DOM'S NEWSLETTER
December 28, 2007
 
A compassionate and informative newsletter for people with Fibromyalgia (FMS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME).
 
TOPICS ARE IN PURPLE.  MY COMMENTS ARE IN TEAL.
 
There are SOOOO many interesting topics in this issue! Scroll down to read.
Don't miss:
#2 - EMOTIONAL SENSITIVITY & FIBRO
#4 - DOM'S NEW SUPPORT GROUP
#8 - STRESS CAUSES FIBRO?
#10 - BURNOUT
#19 - DOM'S UPDATE

 
1.  READERS WRITE
 
"I am so amazed with your website www.fms-help.com and all of the useful info."
 
"Thank you, thank you, thank you for the Yahoo support group http://health.groups.yahoo.com/group/dominie.  How wonderful to get answers and advice from experienced people!"
 
"You have a great  site with great info."
 
"Your website is the most interesting I found on the entire internet!!  Fantastic job!!"
 
"I have spent hours at your website and could spend hours more!  Thank you for all the time and effort you have put into getting information out about FM.  It was a blessing to find your site!" 
 
"I am at the end of my rope with fibromyalgia.  My whole life feels toxic."
 
"I love your website."
 
2.  EMOTIONAL SENSITIVITY & FIBRO
From a reader--
"I have read your Fibro story www.fms-help.com/fibro.htm and it's just so sad that this story is the story of so many people.  I have been this way all my life. My mom said my feelings were so sensitive when I was a small child, that someone could just look at me and I'd cry. And, I have continued to be this way throughout my entire life. I can't handle confrontation without crying, no matter how hard I try. I cry when I'm mad, I cry when I watch something sad on TV, even my soap opera.  I get so mad at myself for doing this!  Maybe my nervous system was compromised some how before I was born. Are there tests that can be done for your nervous system to see if it is functioning properly?  Besides being able to lean on God, my husband and family have been so supportive and I know these are the reasons why I can deal with each day. I also found a company 3 years ago that I purchase my vitamins and supplements from that are very good and they also have household and personal care products that have safer ingredients so I don't have to clean with harsh and volatile chemicals. I had become so chemically sensitive. I have felt better since I made the switch to this safer store, but I still have to watch what I do and take everything in moderation."
 
 
 
3.  YEAST INFECTION
From a reader--
"About yeasty beasties.  Several years ago, I contracted THREE nosocomial infections as a result of a sigmoidoscopy.  Testing at Great Smokies Lab told Savior Doc & me just WHAT the scope did.  Reluctantly went on Cipro & Sporanox (alternating two weeks on one, one week off, & two weeks on the other.  Went toxic on that combo after four months....What did eradicate the pathogens was Primal Defense.  'Tho directions say to take three a day, I only did that for three weeks.  Then, I took two a day for another couple weeks.  Have maintained on one a day ever since & swear by that product!!!"
 
 
4.  DOM'S NEW SUPPORT GROUP
A message board for Dom's newsletter readers began on Yahoo on Dec. 7, 2007 with Christina, a newsletter reader, moderating.  As of this writing (Dec. 28), 180 readers have signed up and 500 messages have been posted.   Many readers asked me to start an online support group and they wanted to communicate with other readers.  Thanks to Christina, this is now a reality!!!  Go to http://health.groups.yahoo.com/group/dominie.  There are several options when you sign up - receive all posts sent as emails, only receive urgent messages from the moderator, receive no emails (check posts online only), or get a daily digest (all posts sent once a day in a single email).  I signed up for Daily Digest and can keep up with the posts very easily!  I recommend this option. 
 
 
5.  LOW BODY TEMPERATURE
From a reader--
"My body temp is low?about 97 on average.  Also when my temp is actually ?normal?, I feel like I am fighting a virus or something, and then I?m down for days."
Could be thyroid too?  My body temp is often low - like 97.4 degrees. 
 
