DOM'S NEWSLETTER

www.fms-help.com

My piano and guitar students at the annual fall recital last Friday night. They did a wonderful job!

OCTOBER 18, 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    

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


Be sure to see #14, 17 and 18.

====================================

1. READERS WRITE

"It is so refreshing to know and see a real, genuine site www.fms-help.com on the net."

"I look forward to your newsletters www.fms-help.com/newsletters.htm."

"Just read your site and was very impressed with your many great solutions www.fms-help.com/what.htm."

"Thank you for giving of yourself so others may be educated about this awful illness that we live with every day."

"You and your newsletters are a constant source of great info to me and the other members of the group.  Your sharing comes from your heart"

"Thank you for posting so much useful information."

"You cannot know what a blessing and comfort your newsletter is!"

 

 2.  NARCOLEPSY & FIBROMYALGIA

From a reader--

"I was sondering if my fibromyalgia could be severe enough to cause me to be so tired that I cannot sit down without falling asleep.   I have only had this in the last 2 months.   I feel tired all day but carry on with chores etc.   I just cannot imagine that fibro could be this severe to cause this sleepiness."
 
FROM DOM:  Yes, it can.  However, in my case, it was complete loss of the ability to sleep www.fms-help.com/insomnia.htm - just a horrible, nervous tiredness that never went away.  But I do hear from fibromites with excessive sleepiness.  I found this on narcolepsy: https://health.google.com/health/ref/Narcolepsy.  Fibromyalgia is a neurological disorder - it affects brain chemicals, glands and functions.
 

 

3.  NEUROFEEDBACK, PSYCHOSOMATIC THERAPY & EFT FOR FMS/CFS

From a reader--

"I have had severe FMS/CFS for at least 10 years (when I was officially diagnosed). My childhood was really horrible - trauma and every kind of abuse. Of course I've read all the studies that say that abuse is the cause of FMS and honestly it always made me mad when I read that as it implies it's only of psychological origins.  I recently read an article about neurofeedback being effective for managing chronic pain so I found a practitioner  who thankfully is covered under my insurance. She also has FMS and is a psychologist specializing in treating PTSD (I have been diagnosed w/ that also).  I have been getting treatments for about 2 months and the neurofeedback helps so much with brain fog and a lot with pain though so far the effect only lasts a few days. My brain map showed my brain is stuck in fight/flight mode all the time so we are working to find ways to calm my brain down and help me relax.  The therapist has a protocol combining neurofeedback w/ psychosomatic therapy. For those unfamiliar w/ psychosomatic therapy it basically is a type of therapy where they look at the pain in your body as a symptom of unresolved trauma or emotional issues of some kind.  You locate a specific pain and then think back to the time in your life when you first began feeling that specific pain. If there is a traumatic event or memory related to it then EFT (Emotional Freedom Technique) therapy is done to reduce the pain.  EFT is a simple technique where you tap with your fingers on accupressure points in your body to block nerve signals.  Thankfully my therapist is also a Christian (what a gift from the Lord!) so she uses lots of prayer and scriptures when we are working through my trauma memories which is very helpful.  She has also taught me several relaxation and breathing techniques based on using God's WORD.  In the last 2 months I've been able to decrease my pain medications by 50% and my depression (which is especially bad this time of year) is almost gone.  I have been amazed to discover just how strong of an effect stress has on my pain. If my pain is up to an 8 or so now I can lie down, use EFT and recite scriptures and most of the time I can get my pain down below a 5.  Also as I have worked on getting my stress down and looking up specific scriptures about trust, faith, hope, etc. and memorizing/repeating over and over I have found my attitude has gotten so much more positive (even in the midst of having bad FMS days).  It's given me such a hunger and thirst for God's word! I certainly am not saying that FMS is caused by stress or psychological issues, but I will say those things play a big role in the severity of symptoms in my opinion. I've often told my husband I feel as if "my brain and body are not connected".  Neurofeedback is supposed to help the brain and body communicate better and balance/stabilize the brain.   Here are a few links if you are interested in learning about neurofeedback  and/or EFT for FMS, CFS, and chronic pain (the techniques can be used individually or together). You can also find videos on youtube that explain how to do EFT on yourself as well as many testimonials of it's effectiveness for Fibro and CFS.

http://www.eeginfo.com/research/articles/chronicpain_1.htm

http://www.isnr.org/CBFatigueFibroAIDx.cfm
 
http://www.fmaware.org/site/News2?page=NewsArticle&id=6092
 
http://www.eegspectrum.com/Applications/ChronicPain/ChronicPainCaseStudy3/

 

4.  CFS BARBIE

From a reader--
 
 
 
"Re: Dom's newsletter www.fms-help.com/100810.htm - topic 22:  I think she is CFS/FMS Mom Barbie - in her 20's or 30's.  This looks like such a picture of my life when my kids were little and I was nearly bedridden.  I'd have been in PJ's and certainly no make up and a much messier hairdo."
 
