DOM'S FMS/CFIDS NEWSLETTER
www.fms-help.com
 
 
March 7, 2009
 
A Christian-based newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.) and their families.
 
Topics below in blue.  Readers comments in black.  My comments in teal.  Don't miss red topics!
 
Dom's Quick Links:   Fibro Story  CFIDS Story    Insomnia Story    Newsletter Archives   Med List   Homepage  Previous Newsletter
 
 
1.  READERS WRITE
 
"Thank you for taking the time to put together so much wonderful information!  I came across your information today while searching for effects of nightshade plants."
 
"I have just realized from reading your site that I have suffered with fibromyalgia my whole life!  Your site www.fms-help.com provides much needed information!  I am always the one who, if I clean my house, I can only do one room a week at a time because I am crippled for two weeks after each session!"
 
"I am learning so much from your newsletter. Thanks for all the hours you have devoted to it."
 
"I was directed to your site by another support group leader.  Thank you for all the work you do and for the inspiration you provide to others.  'If God is with us, who can stand against us!'  AMEN!"
 
"I read your story www.fms-help.com/fatigue.htm. I could have placed my name in there instead. I've
 suffered with CFIDS for 14 years."
 
"Thank you a thousand times for the support you give me and thousands of others with this devilish condition."
 
 "I too, have had fibromyalgia since 1981.  I think your website is awesome."
 
 "THANK YOU for all you do—you are the warm voice in my life that says it’s okay to be who I am."
 
 
 
2.  ELECTROMAGNETIC FIELDS & FMS
 
Reader 1--
 
"Just wanted to chime in and say that my body also stops watches.  It didn't always, but it has ever since my fibro symptoms began.  Also, I hate sleeping next to any kind of equipment that is plugged in such as boom boxes, etc.  Some emit a hum or chemical smells that make me really uncomfortable!  I also hate having the television and other equipment on for long.  Even if it is on mute, I don't feel relaxed and at peace unless I shut it off!"
 
Reader 2--
 
"I wanted to tell my story of electromagnetic fields.  When I was a child I was electrocuted by a live 110 wire and was grabbed and held onto by the wire for about 30 seconds. I didn't die from it obviously nor did I pass out. I did get some burns but they were minor, not even enough to see a doctor. Since then I have noticed many things about myself that are not normal. I am able to hear electricity from miles away. When I get near power lines my body tries to make a connection with them by the electric field of my body trying to link up with the free floating escaped power that emits from the lines. Often times the lines will either drain my energy from me or I will be energized from them. When I lay down to go to sleep and I am in that state where I am almost asleep, I will get jolts of electricity through my body as if the electrocution process is happening all over again. The accident happended when I was 10 and I am now 38, so the effects are apparently long standing. I have been diagnosed with Chronic Fatigue as well as Fibromyalgia years ago.
 
I have always had trouble with magnets. If I hold a compass, for instance, it starts spinning wildly. I have a lot of trouble with my computer losing it's hard drive memory several times a year. I had an MRI done several years back, and when it was over I felt like I had been hit by a Mac truck instantly after they turned the machine off. I still am trying to recover from that MRI. I was bedridden for three months after the MRI and now I am functioning but slowly, and it has been 3 years since I had the MRI.
 
I do not know if the electrocution has anything to do with the negative affects I receive from magnets and electricity, but it is certainly something to consider.  Consider in our schooling history lessons that before there was electricity people used oil for lamps to light their homes and wood for fires to cook their meals. When you read about this you notice that all of the people worked hard lives for long hours all day everyday and never went to the doctors for fatigue. Still, these people lived fully functional lives for many years. I realize their medical technology was not as advanced as it is now, but if there was a huge epedemic, it was reported and the people were quarantined. There are no records of people who lived before electricity of having any type  of disease similar or related to Chronic fatigue or fibromyalgia.  Anyway, I think that there may be something to this electromagnetic thing. I am so far unable to use any type of therapy with magnets or electricity because it only makes me worse."
 
Reader 3--
 
"Dr. Devin Stalanyl, in her book on fibromyalgia and chronic myofascial pain, told that she has the same condtion as the reader wrote to you.  She cannot wear a watch, she has crashed computers, etc.  She has a good 3-4 pages in her book.  Look for Dr. Devin Starlanyl & Mary Ellen Copeland: Fibromyalgia and Chronic Myofascial Pain Syndrome, Second Edition."
 