 
 
6.  TYPE A PERSONALITY, FIBRO & WORK
From a reader--
"Yep, that?s me!  Type A all the way, then I get burned out, then get sick, then miss work, then deal with the stress of the guilt that my boss piles on me for needing to take a sick day and requiring me to make unnecessary phone calls from home that have suddenly become ?urgent?, therefore I don?t get the rest I need, then I come back to work to a double-load of work from being gone.  On goes the cycle.  I have a VERY UNSYMPATHETIC boss, who consistently calls in sick on an every other week basis?whether it be himself or his 16 & 18 yr old kids (can?t they stay home by themselves?)?but who become irate over trivial things when I have to stay home sick or stay home with a sick 8 year old once every couple months.  Since I had mono in 2004 which I was not allowed to take time off to recover from, it quickly progressed into fibro and every year the mono resurfaces and takes me down.  Right now I am also hating my job, mostly due to resentment from unfair treatment, and am looking for an opportunity to work from home. Do you have any recommendations where I could look?  I am NOT a salesperson, so it would have to be something that could pretty much sell itself, or maybe even something like data entry, word processing, etc.  Do you personally know anyone who is successful selling on ebay?"  
This is a good question to ask on Dom's Message Board at  http://health.groups.yahoo.com/group/dominie.
 
 
7.  HIGH TITERS & EPSTEIN BARR VIRUS
From Dom's message board moderator--
"IN DOMINIE'S NEWEST NEWSLETTER www.fms-help.com/121707.htm (Topic 12), THERE WAS A QUESTION ABOUT HIGH TITERS IN A TEST RAN ON THIS PERSON. NOT KNOWING WHAT TITERS EVEN MEANT, I RESEARCHED IT....THIS IS WHAT I FOUND--
High titers of anti-Epstein-Barr virus DNA polymerase are found in patients with severe fatiguing illness. Journal of Medical Virology 1994; 42(1): 42-6. Abstract: Forty-one patients with chronic fatigue syndrome (CFS), 76 healthy controls matched with the patient group for age range, sex, race, and socioeconomic class, and 22 symptomatic patients with seasonal affective disorder (SAD) had serum sampled for antibodies against 2 Epstein-Barr virus (EBV) replicating enzymes. Abnormal titers of antibodies were found twice as often in CFS patients as controls (34.1% vs. 17.1%), with SAD patients having an intermediate frequency (27.3%). Stratifying for disease severity sharpened the differences considerably, with the sicker CFS and SAD patients having 52% and 50% abnormal tests, respectively; more mildly afflicted CFS and SAD patients had a frequency of abnormal tests in the normal range. Antibodies to EBV DNA polymerase (DNAP) were the more sensitive of the two tests in that they were positive in all cases but one. These findings suggest that antibodies against EBV DNAP may be a useful marker in delineating a subset of patients with severe fatiguing illness for appropriate treatment trials and for monitoring their outcomes."
From a newsletter reader--
"Most FMS sufferers have high EBV titers, as most of us have had at least one bout of mono.  Many CFS sufferers (if not all) have high EBV titers and they suffer horribly with bouts of ongoing exacerbations of EB.  If you have had mono or are in the throngs of an episode for the first time, this would explain your elevated EBV 6 titer level."
 

8.  STRESS CAUSES FIBRO?
From a reader--
"I truly believe that my Fibro was brought on by Overwhelming Stress. I had always been healthy and athletic before my first episode in 2001 which lasted for 3-6 months. It was a truly stressful time where I worked and management was changing and I was relied on more than the other tellers because I knew the most and was willing to do the work. I again had a much worse episode which began in late 2003 and then stopped me in my tracks in January of 2004. I knew it was coming even before it got that bad because as with the first episode, I started having these dreams every night that I was running, constantly running from someone or something but I could not see who or what it was. During those times, the stress at my work was so bad, I was crying all the time and becoming so exhausted to the point of not being able to get up in the mornings.  I am a highly sensitive person. I get very emotional and cannot control it. I've lost relatives over the last 25 years [describes close family members]. I still have very deep emotional pain connected to both of the deaths.  I believe that the death of my [loved one] in December of 2003 was the turning point of my breakdown and returned Fibro and CFS. I couldn't control myself after that. I was in tears all day at work and I felt like I was having a nervous breakdown.  My body does not deal with extreme stress like some others can. You know, there are some who can laugh in the face of stress and go on their merry way and there are those that crumble and is devastated by it. I fall into the crumble group.  Some people's emotional bodies are just built differently than others. They have a stronger emotional center and things do not bother them as deeply as it does people like me.  It may come to light that all these emotional issues in my past have been the cause of my illness, but I was physically healthy until the stress combined with the personal issues did me in."
Me too, sister!  See my story at www.fms-help.com/fibro.htm.
 