 
 
 
4.  GENETICALLY MODIFIED FOODS
 
http://articles.mercola.com/sites/articles/archive/2010/10/09/jeff-smith-interview-gmo-week.aspx - Banned in Europe.
 
 
 
6.  TIPS FOR COPING WITH FIBROMYALGIA
 
From a reader--
 
"I have struggled with FMS for at least 20 years. I did make major lifestyle changes and have managed to live with it best I can, at times feeling like I do not even suffer with it anymore. However, flare ups keep reoccurring just when I think I have it solved.  I have only read your 100 tips www.fms-help.com/tips.htm so far and want to thank you for such a wonderful website.  It is easy to become a little distressed by it all at times, as we are generally very motivated, positive peopleI admire the site you have put together, to show others how we can live with this. It has taken many years of much trial and error...many times of so much frustration and tears in the discovery process of what our bodies respond to.  Your tips do work. You have saved many experiencing alot of unwanted pain if they do follow your tips.  Obviously, some respond to treatments better than others but everything you have written is 100% on the mark with the symptoms and what I also know works from experience.  I also believe there is a logical explanation of what we feel. It will be discovered and until it is, these tips will help many people live a much fulfilling life."
 
 
 
7.  BLOOD COAGULATION & FMS/CFIDS
 
From a reader--
 
"Re: coagulation, item #2 at www.fms-help.com/100810.htm - that sounds to me like a probable theory. My mom has CFS/FMS and we think my Grandmother did too.  Both of them had blood clots that caused pulmonary embolism when they were in there early 60's.  Also it could explain why we have circulation problems and poor oxygen metabolism."
 
FROM DOM:  OPC'S can help!  Write dombush@bellsouth.net for info!
 
 
 
8.  LOW DOSE NALTREXONE & O2 MACHINE
 
From a support group leader--
 
"I have taken naltrexone for cancer for 7 years and it works great. you need a prescription from any doctor. it costs less than $30 per month and it really helps to slow down all the symptoms and protect you from cancer and autoimmune problems.  several of the people in the group have developed rheumatoid arthritis. they were unable to take the naltrexone because they were on morphine-based pain meds. this is the only contraindication that interferres with low dose naltrexone. there is a website of the same name that can help you and readers get more info. also accepted pharmacies that prepare the formula correctly.  i have had several people i know that has used this medication to reverse terminal cancer; and are alive years later because of it. for the mouth sores and shingles we use l-lysine. water soluable so we take whatever works.  about your O2 machine www.fms-help.com/100810.htm, i found a man who repairs all the medical equipment in the area for the things like cpap machines and oxyegenators.  he had me get a slip from my doctor that it was o.k. for him to sell it to me. i paid $200 for a rebuilt machine.  he guarantees it 100% for one full year.  2 liters is all i use. i have done this for 5 years and feel much better for it. my medical person told me that 2 liters could not possibly hurt me in any way and may help with pain, fatigue and fog. how true.  the machines usually run 10 to 14 hours a day and last for two years.  ask the businesses that sell these machines  the name and address of the local repair guy.  tubing can be gotten off e bay or locally.  cheaper off e bay usually.  i have also been very happy with accupuncture. in five sessions she has gotten rid of the constant dizziness, night sweats, 70% of chronic nausea, 50% of the pain and a whole body twitch that was driving me crazy, the neurologist couldn't help with any medications without putting me in bed 20 hours daily.  some insurances cover. all accupuncturists are not created equal."
 
 
9.  HEADACHES
 
Question from a reader--
 
"I was diagnosed with Fibro last year. I had to quit my job :( and I have been "dealing" with all the stuff that goes along with this condition as best as I know how.  Recently the headaches have become the worst part and I don't think I can "deal " so well now.  Over the counter meds do not do anything. There are some that I can't  take as they contain caffeine and they cause tachycardia.  My Dr prescribed Percocet and I took one last night....a disaster! First my hear rate went very low and then I got the shakes and it went in the opposite direction. My husband called 911....they said my vitals were OK....my heart rate was a bit high ..I was just having a reaction to the percocet. Eventually I stopped trembling and it took the pain away..."till the morning, at least. BUT....I can't go thru the reaction again so I am back to square one.  My headache has not let up since this morning...any suggestions??"