 
3.  MINACIPRAN
 
From a reader--
 
"I have been in the clinical trial for two years now and I must say it has improved my symptoms so much I feel like I have my life back.  I started out on a lower dosage and am now up to 100 mg twice a day, which I believe is the full dosage.  It must be taken after eating to prevent stomach upset.  I have had one side effect that sure didn't upset me.  I lost weight, about 30 lbs!!!"
 
 
4.  BIPOLAR
 
From a reader--
 
"After an extended visit with my Internal medicine dr. this afternoon, I am very puzzled by her response to me. Her answer to my questions were, "Let's look at the possibility of Bipolar 2 Disorder". The way she explained it at the time, it seemed harmless enough (in fact, perhaps I was born this way!?!) But as I've done research on the Internet, I'm afraid if I keep the appointment with the psychiatrist, I'm going to end up on some powerful meds as well as a dx. that is really a horrible case of FMS/CFS........(which I have had most of my adult life, as well as arthritis/allergies/migraines).  Has anyone else you have dealt with had this experience? Am I right to be cautious? Guess I am just looking for a friendly "voice" with experience right now. I want to avoid crisis, but I'm feeling one rushing at me."
 
From Dom: My doc (internal medicine) recently put me on Seroquel 25 mg to help with sleep. However, in larger amounts it is used to treat bipolar.  I decided to try it and was glad I did, because I am feeling better.  A complete list of everything I use is at www.fms-help.com/what.htm.  On one side of my family there is OCD, which I have a slight bit of, but I have 2 cousins who are disabled by it.  Schizophrenia also is in my family.  Therefore, I wasn't too surprised when my doc suggested trying a bipolar med, in addition to my sleep med.  Don't feel you have to take massive doses of ANY med.  I have always used a pill splitter to try the least amount of med to get a positive effect without a negative side effect.  I don't know what bipolar 2 is.  I do believe I was "born" with some genetic factors that made me a candidate for the sleep disorder and FMS/CFIDS later in life. I am now 57.  The insomnia began at 16.  The FMS at 30 and the CFIDS at 35.  Hope my experience helps a little. Don't feel you have to take any med you are uncomfortable with, can't afford, or have doubts about.  Our bodies are very intricate and delicate.  It takes a compassionate, knowledgeable doc to help us find the exact med or combo that works best for us. 
 
From reader-- 
 
"Your reply is so helpful and appreciated. This condition tends to corner us and leave us feeling so vulnerable sometimes. That certainly has been my case the last few months as the fibro has changed like a chameleon once again. I wasn't sure how to cope with this new set of "sly" symptoms.  I think you are correct about FMS carrying a family history of some mental illness with it. Both my mother and father's family definitely had those issues. I feel better having "talked" to you. Just a bit more focused on what I need to concentrate on now.  God bless you! Clearly you're called to reach out to hurting 'fibro folks."
 
 
5.  LIFE DISRUPTED
 
Book recommendation from a reader--
 
"Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties"
Edwards, Laurie
Medicine and Health

The author, a twenty-seven-year-old health journalist with several chronic illnesses, shares her own experiences and those of other young adults who have conditions that are treatable but not curable. Discusses dealing with the medical establishment, the work world, and personal relationships. Offers guidance on managing one's health care. 2008.

Reader replies--
 
"Thanks for the heads up.  I picked this up at the library last week...really good book!  Especially for a 36-year-old guy with CFIDS, FMS, and COPD."
 
 
6.  A DRINK A DAY INCREASES CANCER RISK
 

7 year study shows  one drink a day increases cancer risk - Moderate alcohol use has long been thought to be heart-healthy, but a study of nearly 1.3 million women over 7 years offers yet more evidence that moderate alcohol consumption increases the risk of a handful of cancers.  The Journal of the National Cancer Institute says, “Each extra drink per day increased the risk of breast, rectal and liver cancer, quoting a University of Oxford researchers report. The type of alcohol — wine, beer or liquor — didn't matter.”  “For an individual woman, the overall alcohol risk is small. In developed countries, about 118 of every 1,000 women develop any of these cancers, and each extra daily drink added 11 breast cancers and four of the other types to that rate, the study found,” the report says.  http://www.foxnews.com/story/0,2933,499826,00.html

 
 
7.  ENDOMETRIOSIS & FMS
 
From a reader--
 
"My daughter [late teens] has severe endometriosis and is showing signs of fibro. There is mounting research that shows  huge proportion of endometriosis patients developing CFS/FMS.  Ironically, I am a previous endometriosis patient myself."
 
