S AMAZING HOW GOD HAS DESIGNED SOME PEOPLE'S BRAINS!!!   BTW, 20 years ago, I knew an autistic man at church.  He was about 45, totally blind, rocked back and forth, and said nothing.  Everyone sort of avoided him, except to say hello, not knowing how to relate.  One day our pastor called this man to the front of the church and asked him to play the piano!  We all thought our pastor had gone crazy!!!  Amazingly, this man played about as well as any trained church pianist.  Then the pastor asked those in the congregation if they knew the DAY of the week they were born.  He said if we would call out our birthday, this man could give the DAY of the week we were born.  After about 10 times of total accuracy (it would take him a few seconds to compute), a lady said, "Pastor, he is incorrect about mine.  I was born on a Tuesday."  The autistic man tried again and slowly answered again in his unique voice, "It was a Thursday."  The lady insisted he was wrong.  A few minutes later, when he was giving the day of the week for someone else, this lady blurted out, "Pastor!!  He is RIGHT!  It WAS a Thursday.  I was born on Thanksgiving!!!"  This man had an onboard perpetual calendar!!!  When he returned to his seat, our pastor said, "The point of all this is that I want you to never judge a book by its cover."  I have never forgotten this lesson!  "I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works..." (Psalm 139:14)

 

9.  TREATMENTS FOR XMRV?

From a reader--

"Has anyone been able to DO anything about FMS or ME once they found out they had the XMRV retrovirus?"

FROM DOM:  Many readers have asked this same question.  Research is still in its infancy.  However, some are trying anti-virals.  See Phoenix Rising http://aboutmecfs.org/Trt/XMRVTreatment.aspx about possible XMRV treatments.  It is a very inclusive site.

 

 10.  SUFFERING

Reader 1--

"I especially liked your explanation of the book of Job www.fms-help.com/101810.htm.  Best, most concise explanation I have heard.  Thanks for sharing this insight!"

Reader 2--

Article from www.crosswalk.com--

Is Suffering Inevitable?  
Shawn McEvoy

"For it is better, if God should will it so, that you suffer for doing what is right rather than for doing what is wrong."
1 Peter 3:17, NAS

Suffering. It's not standard daily devotional fare, because let's face it, usually we want to begin or end our day being uplifted, or even better, lifting up God, rather than focusing on our pains and problems.

But there's the rub... we all have pains and problems. Christian and non-Christian. Lifelong disciple and baby believer. Red and yellow, black and white. Everyone, from the moment he or she was born, has struggled, tried, failed, hurt, sinned, misunderstood, and reacted. Humanity shares a true brotherhood over suffering, one that we might understand a lot better if suffering weren't also so relative. By which I mean, one person's issues may sound simple, easy-to-solve, even petty to another. "That's nothing compared to what I've had to endure!"

But the fact is, your sorrows and difficulties are real to you. It's one reason why I'm no fan of when people say a certain place or time in their lives isn't "the real world," as if the spot they are currently tucked away at is immune from any degree of difficulty.

Suffering is very real, and there's certainly no reason any Christian would expect life to be otherwise. We purport to follow a "Suffering Savior." His stripes have healed us, and wow do we seem to feel them sometimes, which is as it should be, as we deserved them instead of Him. If we agree that no person but one - no matter where they lived or how easy or hard they had it - has escaped sin's corruption, then how much more must we agree that truly NO person has escaped suffering?

Look at what Peter suggests in today's verse: you can suffer for doing good, or you can suffer for doing bad. By extension, some of the problems in your life may be a result of your own rebellion, while other hurts may naturally result from walking so closely with Christ that you ache at the injustice and hardship around you, with the world despising and persecuting you.

In the classic allegory Hinds' Feet on High Places, Much-Afraid journeys with companions named Sorrow and Suffering, and these two assist her in her climb up the Injury Precipice, which is a part of her transformation into "Grace and Glory."

The same is true for you. Your sufferings have informed you, educated you, helped you along in your journey. You may despise them, but they are yours. And they will be with you whether you are doing right, or not. Of course, the nature of them will be quite different.

There may be one way, though, to avoid suffering. There's a third option, left out here by Peter, but not left out by John in the Revelation. It's the lukewarm response to life, the do-nothing approach. This is the approach that cocoons itself off from life and all of its pain. And make no mistake, "Life is pain, Highness. Anyone who says differently is selling something," says that famous theologian the Man in Black in The Princess Bride.

You may not feel anything from inside a cocoon; in fact, it may be an abundance of pain and suffering that forced you in there. But remember, no creature that cocoons itself is intended to stay locked up forever. The point is to be rested, healed, matured, transformed. To become more beautiful, useful. Even the emerging process itself carries a degree of struggle, but one that, if the insect did not go through itself, would leave it too weak to fly.

So be lifted up in your suffering today.

It is a companion.

It is designed to transform you.

It gives you a share in the inheritance of Christ and the brotherhood of humanity.

And it gives you empathy, which gives you every excuse for ministry.

Intersecting Faith & Life: 

Make it your goal to partake, as much as possible, only of the brand of suffering that comes from doing what is right according to God's Word. 