 
9.  DOM'S CHRISTMAS CD
My Christmas CD is still available.  I play 20 Christmas carols using a Roland KR107 digital piano with many exquisitely beautiful sounds! - piano, harp, bells, violin, guitar, flute, pipe organ, etc.   I've been a piano teacher for 15 years and a church musician for 25 years www.fms-help.com/students.htm.   Read comments from newsletter readers about my Christmas CD at www.fms-help.com/CD.htm.  For information on how to obtain a copy, please write dombush@bellsouth.net.
 
 
10.  BURNOUT
From a reader--
"You hit the nail on the head with your remarks about type a's, now being burned out.  I think what this disease has done to my mental health is worse than the pain, and after 12 yrs or so, the pain just gets worse and worse.  I remember being told that this wasn't a progressive 'ailment'.  yeah, right!  I've been dx'd with major depression, since losing my job, home, spouse, vehicle, blah, blah, blah.  I know it is the same with 1000's of my new family of pain.  I'm blessed to have been taken in to live with my grown son and his wife, and at first, I could help them out with housework 'cuz they both worked.  now my DIL has fibro, too.  Looking back in her life, we can see how it slowly came on from her youth.  But now, I can't be on my feet more than 10 mins before I have to sit from the pain.  So, a type a who can't produce, throw in some pain and a pity party or two, and you get major depression. Jesus Christ is holding me together. period.  Thank you for the newsletters, Dom, sometimes I can't see the forrest for the trees.  and at least I have a better insight now into why I do get so down.  keep up the good work, girl, and God bless."
I sure can relate to all of this....and about the pity parties.  I am the world's worst!  When I've crashed (sometimes for years at a time), depression and despair set in.  It is just so hard mentally and emotionally.  Today I spoke with a very elderly friend who doesn't have long in this world.  He is a dear Christian gentleman, and when he told me that he barely has energy to get through another day, I could SOOOO understand what he meant!  FMS/CFIDS/ME is an illness where even a 25 year old can truly sympathize and understand a 90 year old!  And this reader is right - it is the grace of God keeping me going too.
 
 
11.  DETAIL-ORIENTED
From a reader--
"I have so been there and done that! I gave all I had to my last job before my Fibro and CFS took my strength, my efficiency and my job.  I have always been a very detail oriented person, sometimes to the point of obsession I must admit. I took pride in never making mistakes, I made sure my desk was neat and organized and when I had more work piled on, I worked harder to clear it off. I always took very detailed notes so I wouldn't have to ask again and again how to do something, but I was under constant scutiny from management for being that way. They would rather praise others that were slackers instead of those that did their work.  When co-workers would quit or get fired, the management team would just pile their work on the employees who was doing 3-4 peoples work already.  Then there were those nasty little slacker co-workers that really didn't care about helping out. They dodged the radar and all they only cared about getting out of there at the end of the day and getting a paycheck on payday. So...Guess who got to take up that slack?
 
The stress of it all finally became too much for me in January 2004 and I cracked. I took 3 months off work. I had to go to psychiatrist who wanted to blame it all on something that may have stemmed from a childhood experiences. I went to my regular doc and he just wanted to pump me full of anti-depressants that made me worse. At that time, I was so out of it I really didn't know why he kept asking me if I was suicidal. I only learned long after I refused any more anti-depressants that they could MAKE you suicidal! Hmmm!  I was still so bad at the end of those 3 months, I couldn't even balance my own check book. I have been disabled and unemployable since that time and I still struggle with my memory, concentration, judgement, sleeping and fatigue, weak muscles, and chronic neck pain. I cannot multi-task to save my life, I get so confused when I try doing two things at one time, I have to stop both and then just start on one thing.  Stress has been and still is my biggest enemy, and it zaps me of any strength I may have left. I try to stay away from it, but that is not always possible as you may well know. 
 
I feel so useless and humiliated at times because I am no longer capable of being that A-Type person. When I try to be, I make everything worse.  I have vitamins and supplements that I take and they keep some of the worst away from me, but miss a few days of them (like I have a few times) and I am in bed for awhile.  Well, I think I have rambled enough. I hope this helps others to know that they are not alone in their fight to get their life back. My heart goes out to everyone who has had to suffer in this way."
Wow!  This reader has said it all.  I think we are clones!  My fibro story is at www.fms-help.com/fibro.htm.
 
 
 
12.  AMITRIPTYLINE (ELAVIL) & WEIGHT GAIN
From a reader--
"This med caused me to gain 70 lbs within a 6-month period of time!  It is KNOWN to do this!!  Caution to any taking it!"
 