From Dom:  Me too.  My endometriosis began around age 18, and I had a hysterectomy at age 34.  By the time I had the surgery, I was enduring 29 days of extreme suffering every month.  Besides the tremendous pain, it also affected me mentally, and I couldn't think straight.  It was a relief to have the operation, although I have struggled with estrogen-replacement problems since then.  (I am now 57.)
 
 
8.  SULFITES & FMS/CFIDS
 
From a reader--
 
"My specialist recommends that some Fibro patients limit their intake foods that contain high levels of sulfur and sulfites (eggs, broccoli, onion, garlic, etc.) due to reactions by their immune systems.  I can’t begin to adequately explain this phenomenon, but it’s explained at the website on Sulfites and Chronic Disease www.readingtarget.com/nosulfites/chronic.htm.  It is just one more dietary piece of the puzzle that explains how our individual genetic predisposition influences our health."
 
From Dom:  I noticed that some of the foods on their "good" list are usually on a "bad" list for people with fibro.  Sometimes you just can't win.  Each of us is different in how we react to food.
 
 
9.  MOLD
 
From Dom: I hear from readers who have been adversely affected by mold in their homes or workplaces, just like I was in 2005 www.fms-help.com/mold.htm.  A reader sent me this link: http://www.moldrx4u.com/faq.asp - GETTING RID OF MOLD BY DIFFUSING ESSENTIAL OILS.  Also, see http://dom.younglivingworld.com - look up the Thieves Blend.  Also, go to www.oil-testimonials.com/6861 with testimonials - use SEARCH feature - type in MOLD.  You will find some very interesting stories of how people got rid of mold with essential oils.
 
 
10.  HAVING SURGERY?
 
From a reader--
 
http://fmsg.info/modules/newbb/viewtopic.php?topic_id=3&forum=2&post_id=5#forumpost5
 
by The Oregon Fibromyalgia Team
ImmuneSupport.com
09-27-2006
 
If you are having a major surgical procedure there are some issues that you may wish to discuss with your surgeon and anesthesiologist that could reduce the "fibro-flare" that often occurs after surgery in Fibromyalgia patients.
 
1. Request that you wear a soft neck collar and minimize neck hyperextension (if an endotracheal tube is anticipated).

2. Request that your arm with the intravenous line be kept near your body, not away from your body or over your head.

3. Request that you be given a pre-operative opioid pain medication - about 90 minutes prior to surgery. Opioids are morphine or morphine related drugs. The rationale for the pre-operative use of opioids is to minimize "central sensitization" - as this inevitably worsens the widespread body pain that you are already experiencing.

4. Ask to have a long-acting local anesthetic infiltrated into your incision - even though you will be asleep during the procedure. The rationale for this is to minimize pain impulses reaching the spinal cord and brain, which in turn drive central sensitization.

5. As a Fibromyalgia patient you will need more, a usually longer duration, of post-operative pain medication. In most cases opioids should be regularly administered or self administered with a PCA pump (patient controlled analgesia).

6. Most Fibromyalgia patients require a longer duration of post-operative convalescence, including physical therapy in many cases.
 
From Dom:  These ideas should help minimize FMS pain from surgery.  Wish I had known these ideas when I had my hysterectomy at age 34 (for endometriosis since age 17).  The doc said I could go back to work in 6 weeks.  What a joke.  It was about a year before I could even begin to function normally.  I am a slow healer.  I agree with #6 above.
 
 
11.  MEN WITH FIBRO
 
From Dom:  I often hear from men with FMS/CFIDS.  I think they suffer more misunderstanding than women with this illness, both economically and socially.  Men are usually the financial backbone of their families and are expected to provide.  See my men with fibro page at www.fms-help.com/men.htm.  A list of my readers' occupations (generally former) is at www.fms-help.com/occupations.htm.  Nearly all were "gung-ho" personalities who worked very hard before their lives were wrecked by this invisible illness.  My own story is at www.fms-help.com/fibro.htm.
 