FROM DOM:  Go to the bottom of this page and type headache in the Google search box.  I have mentioned headaches in many past newsletters - might be some good info there.  Also, if anyone has suggestions for this reader, please write dombush@bellsouth.net.

 


10.  READERS' PRAYER CORNER

Susan - "Please continue to pray for my fibro friend's daughter Megan - see www.prayersformegan.com [Recap: When Megan was in labor with her first baby in July, doctors discovered that she had leukemia, despite a perfect blood test just 2-1/2 weeks before!  She was taken to oncology for cancer treatments to save her life immediately following delivery.]  Now, in October, Megan had been doing so well after she received her brother's bone marrow, they were hoping she could go home to Ryan (her husband), and Rylee (newborn) would come home from Grandma and Grandpa's house early next week. Unfortunately, Megan's had a severe set back. Again, she's been put on a drug induced coma, in ICU. She's having difficulty getting her heart and lungs to cooperate at the same time. She has a severe infection in her lungs or heart...and Ryan went over immediately from school, and for the first time, he wasn't allowed into her room. Our friend Dianne has gotten a Run4Megan in downtown Sonora... I was planning on attending, but after having a fever of over 101-102...I checked in with my doc (waiting for 4 days...I really believed it was going away) I have bacterial pneumonia!  I'm just disappointed that I can't be there to support the women (woman) that is putting it on. Pam, Meg's mom has gone to Seattle to help with Rylee. Since Ryan is in Dental School, Rylee went back to spend some quality time with Grandma Boyack and Grandma Smith. I know you have a lot of people that you can connect with, and I know how much Pam (Megan's mom) would appreciate it. I don't know how she's doing this with her FMS. Ryan has up a Facebook page about Megan at http://www.facebook.com/pages/Prayers-For-Megan/119177548129242."

 

 11.  VITAMIN D GONE WILD - THE GOLDILOCKS APPROACH
 
From a reader--
 
http://just-me-in-t-health.blogspot.com/2010/10/vitamin-d-gone-wild-goldilocks-approach.html
 
FROM DOM:  Much discussion about Vitamin D in past newsletters www.fms-help.com/newsletters.htm.  Vitamin D3 is the one we need.
 
 
 
12.  WHY SUFFERING?
 
FROM DOM:  I have been asked by a reader why God allows suffering.  This is an age-old question: Why do bad things happen to good people?  The answer is: WE DON'T KNOW!  The entire book of Job (Bible, O.T.) covers this complicated subject in great depth.  We hear from Job as he endures unbelieveable suffering and the hurtful comments from his well-meaning, but misguided, friends.  Job is chronologically the oldest book in the Bible, so the question of evil and suffering is ancient and still unsolved.  One thing I learned from Job is to be a better friend to my afflicted friends.  Job's friends sound like the "health and wealth" religious crowd today (that is, until tragedy strikes their own family!)  What I take away from Job is that I can remain a faithful supporter of others who are going through humanly inexplicable tragedies - without moralizing, judging or trying to figure it all out.   We are not God - and that actually is Job's final conclusion from his suffering after long, intricate discussion with his friends.  Job kept maintaining his innocence and they kept accusing him of sinning and bringing these horrible tragedies upon himself somehow.  (Mean friends.)  Of course, at the beginning of the book, we learn that GOD said Job was PERFECT and UPRIGHT.  That's a pretty good recommendation, considering the source.  Job's tragedies did not happen because of his sin, but due to the lack of it - and God's allowing Satan to test Job to prove something to Satan - that God's servants will NOT curse Him when adversity strikes.  As Job said, "Shall we receive good at the hand of God, and shall we not receive evil?  In all this did not Job sin with his lips." (Job 2:10)   Later, he said about God, "Though he slay me, yet will I trust in him." (Job 13:15)   Job chapters 1 and 2 are fascinating, insightful, and encouraging reading for the righteous who suffer!
 
 
 
13.  GOD'S DEFINITION OF FAMILY
 
From a reader--
 
http://justmeintchristian.blogspot.com/2010/10/not-gods-definition-of-family.html
 
 
 
14.  MEET THE WHITTEMORE-PETERSON INSTITUTE!
 
FROM DOM:  This short video is SOOO worth watching!  http://www.youtube.com/watch?v=KcQ2aXIIcao&feature=related.  You will meet founder Annette Peterson and her daughter, Andrea, who has been ill for over 20 years with M.E./CFS.  The Whittemore Peterson Institute for Neuro Immune Disease is in Reno, NV and exists to bring discovery, knowledge, and effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system , often resulting in life long disease and disability.  XMRV was their discovery in October 2009.
 