 

11.  LACK OF SLEEP CAUSES WEIGHT GAIN

http://articles.mercola.com/sites/articles/archive/2010/10/20/sleep-more-lose-weight.aspx

FROM DOM:  No wonder so many people with FMS/CFIDS struggle with being unable to lose weight.  Our sleep disorder sets us up for failure - not to mention the side effect of meds is often weight gain.

 

12.  XMRV FOR DUMMIES

From a reader--

http://www.forums.aboutmecfs.org/entry.php?614-XMRV-A-simple-explanation-of-XMRV-research-so-far

FROM DOM:  This is an EASY TO UNDERSTAND explanation of the XMRV retrovirus and CFS/ME.

 

13.  "WHEN I AWAKE"

Got this devotional from a reader, written by Joni Eareckson Tada, who is a quadriplegic - www.joniandfriends.org (used with permission by Joni and Friends International Disability Center) --

When I Awake

"And I - in righteousness I will see your face; when I awake, I will be satisfied with seeing your likeness."
- Psalm 17:15

I have to confess. I have often wished that I could just die. To close my eyes and wake to the sight of my Lord and the sound of angels has consumed my thinking on numerous occasions. Especially when I get fatigued or forced to bed with pressure-sores.

David, the psalmist, was no stranger to the desire to die. But his words, unlike those who promote euthanasia, are guarded. They are carefully crafted to delete all thoughts of death for the sake of escape: "And I - in righteousness I will see your face." There is no way I'm going to end my life sinfully just so I can behold God. Such a thing is contradictory. I must be righteous in my death as I am in my life.

"I will be satisfied with seeing your likeness." I have to realize that no matter how much peace or contentment I feel on this earth, I will not be satisfied until it is my time to die. Our earthly life in Christ is meant to be one of discontentment. Such was Paul's confession when he debated the pros and cons of life. His conclusion, and that of David's, was to choose life at all costs in order that Christ and the face of God would be gained:

"For to me, to live is Christ and to die is gain" (Philippians 1:21).

Lord, I want to be with You. Now. I confess it. And I confess my reasons are not always righteous. Too often they are because life here is hard. Make my desire for heaven conform to the face of Your will. Whether in person or in faith, let Your face be my stay, my life's choice.

Taken from Diamonds in the Dust. Copyright 1993 by Joni Eareckson Tada. Used by permission. Zondervan Publishing House, Grand Rapids, Michigan 49530

 

14.  MYOFASCIAL PAIN SYNDROME (MPS), RSDS & "BROKEN BRAIN"

From a reader--

"I can't concentrate long enough to read all of your story www.fms-help.com/fibro.htm.  You describe muscles and nerves feeling inflamed and muscle gelling.  My muscles over my back and whole thoracic area are in constant spasm.   i certainly have all the things you describe that you had  including being unable to reach into a cupboard without experiencing severe pain for weeks.  I have not been able to do this or pull drawers out to reach into them.  my clothes are lying across the top of drawers.  when i try to hang them up , my muscles are so tight my muscles feel like they are tearing - it causes severe pain and constant recurring rib dysfunction, where the rib joints get "stuck" and stab into me causing extreme pain and further musculoskeletal dysfunctions in my neck, thoracic and lumber spine.  I go to a musculoskeletal Dr who uses very gentle muscle relaxtion techniques to mobilise my  ribs  ...his treatments are very helpful , but until I can get my muscles and fascia to relax, it is recurring.  I am so stiff and sore and my nervous system is on "full throttle".  Just burning all over, and I startle and jump at the slightest noise.  More than an hour in a car i have to lie back with eye mask and ear plugs on and when I get to destination ....if I go an further than this i am totally exhausted and have to shut myself in a dark and quiet room for days to recover.  My mild traumatic brain injury caused this, the filtering system in my brain is broken and it cannot filter out the constant stimulus of roadnoise, visual movement of oncoming cars, even the white lines on the road and power poles seem to all come at me and my brain and nervous system is overwhelmed with information which is very distressing and fatiguing.   A normal  brain uses a lot of its energy filtering out background noise and visual moving stimulus so the brain is not overwhelmed with constant information.  It sound as tho after you worked in a toxic mould building www.fms-help.com/mold.htm, that the mold has had a neurotoxic effect on your brain, much like a traumatic brain injury does.  Once the osteopath triggered off all the constant fibro pain, my hypersensitivity to noise, bright lights and visual moving stimulus became much more amplified.....now music is just noise i can no longer tolerate any lengthy or intense conversations, especially multiple conversations overwhelm me and exhaust me causing me to withdraw and lie down in the quiet and dark.....all very isolatingI was a Personal Assistant to the Chief Executive of a large electric company, an athletic and competitive golfer, dressage rider, gardener, always busy cramming as much as I could into each day.  Most of all I was a healthy, independent, supportive mother and wife.  Now I am none of these things!  Like the rest of us full of dreams, ambitions, with much left to be accomplished and experienced. this is just so hard on one's self esteem isn't it.   I will never accept this is it for the rest of my life!  I have lost nearly all of my friends, (a woman who was my best friend for over 25 yrs, was so horrible to me telling me that she just couldn't stand me anymore!  She made me feel weak and revolting .(i already feel that myself!)   I'm so sensitive to what people say...they don't understand and forget the person I used to be.  It is easy to become an "island".  At least then people can't hurt you anymore. Stress makes the pain and everything so much worse!!  The high frequency firing of my nervous system winds up even more.  Unbearable!!   I was once a cool, calm and collected person, who took things in my stride and could be relied upon to cope with anything.   now I am easily irritated, foggy brained,  jump at the slightest noise, and burst into tears  over the smallest trouble and so easily mentally and physically exhausted.   (I have had to write all of this a little at a time, over many days).   I feel so trapped and fear for the future."
 