 
12.  SUICIDE
 
From Dom: I just updated my page at www.fms-help.com/suicide.htm.  People with chronic illness can find it very hard to "hang on" at times.  I sure know how that is.  Illness is depressing and painful, but I am here for you, God is for you, and there are many who have FMS/CFIDS and experience the losses, misunderstandings, suffering and daily battles - and they understand.  We need to stick together and keep eachother encouraged!  This is one purpose of my newsletter, which I have been writing since 1996 (13 years ago now).  I still have some readers who have been with me almost from the beginning.  Wow!  I hope the information I share in my newsletters is helpful or at least insightful on some level.  If docs understood FMS/CFIDS, newsletters like this wouldn't be necessary, because the cause and cure would be known!  Meanwhile, questions remain and MORE RESEARCH needs to be done.  This is illness remains a mystery for now - there are lots of clues, but no real ansswers.  I rely on all kinds of props in my life (meds, supplements, and lifestyle aids) to keep going from day to day, but none of these things is a "cure."  Cure means that you don't need these things anymore and can function like a "normal" person.  What works for one doesn't work for another, hence the ongoing confusion about FMS/CFIDS for both doctors and patients.
 
 
13.  INFLAMMATION CAUSES FATIGUE
 
From a reader--
 
http://www.wellnessresources.com/studies/entry/inflammation_and_fatigue
 
"A fascinating new animal study has uncovered a key mechanism that short-circuits energy production by reducing the ability of nerves to function correctly.  This study has profound implications for health, as well as the prevention of disease and early death.

The researchers documented for the first time that inflammation outside of the nervous system, in particular the inflammatory messenger known as TNFa, crosses into the brain and activates glial cells within the nervous system.  In response, glial cells send out a message that attracts immune cells into the brain – where they should not be.  In turn, this sets off a chain reaction of events in the nervous system that results in fatigue.  The researchers showed that by blocking TNFa activation of glial cells in the brain, this fatigue cascade was prevented even though the inflammation still existed.

Many people have inflammatory conditions that are depleting energy in this way.  This is one mechanism that explains how too much wear and tear of any kind causes fatigue.  This information would especially apply to individuals with chronic pain, nagging aches, and inflammatory health problems like arthritis, lupus, or fibromyalgia.  Of course, just being overweight causes excessive production of TNFa which can set this nerve-driven fatigue process in motion.

Oftentimes we look at nutrients that help make energy when we look to help the fatigued individual, which is one valid angle to consider.  It may be just as important to reduce inflammation, so as to stop processes that are turning energy production off.  This data has wide-ranging application to thyroid function, weight issues, as well as overall health and longevity."

 

14.  GLUTEN INTOLERANCE

From a reader--
 
http://www.womentowomen.com/digestionandgihealth/glutenintolerance.aspx 
 
"We are now understanding that gluten has many more far-reaching effects than previously believed, and indicators of gluten sensitivity and celiac disease can show up in the form of low energy, fatigue, brain fog, skin rashes, numbness in the extremities, fibromyalgia, muscle and joint pain — even problems with coordination. And all forms, whether overt or silent, can have devastating long-term consequences all over the body."
 
From Dom:  I've heard from a number of readers on the subject of gluten intolerance (newsletter archives at www.fms-help.com/newsletters.htm - use search box).  Some readers have been helped with gluten free diets, while others weren't.  This is so typical of fibro problems!  There's no "one size fits all" answer.   Well, at least this is another option to try.
 
 
 
15.  MAILBOX FOR DOM
 
From a reader--
 
"I put all your emails in one file and never delete them either.  I enjoy each and everyone of them. I couldn't be without your wealth of information."
 
From Dom: This is a good idea.  I know I send out a lot of stuff.  Some readers have told me they have an email folder labeled DOM, to save the newsletters and other things I send.  If you don't have time to read it right then, you can save it in the mailbox for later.  Readers sometimes delete things I send, then write me back later to ask for it, so "Dom's mailbox" is a good idea.  In my email program, Outlook Express, you can search for specific words in a folder, which is very handy when you're trying to locate something you remember reading but can't find.
 
 
16.  FIBROMYALGIA AWARENESS DAY - MAY 12, 2009
 
http://www.fmaware.org/site/News2?page=NewsArticle&id=8189 - from the National Fibromyalgia Association
 
From Dom:  In 2005, my readers participated in the Million Letter Campaign.  See www.fms-help.com/letter.htm to see the various media and others we contacted in a massive effort for increased FMS/CFS awareness.  Also, see my letter to Congress at www.fms-help.com/congress.htm for Fibromyalgia Awareness Day in 2006.  Anyone have a good idea for 2009?  If you just want to send an email to friends and family about FMS/CFIDS on May 12, 2009, I have some good links on my homepage at www.fms-help.com - check out the topics in the yellow box on the left.  (For example, www.fms-help.com/mnif.htm or www.fms-help.com/neuro.htm.)  It's hard to help people understand this illness - often impossible.  Sometimes we just have to leave this in God's hands and accept our lot of suffering.  Here's a comforting email I received from a reader named Steve - it was eloquent:<
 
"Here is some of what I have learned as a man from my own
experience with CFIDS/FMS, life, suffering and shame.
 