 
13.  MAN'S SKIN TURNS DARK BLUE
From a reader--
http://www.cnn.com/video/?/video/us/2007/12/19/haagenson.blue.man.kfsn 
This was on CNN - a man's skin turned dark blue from drinking or applying home-made colloidal silver.  The condition is called argyria and is considered rare - see http://en.wikipedia.org/wiki/Argyria.
 
 
14.  LYRICA
Reader 1--
"In August I had a surgical procedure done on my lower back (herniated disc) and I was given that new approved drug, "Lyrica"  for Fibromyalgia, works wonders for those sore painful muscles. It was approved around June or July this year.  I just couldn't believe a difference it made in my body. I don't want to live again without it. So far I've not any side effects."
 
Reader 2--
"I've tried Lyrica.  Made me feel "drunk" and gave me weird tingling pain.  Also several different anti-depressants.  All the ones I've tried have horrible side effects on me, so I'm staying away from those."
 
 
15.  SLEEP QUESTION
From a reader--
"Do you experience the following: the days that follow after the nights I sleep well I am often more tired than the days that follow after a night where I did not sleep well?"
YES!!!!  And isn't that strange?!  I sometimes think it's a virus affecting my hypothalamus gland (which regulates sleep, circadian rhythm, etc.)  See www.fms-help.com/insomnia.htm and www.fms-help.com/sleep.htm.
 
 
16.  ALFRED BLASI'S "RECUPERATION" FORMULA
From a reader--
This mineral mix has to be sent from Spain.  It has helped some with fibromyalgia.
 
 
 
17.  CHEMTRAILS MAKING PEOPLE SICK
From a reader--
"I GET INTO READING THE SITES "THEY" DON'T WANT YOU TO KNOW -  IF YOU HAVE NEVER HEARD OF CHEMTRAILS FROM THOSE HIGH FLYING PLANES - MORE INFO COMING OUT ALL THE TIME.   BARIUM ETC IN CHEMTRAILS - THEY WANT TO MAKE EVERYONE SICK.  http://imageevent.com/firesat/strangedaysstrangeskies?z=3&c=4&n=1&m=-1&w=4&x=0&p=14."
Scary info indeed!  Makes me wonder about the illness that went through our community in Nov/Dec.  Even people who were never sick became ill from "flu-like" symptoms.  Many still have lingering effects after 6 weeks.
 
 
18.  TINNITUS & FIBRO
From a reader--
"CAN YOU ADVISE ME. I HAVE A HIGH PITCHED HISSING NOISE IN BOTH EARS AND MY BLOOD COUNT SHOWED UP AS AUTO IMMUNE DEFIENCY WHEN THE DOCTORS WERE LOOKING FOR LYME DESEASE."
I have had tinnitus for years.  It has gotten better, but is still always there.  I do recall years, though, when it was very loud and drove me crazy.  What made it worse, was I was a secretary before computers came out, and those typewriter keys made a lot of racket and annoyed me no end.  Also things like putting silverware away in the drawer (the clanging sound), and then I became a piano teacher 15 years ago and the sounds from the piano would aggravate it too. Worse yet was when I played the piano in a church where the orchestra was behind me, including trumpets and trombones.  Oy!  The pain!  I had to quit!  For years I used a "white noise" machine (gadget from Sears) to block out the hissing in my ears when I was sleeping.  It helped distract me.  Certain meds make it worse - like aspirin and cold remedies.  I am trying to think of what made it better (tolerable - to where it is today).  I think as I found more things to help the fibro - see http://www.fms-help.com/tips.htm that the tinnitus got better too.  However, I also have hyperacusia (sensitivity to sound).  I remember taking a hearing test at the hearing place at walmart.  They put me in a booth to do a test, but what I was hearing was the bling, bling, bling sound of the clerks using the scanner at the checkout stands!  The technician told me that my hearing loss was not in my ears but something cognitive.  I know that something in my brain does not work right (ever since I developed FMS/CFIDS in 1982).  See http://www.fms-help.com/yuppie.htm for an Australian article called DRAINED BY THE BRAIN.  I also had the unfortunate experience as a child of having my eardrum punctured (by a doctor) to relieve pressure from an ear infection.  Ever since then, I have had trouble hearing in that ear - for instance, the aforementioned typerwriter keys - they would make like a skipping noise in that ear - perhaps because there was scar tissue on the eardrum.  Anyway, I mainly want to say I know how aggravating and maddening tinnitus is.  Blocking it with distracting noise (like a fan) is the best thing I have found.  Also AVOID LOUD NOISES.  I carry foam earplugs in my purse everywhere I go - it's amazing how many times they have helped me in a situation where I found the noise to be unbearable for me, but okay for everyone else.
 