 
 
15.  BED BUG EPIDEMIC
 
From a reader--

"A bit of information that you might like to know about. We have friends here in our community and one of their sons is an Entomologist (insect expert), and has been telling them that there is an epidemic of bed bugs now occurring in America.  Recently I have heard on the news that several stores in NYC have had to close their doors due to bed bug infestation problems, as well as a complete mall in New Jersey.

He says that since much of our clothing, sheets, towels, etc. now come from companies outside of America, (sad but true), even the most expensive stores sell foreign clothing from China, Indonesia, etc.  The bed bugs are coming in on the clothing as these countries do not consider them a problem. He recommends that when you buy new Clothing, underware, socks, sheets, towels, etc. that you bring them into the house and put them in your clothes dryer for at least 20 minutes.  The heat will kill them and their eggs.

DO NOT PURCHASE CLOTHES AND HANG THEM IN THE CLOSET FIRST!

It does not matter what the price range is of the clothing, or if the outfit comes from the most expensive store known in the U.S.  They still get shipments from these countries and the bugs can come in a box of scarves or anything else for that matter. That is the reason why so many stores, and many of them clothing stores have had to shut down in NYC and other places. All you need is to bring one item into the house that has bugs or eggs and you will go to hell and back trying to get rid of them. He travels all over the country as an adviser in prevention and helps many stores after they had the problem."

FROM DOM:  My husband has been a pest control tech for 24 years now, and he says that only HEAT will kill bed bugs, and even if you eradicate them from your home, they can easily reinfest your home by hitch-hiking in on visitors or objects you bring in.  What a nightmare!  Reminds me of the plagues that God brought on Egypt because the Pharoah would not free the Israelites from slavery.  God used gnats, flies and locusts!!  Amazing what misery such small creatures can cause!  My mom (89) said that in the 1920's in Michigan they used kerosene to kill bed bugs!  Kerosene is not as flammable as gasoline, but just as dangerous.   (I guess nobody smoked in bed back then!)

 

16.  KILLER BEES

FROM DOM:  On the bug theme, just wanted to mention that on our local TV news this week, they showed a huge nest of African killer bees - they are finally here in the Northeast Florida.  These bees swarm their victims, sting them to death and continue stinging even after the victim is dead.  I pray that no one will be hurt by these horrible bees!

 

 17.  GAMMARETROVIRUS THOUGHT TO BE CAUSE OF CFS
 
From Dr. Mercola's site--
 
http://articles.mercola.com/sites/articles/archive/2009/11/12/Gammaretrovirus-Thought-to-be-Important-Cause-of-Chronic-Fatigue.aspx
 

"XMRV is a human gammaretrovirus — the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted).

That would have been news enough, but there was more. XMRV had been discovered in people suffering from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years. For sufferers of this disease, the news has offered enormous hope. Being seriously ill for years, even decades, is nightmarish enough, but patients are also the targets of ridicule and hostility that stem from the perception that it is all in their heads. In the study, 67 percent of the 101 patients with the disease were found to have XMRV in their cells.

Many people don’t realize how severe this illness can be. It is marked by memory and cognition problems, and physical collapse after any mental or physical exertion. The various co-infections that occur only make matters worse. Many patients are bedridden. And recovery is rare. A significant number of patients have been ill for more than two decades.

It is estimated that more than a million Americans are seriously ill with the disease. (Not everyone infected with XMRV will necessarily get chronic fatigue syndrome — in the same way that not all of the 1.1 million Americans infected with HIV will get AIDS.)"

 

18.  HOW TO GET TESTED FOR XMRV

I got this from a reader who was tested for XMRV - she will know results in 5-6 weeks--

"The test kit can be ordered at www.vipdx.com. You print out the XMRV test kit form, fill it out with a $65.00 deposit and send it to VIP DX in the mail. Then they will send you the Test kit. Read over it very carefully!! Bring it to your doctor and maybe print something out about XMRV because most likely your Doctor will have NO CLUE what this test is or what XMRV is. Once the doctor orders the kit you will need your blood drawn and then  FED EX EXPRESS OVERNIGHT the kit to VIP DX (I would bring the kit to FED EX yourself to make sure that  it is sent out in time.).. IT must be sent out NON FROZEN and Monday – Thursday only and not received on a Holiday!!! They must receive the kit within 24 hours of the blood draw! Once the test is done it takes several weeks for your doctor to get the results. I called VIP DX and they are sending me a release form to fill out so that they will send me the results too and not just my doctor. The fee for both XMRV tests is serology & culture is over $500+ (I cannot remember the exact amount) if you get both tests at the same time which I would recommend because you get a discount to do them both at the same time. If you do them both separate it is 450 for the culture and 250 for the serology (antibody test).  I just did the culture and wish I would have done them both.  The $65.00 deposit fee is do up front and the rest will be billed after they get the  results from your test.  I believe that  XMRV or other MLV‘s are probably the main  culprit to this sicknesses and that other viruses such as HHV-6 (which I have) and EBV as well as many other infections (Lyme, chronic yeast, etc., etc.) are either reactivated or present because of immune deficiency. Or we could have a genetic immune deficiency and all these infections could be secondary to the immune deficiency.  I’m following this [XMRV news] very closely.  I have four daughters that could potentially have this too and if my test is positive I am going to start having them tested as well as my mom!"