Who can know the pain and suffering one must endure?
When misunderstood by those who have no time,
to account for their own infirmity and lack of understanding.
 
There was One who bore all of our diseases, faults, shortcomings
and weaknesses. He understands. The One who was rejected,
so that we might know acceptance. Hated that we may be loved.
Reviled so we could be blessed. Had compassion for those who
murdered Him.
 
Pray for Mercy upon all those who would judge, having so far
been spared the pain themselves, knowing not what they inflict.
So fulfiling our own calling, that we might use that which was
meant for evil, rather to be turned back and used for good
instead. As One has already done for us in loving kindness.
 
This is why my loud cry is always for Grace!"
 
Steve
 
 
  
17.  LONGING FOR UNDERSTANDING
 
Reader 1--
 
"In reading this article (The Knights of Fibormyalgia - about a man with fibromyalgia), I felt I was reading my life story, yet I am a woman that suffers from fibromyalgia. The article almost made me cry to hear that it's not only me.  Saddens me because it seems no one truly understands. Thanks again for letting me know I'm not crazy or a hypochondriac or prescription junkie as others without disease would assume."
 
Reader 2--
 
"It seems when I'm around people they have many questions about why I
can't work. They always have some sort of "story" to tell about people
 who work with ailments, etc. My family has not understood at all, and
they do not feel CIFDs is an illness. They ask questions such as "What
 part of your body hurts?"  It is really humiliating. I do have an
 understanding husband. I also have valvular heart disease, which
 was confirmed by a cardiologist."
 
From Dom:  Have you ever heard comments such as: "Why don't you try harder?"  "You don't look sick."  "You limit yourself too much."  "Quit using your illness as an excuse!"  We probably all have!  Grrr!!!  On good days, these comments are merely annoying.  On bad days, they can be very painful emotionally.   Check out www.fms-help.com/genetic.htm (genetic mutation in the brain causes CFIDS) and http://www.fms-help.com/trying.htm (why "trying harder" doesn't work for CFS).  I have MANY other good articles that prove FMS/CFIDS is REAL.  Look in the yellow box on my homepage at www.fms-help.com.  Scoffers beware....you could be the next victim of this invisible, debilitating disease!   For a list of occupations my readers had when FMS/CFIDS struck, see www.fms-help.com/occupations.htm and learn WHO GETS FIBRO?  And here are more links for helping others understand what it's like for us to live with FMS/CFIDS--
 
www.fms-help.com/mnif.htm - My Name is Fibromyalgia
www.fms-help.com/neuro.htm - What it's like to live with neuro-endocrine-immune illness
www.fms-help.com/congress.htm - Dom's letter to Congress
www.fms-help.com/letter.htm - The Million Letter Campaign for FMS Awareness
www.fms-help.com/disbelief.htm - Doctor's disbelief kills young woman with CFIDS
 
 
18.  STUDENTS WITH FMS/CFIDS
 
Reader 1--
 
"I stumbled across your website this morning...I am so tired.  I have been fighting this battle with my teenage daughter for over 3 years.  I don't know what to do.  When she goes to the Dr she tells the Dr everything is O.K. and that she is doing well.  Then we have a totally different way of life at home.  I am so frustrated.  She is failing in school and I cannot get her to go to school.  Do you know of any "teen" websites?"
 
Reader 2--
 
"Thank you so much for this email [College Fibro Blues].  Just today, a young lady at church told me she had to quit college (nursing) because her fibro was getting so bad she could not do it.  Pain, fatigue, brain fog and much more.  She is so young.  I forwarded this to her. The timing of this email, I am sure, was guided by Someone greater than us.  Thanks again."
 
From Dom:  I hear from many teens and young adults with FMS/CFIDS - or their worried parents!  These young people's lives (school and social) are disrupted, and many experience the stigma of this poorly understood illness.  See my page about kids with FMS at www.fms-help.com/teens.htm, and also www.fms-help.com/neuro.htm, about what it's like to live with a neuro-endocrine-immune illness and how life-disrupting it can be. 
 