 
19.  DOM'S UPDATE
Well, I sure hope everyone is doing well and didn't overstress during the holidays.  Stress is the worst enemy of us fibromites.  Personally, I had to cut way back on social events, entertaining, etc. to maintain my own health during this season.  (I won't win any popularity contests, but it was necessary.)  As a church pianist, I enjoyed playing the beautiful music of this Christmas season, particularly for our Candlelight Service, which my husband Donnie and I both agreed was the best and most meaningful service of this kind that we have ever attended!  I enjoyed making a Christmas Carol CD for friends and family, which some of my newsletter readers also got to hear and enjoy www.fms-help.com/CD.htm. 
 
My husband Donnie and I had a peaceful Christmas day at home with just us and my 86 year old mother.  We sure did miss my father, who went to be with the Lord 3 years ago www.fms-help.com/eulogy.htm.  He had been such a loving, kind presence in our lives for so many years and is sorely missed!  I know many of my readers had a difficult year with health and also lost family members, so you are in my thoughts and prayers.
 
I received a sweet email from a reader who said:
 
"You are so kind, so thoughtful. How do you do it when you must spend so much time taking care of yourself too. Thank you for everything you do  for all of us, every time you write a single word."  
 
Well, lest anyone think I am "Superwoman," I'd like to explain....
 
I am no longer raising children, I only work part-time, and my husband is very understanding about the amount of time I spend on my website www.fms-help.com, the newsletters and corresponding with fellow fibromites.  I have little time and energy for other things, so while some watch TV, crochet, knit, paint, or do crafts for relaxation, I work on the website and newsletter.  Usually at bedtime I read biographies or Christian fiction from our church library.  This gets my mind off the troubles of the day and gives me a better perspective on life. 
 
Thankfully, my FMS/CFIDS is under control (managed) most of the time www.fms-help.com/what.htm, but even when I have been extremely deblitated, I could still prop myself up in front of the computer.  It seems that whenever I tried to stop writing the newsletter, there was so much information coming my way that I felt obligated to share it with fellow fibromites, so would send out another newsletter.  The newsletter began in 1996 and it's hard to believe that I have anything more to say on the subject!  So unless they find a cure, the newsletter will probably continue until the Lord calls me home.  Fortunately, many fibromites have laptop computers that can be used in bed, so with our modern technology, even those who are very ill can still communicate with the outside world.  What a blessing to no longer isolated and alone!
 
I pray that 2008 will be a better year for all of us!  We have all had many struggles, battles and difficulties personally and in our world during 2007.  We are living in unstable and dangerous times.  It is both comforting and scary to me that everything prophesied in the Bible is lining up as predicted for the end times.  I believe Jesus will return soon to gather his elect.  Then there will be 7 years of "great tribulation" worse than anything the world has experienced up to this point.   I want my readers to know that I believe in Jesus.  I was "born again" at age 36 - my story "Religious but Lost" is at www.fms-help.com/salvation.htm.  There is no more important message that I can share with my readers than of my faith in Christ.  So if you ever hear that Dominie has died, please don't be concerned.  I am alive and with the Lord and hoping to meet you there too in a grand reunion!  Heaven is a place of pure joy and love - no sin, sickness, suffering or death!  I love the book "90 Minutes in Heaven" by Don Piper, who was killed in a horrifying accident when an 18 wheeler crushed his small car.  He went to heaven for a short while, but was prayed back to earth.  He suffers daily continuous pain from his extensive injuries, but is a sought-out speaker and author who tells what he saw in heaven - it has been a great comfort to me in the loss of my dad.
 
Isn't it interesting that the baby whose birth we honored this month grew up to become the Savior of the world!   Jesus paid the penalty for my sins, and because of this, I can go to live with a holy God.  Jesus doesn't have to be a "stranger in a manger."  The plan of salvation is in the Bible for all who will read and seek, regardless of nationality, color, financial status, educational level, political view or anything else that divides us here on earth.  It is a free gift to all who will receive it.  (John 3:16)
 
 Til next year!
Dominie
 
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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.