FROM DOM:  If you are new to the XMRV/CFS/M.E. connection, click on www.fms-help.com/XMRV.htm to learn more. 

 

19.  SPINAL TAPPING FOR ME/CFS

From a reader--

http://www.ei-resource.org/columns/phoenix-rising/proteins-on-the-brain:-spinal-tapping-for-cfs/ -

FROM DOM:  It really is "ALL IN OUR HEAD!"   This article shows that CFS is a true neurological disorder - not a psychological one (as we all know!)

 

20.   IS THERE A CURE FOR XMRV?

FROM DOM:  Many readers have asked me that if they take the XMRV test and it comes back positive, then what is the cure?  Answer: Presently no one knows.  Research is in its infancy, but I've heard that some AIDS anti-virals are being tried, but that we should not let a doc prescribe anti-virals "willy nilly," because if you use the wrong ones and become immune to them, then it will mess up your immune system.  As you can see by reading this, I am not a doc or a medical expert.  I am just a patient (CFS since 1987), having suffered in many ways from this illness www.fms-help.com/fatigue.htm but doing well now for about a year using things on my list at www.fms-help.com/what.htm.  Each person is different.

 

21.  TINNITUS IS RINGING IN THE BRAIN

FROM DOM:  My dearest friend from childhood just snail-mailed me an article from Discover Magazine (Special Anniversary Issue 1980-2010 - Thirty years that changed everything, pages 22 and 24) about tinnitus (ringing in the ears - something I have suffered with for decades.)  Researchers have found an auditory network running throughout the brain.  This is why traditional tinnitus "remedies" for ears don't work very well.  However, there is a new approach now.  See "Cured of the Rings" at http://discovermagazine.com/2002/sep/breakcured.  Also see http://blogs.discovermagazine.com/80beats/2009/12/29/specially-modified-music-can-rewire-brain-alleviate-tinnitus/.

 

22.  HELP FOR TMJ

From a reader--

"Have you ever suffered from TMJ?  It is very painful.  Other than getting a splint made from a dentist (out of pocket expense) do you have any suggestions that may help?  I can hardly chew my food!!"

FROM DOM:  Yes.  For many years.  I wore a mouth splint at night.  My teeth kept shifting around for some reason.  Dentist has to grind them down, etc.  I have been told that I have no cartilage left in my jaws.  Don't know what actually cured my TMJ symptoms, but it's been gone for about 15 years now.  Here's an article that discusses TMJ from someone who also has fibromyalgia, and lists some things that can help: http://www.ctds.info/tmj.html.  I think as I got stronger physically with good supplementation that this had a lot to do with the improvement.  My list of things I use is at www.fms-help.com/what.htm.

 

23.  SLEEP STUDY

From a reader--

"Have you ever had a sleep study done? Have you heard of any 'consistency' between studies done in folks with fibro? Perhaps, in 'wave'  type or frequency or etc.?"

FROM DOM:  I never did back when I had insurance coverage for it.  Wish I had now!  My insomnia story is at www.fms-help.com/insomnia.htm.  It began when I was 16.   I would be curious of the findings of anyone who has had a sleep study done.  Please write dombush@bellsouth.net.  Basically there are 4 levels of sleep.  They say that fibromites don't get to the deepest level due to alpha wave intrusions.  There has been a lot of info regarding sleep and insomnia in my past newsletters www.fms-help.com/newsletters.htm.


24.  HEALTHETREATMENT.COM

FROM DOM:  Interesting new site where you can type in your health condition and see available treatments, etc.  www.healthetreatment.com.

 

25.  THE ENCOURAGING WORD

Our plumber, Alan, sends out an encouraging Word every day--

“Work willingly at whatever you do, as though you were working for the Lord rather than for people." 

(Colossians 3:23 NLT)


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.