Here's a support group for  teens and young adults with FMS/CFIDS: http://sunshine35446.yuku.com/forums/66/t/Young-Adults--teens--FMS-CFS-Fibromyalgia-Chronic-Fatigue-Sy.html. 
 
Once again, here is a list of occupations that we (Dom's readers) had at the time FMS/CFIDS struck our lives: www.fms-help.com/occupations.htm. We are definitely NOT slackers!  (I still think this illness is a viral attack on the brain and nervous system of genetically predisposed individuals - there are lots more theories from people smarter than myself at my homepage www.fms-help.com.)
 
 
 
19.  SILICONE BREAST IMPLANTS
 
From a reader--
 
 "My problems began with leaking silicone implants. I had them removed
 four years ago, and my symptoms abated somewhat, but I still suffer
from extreme mental fatigue and exhaustion. My fibromyalgia has gotten
 much better. I can tell when I go in someone's home with a pet because
 I react to the pesticide they apply to their skin. Also, I can tell if
 they spray their home. I have tried to eliminate processed foods,
 which does help also."

From Dom:  Since starting my FMS/CFIDS site www.fms-help.com in 1996, I have heard from quite a few women whose FMS woes began with leaking silicone breast implants.
 
 
 
20.  SLEEP APNEA & FMS
 
From a reader--
 
"It's interesting you mention teenagers and fatigue. Obviously school pressure and lack of sleep during study times is a major issue.  I remember suffering bouts of tonsilitis, glandular fever, chronic fatigue, chronic ear infections.  I mean I was really sick.  But consider this, I am now 34 and for the past 3 years have suffered from fibro symptoms, quite serverly.  Tested for every possible thing, and that’s what they have come up with.  Only until recently I ended up in hospital with a collapsed disc in my back which was pinching my sciatic nerve.   At the time I was at my lowest point with my fibro, the fatigue, stiffness and sorness in my feet, hands and back were unbearable, and the only thing i found to help me that actually stopped pain was steroid tablets, prednisone.  So I took it for 3 years solid, and have suffered many complications, weigh gain, puffiness, metabolic syndrome, skin issues, PCOS the list goes on and its very boring hahahhaha.  However it has been discovered that I may nave sleep apnea!  This is such a breakthrough because I think it may be linked to my fibromyalgia.  A persons sleep bank is very important, when it is drained and there is no opportunity to catch up you're going to get sick!  But you can get better with a proper night’s sleep.  As I was deeply affected during my highschool years, it seems I am being deeply affected now also with the sleep apnea.  I am hoping to be treated for this condition and it will be interesting to see if my fibro improves also with the treatment?  I know you must get alot of hopefull people sending apparent cures, however I will keep you posted on this one.  There may be a link, and if it could help other’s in the quest for a solution I am only to happy to share my experience."
 
From Dom:  YES!!!! The importance of sleep cannot be overstated.  Read my insomnia story at www.fms-help.com/insomnia.htm and a list of things I've tried for sleep since 1982 at www.fms-help.com/sleep.htm.
 
 
21.  A PRAYER FOR SLEEP
 
From a reader--
 
"I know many of us have serious sleep disorders. I have this typed and framed by the side of my bed and say it out loud before I sleep. And, many…many…many times I say it again during the night when I wake, tossing and turning. It brings me great comfort, especially the Bible verses regarding sleep--

 I have the peace of God my father in my mind, body and nervous system. I refuse to be worried or upset about anything. I will lay down and sleep and my sleep will be restful and peaceful in the name of Jesus. While I am sleeping the Holy Spirit is quickening and healing my mind and body in Jesus name. Thank you God, for your peace and love that I have on the inside of me.

Psalm 3:5 - I laid me down and slept; I awoke for the Lord sustained me

Psalm 4:8 - I will both lay me down in peace and sleep; for thou Lord only makest me dwell in safety.

Psalm 127:2 - He giveth his beloved sleep.

Proverbs 3:24 - When thou liest down, thou shalt not be afraid; yea, thou shalt lie down and thy sleep shall be sweet."