FROM DOM:  This all sounds so very familiar in my own experience with FMS/CFIDS/ME since June of 1982.  I now use a bunch of different things that help keep me more functional - listed at www.fms-help.com/what.htm.  Dr. Devin Starlanyl wrote a book called "Fibromyalgia & Chronic Myofascial Pain:  A Survival Manual" - see http://www.amazon.com/exec/obidos/ASIN/1572242388/thefibromyaandcmA.  I have a lot of info in past newsletters about many of the subjects this reader mentions - search at www.fms-help.com/newsletters.htm.  To read a list of occupations of my readers, see www.fms-help.com/occupations.htm.  Also, here are two pertinent books I've mentioned in various newsletters:  "TOO LOUD, TOO BRIGHT, TOO FAST, TOO TIGHT" and "HIGHLY SENSITIVE PEOPLE."

 15.  "JUST A DOG"

Just a Dog

From time to time, people tell me, "lighten up, it's just a dog," or, "that's a lot of money for just a dog." They don't understand the distance traveled, the time spent, or the costs involved for "just a dog."

Some of my proudest moments have come about with "just a dog." Many hours have passed and my only company was "just a dog," but I did not once feel slighted.

Some of my saddest moments have been brought about by "just a dog," and in those days of darkness, the gentle touch of "just a dog" gave me comfort and reason to overcome the day.

If you, too, think it's "just a dog," then you will probably understand phases like "just a friend," "just a sunrise," or "just a promise." "Just a dog" brings into my life the very essence of friendship, trust, and pure unbridled joy. "Just a dog" brings out the compassion and patience that make me a better person.

<Because of "just a dog" I will rise early, take long walks and look longingly to the future. So for me and folks like me, it's not "just a dog" but an embodiment of all the hopes and dreams of the future, the fond memories of the past, and the pure joy of the moment.

"Just a dog" brings out what's good in me and diverts my thoughts away from myself and the worries of the day.

I hope that someday they can understand that it's not "just a dog" but the thing that gives me humanity and keeps me from being "just a human."

So the next time you hear the phrase "just a dog." just smile, because they "just don't understand."

Authored by Richard A. Biby

FROM DOM:  I can sure agree with this article.  Our two (rather large) chihuahuas, Buster (13 lbs.) and Cheeto (9 lbs.), give us such wonderful moments of laughter with their crazy antics and day after day of unconditional love, forgiveness and understanding.  They are such a comfort when life gets "mean."  God surely must have made canines to help us humans.  We need them.  I also LOVE cats but am severely (read: "become bedridden") allergic.  In past decades, I have had some of the sweetest cats and have loved them dearly.  Back to dogs... here's a cute little piece about Jasmine, a "chipin" (chihuahua/minpin) whom I had to give away after just a few months because I was severely allergic to the oils on her coat (from the minpin side): www.fms-help.com/Jasmine.htm.  As you can see, she was just a love!  I was able to give her to a good home (one of my music students), and it has been a perfect match for many years now.  Jasmine brings so much laughter and joy to their home and has been with them through many severe trials of life.

 

16.  EXPOSURE TO MOLD

From a reader--

I'm thinking it's exposure to Mold that got my symptoms started. I was in a new building and they were doing construction. Something I breathed in caused me to have a hacking cough that was so violent I was over the sink for a few minutes. I can't stay in the apartment for more than ten minutes without it getting me sick.Since then I've been dizzier than ever and my cough keeps returning. Plus, I've had weird neurologic symptoms, and my chest is tight.I went to a mold specialist and he said I had elevated levels of mold in my blood AND I was tested for allergies and mold is my worst allergy. So I'm convinced that there is something like asperigillosis or just some mold in my body causing a lot of this havoc.It's very nerve wracking as when I stand I don't know if I'm going to collapse I get so weak and dizzy. It hasn't happened yet, but I feel like it's close. I was actually able to get some cholestyramine (CSM) from a Lyme Doctor but haven't been able to use it regularly yet, and wont have access to it till next friday. Would you recommend going to dr. Shoemaker or should I just take cholestyramine and see if it helps? ANYWAY, you mentioned 3 things that you do that helps with fibromyalgia (which is what they think I have) one for energy, one for nervous system and one for oxygen to the brain. What are you taking? I may already be taking them, but if not I want to start so that I stop feeling so terrible."

FROM DOM:  My mold story is at www.fms-help.com/mold.htm.  A list of things I use is at www.fms-help.com/what.htm.

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That's all for now!

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.