 

22.  "HOUSE" TV SHOW MOCKS FIBRO

From a reader--

"This brings up something I've seen on TV on episodes of "House."  The first time I heard FMS mentioned was when a Dr. House was seeing what was probably a real hypochondriac who though he had nearly everything in the medical textbooks.  House initially blew him off saying something about spending too much time on the internet researching, then gave him some candies in a prescription bottle.  Apparently, the placibo worked because the guy returned for more of the "medicine" House gave him.  That probably drew lots of hate letters from FMS sufferers!   The next time they dealt with FMS was another episode during one of their group diagnosis sessions.  Someone said it might be FMS, and again House blew it off saying it wasn't a real diagnosis.  Then 2 of his long term associates came back with something to the effect, "Thousands of Rheumatologists and the American Association of Rheumatology would disagree with you."  The other one said, "Yea, but House will never admit it exists because he cannot cure or even treat it so he can't determine if his diagnosis is RIGHT!"  And if you watch that show, he is always about being "RIGHT"."

From Dom:  This was big news when it happened.  Typical of the bias and misunderstanding being portrayed.

 

23.  "WHY I CAN'T MAKE PEOPLE UNDERSTAND"

From a reader--

"There is a book I would recommend  everyone read the title is " Why I Can't Make People Understand" by Lisa Copen who is the director of Rest Ministries www.restministries.org.  The Lord will use this book to bless your life and it will answer many questions."

 

24.  THE SCIENCE OF FIBROMYALGIA

From a reader--

http://www.fmaware.org/site/PageServer?pagename=fibromyalgia_science - central nervous system sensitization 

 

25.  ANTI-EPILIPTIC DRUGS INCREASING RISK OF SUICIDAL THOUGHTS, BEHAVIOR

http://www.docguide.com/news/content.nsf/news/852571020057CCF6852575210078C283?OpenDocument&id=364EAA39CFB8A73D85256FEE00363C0B&c=&count=10

Excerpt:  "The following antiepileptic drugs are required to add warnings about the risk of suicidality: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol XR); clonazepam (Klonopin); clorazepate (Tranxene); divalproex sodium (Depakote, Depakote ER, Depakene); ethosuximide (Zarontin); ethotoin (Peganone); felbamate (Felbatol); gabapentin (Neurontin); lamotrigine (Lamictal); lacosamide (Vimpat); levetiracetam (Keppra); mephenytoin (Mesantoin); methosuximide (Celontin); oxcarbazepine (Trileptal); phenytoin (Dilantin Suspension); pregabalin (Lyrica); primidone (Mysoline); tiagabine (Gabitril); topiramate (Topamax); trimethadione (Tridione); and zonisamide (Zonegran). Some of these medications are also available as generics."  
 
 
26.  LDN (LOW DOSE NALTREXONE)
 
From a reader--
 
"I am an LDN user and this has really changed my health.  Still have to watch my wheat and sugar categories, but even the LDN has helped me in that area.  I can tolerate more of them."
 
 
27.  GOVERNMENT SAYS FMS IS REAL
 
From a reader--
 
"The US government and the Veterans Affairs does believe in Fibromyalgia.  Not only do they acknowledge its existence, many, many Gulf War veterans are given a rating of a service connected disability for this condition (which involves a monthly pension). They believe that it was caused by (if my memory serves me well) either a vaccine, pesticides or  exposure to toxic fumes of burning oil.  I am a registered dietitian at a VA Medical Center, and sometimes I help with the monthly Fibromyalgia group that is conducted by a PhD, Nurse Practitioner from Rheumatology.  It is acknowledged that there is no cure, just symptom management, but it is acknowledged.  This is not an "alternative group" using alternative medicine. This is a traditional medicine facility using traditional medicines for pain, depression  as well as physical therapy etc."

 
 
28.  NATURAL RESTFUL SLEEP
 
From a reader--
 
"Click here: Could Your Muscle Pain Really be Fibromyalgia? What You Should Know... - articles - articles.mercola.com
 
Dom, here is an excellent 5 minute video on Fibromyalgia emphasizing the absolute necessity for restful natural sleep, not drug induced.  Again I will recommend Coffea Cruda 30.  I've been taking this for 4 years without any side effects and I am able to fall asleep and stay asleep and wake up refreshed.  It took several months of this restful REM sleep to begin my recovery from FMS/CFS but I am 90% better than I was 4 years ago.  I do regular warm water exercises that do not exacerbate the pain because while I am in the water there is less weight on my joints and muscles.  And the warm water is so therapeutic, gently massaging your body while you move.  Focusing on the positive has also been what has helped my recovery.  Not 'What I Can't Do', but 'What I Can Do'.  Not, 'What Hurts', but 'What Feels Good Today'.  And I practice EFT (Emotional Freedom Techniques) daily.  Check out www.emofree.com. All I know is that YOU CAN GET BETTER!!!" 
 
From Dom:  Fascinating about Coffea Cruda 30!  I've mentioned this in past newsletters, but haven't tried it yet.  Just might do that!  The list of meds I have to take for sleep is at www.fms-help.com/what.htm.  I always sleep better if I go to bed late and get up late.  Because of this, I only schedule piano students for afternoons and evenings.  Evening church services (Sunday and Wednesday) are easier for me to get to than Sunday morning, which is my toughest time, because I have to be at church in the morning, focused and ready to play for the morning service.  Without sleep meds, I don't sleep at all.  My insomnia story is at www.fms-help.com/insomnia.htm.  I've been this way for over 40 years now.  Unresolved insomnia (which I had for decades - a hellish existence really....) wrecks your immune system and you can't maintain any kind of good health or quality of life.  Solving the sleep disorder is VITAL to getting health back.  As one reader said recently, I always thought "tired" and "sleep" went together until I got fibro.  This brings to mind the elderly man who used to call me years ago many times.  He had not slept since he joined the military at 18.  He was in his 70's when he began calling me.  He said, "If you think boot camp is rough, try it WITHOUT SLEEP!"  (Shudder!)  He went on to have a life of terrible health (no surprise).  I have often wondered if it was the stress of boot camp or the vaccines he was given that took away his sleep function.  My own sleep disorder began at 16.  This dear man eventually was able to sleep when he started using the immune powder.  He called to tell me this with great joy - it sounded like he was in tears.  II can only imagine!
 
 
29.  DAUGHTER TO MOTHER
 
From a reader--
 
"I sent your email to my daughter who has had CFS since she was 23 and is now 44.  This is the answer she sent to me thought I would send it onto you"--
 
"Hi mum - I have had so much skepticism over the years I have switched off and can't talk or be bothered to explain it anymore its not worth getting angry over anymore. We live with a mystery, we are a mystery, we remain a mystery.  Tell Dominie we are modern day lepers, no one wants to know about us, we are here to teach people that is our lesson on this earth, we will be stronger spiritually for it, they won't, have pity on them they know no better."
 
 

30.  DOM'S UPDATE

I'm feeling okay these days, thank God.  It's a joy to teach piano and work in the music ministry at my church when I am feeling "well."  It would be great to be a "normal" person and have plenty of days like these!  No one knows how hard it is to function with FMS/CFIDS except those of us who have it.   A list of things I use to keep going is at www.fms-help.com/what.htm.  Some I use daily, some as needed.  Many friends and family do not understand my condition.  They think I should just "try harder" and "think positive."  (Read www.fms-help.com/trying.htm to see why "trying harder" backfires with CFIDS.)  I am so appreciative of my supportive husband and all those who DO understand my condition, like my dear brother.
 
My Aunt Tillie passed away this week.  She was 91.  I was saddened that I couldn't travel to Michigan to be at her funeral and pay my respects in person (can't travel ever since I worked in toxic mold in 2005 www.fms-help.com/mold.htm.)  Sending flowers seemed so inadequate at a time like this!  My dear aunt took care of everyone in the family - beginning with her aging parents, then her 4 nephews, and then many others who came to her for help.  She was born to immigrant parents from the Ukraine, and grew up with unbelievable hardship as a child during the depression.  As an adult, she worked as a bookkeeper for 40+ years, sang in the church choir and taught children's Sunday School.  She never married, sacrificing her own life for others who needed her.  She was also JOYFUL, FUNNY, and at times outspoken, but never complained!  A true saint!  7 years ago, she suffered a severe stroke, and it was all downhill from there.  So sad.  I will never forget my aunt or her love for me!  What an example she was of Christian love and faithfulness!  My brother was at the funeral and left his cell phone so I could be "present" at the service.   I cried my eyes out....every tribute to her was right on target.  Her death was a loud "punctuation mark" to her life, well-lived for Christ and others.  My "take-away" from her funeral is that I am a spiritual "SHRIMP" (and a whiner).   I rededicated my life to the Lord after her funeral - to live only for Him and <all for Him, and lovingly help others as much as possible.  My husband wrote these words on a beautiful sympathy card he gave me:  "On Sunday, March 1, 2009, your Aunt Tillie finally got to meet her Savior - the One she confessed her sins to and was saved by, the One she sang about and talked of.   She hoped to see....reality to know!  'Welcome home, my faithful servant, Tillie.  I have been waiting for you.'" 
 
Til next time,
Dominie
 
 
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II Corinthians 1: 4 - "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.