DOM'S NEWSLETTER
www.fms-help.com
 
June 18, 2007
 
 
THERE ARE 24 TOPICS BELOW IN PURPLE.  MY COMMENTS ARE IN TEAL. 
 
You will find many good articles in this issue!  Be sure to check out #12 (Abuse & FMS), #15 (Cost of Treating Fibro), #16 (Mousetrap Story) and #24 (Dom's Update - Good News Finally) If you need more info on any topics in this newsletter, use the Google search box at the end of the online newsletter.  Cute as they were, I've left off the wiggly little pictures that were in the last newsletter, since they were distracting to some readers.  I'll only use stationery pictures from now on. - Dominie dombush@bellsouth.net 
 

 
1.  READERS WRITE
"You have helped me with so many effects caused by fibromyalgia. I don't know what I'd do if it weren't for your newsletters.  You understand.... that means so much for someone who has no one to talk to regarding this pain in the neck fibro."
[No one truly understands fibro except those of us who have it.  My newsletters from 2003 to the present are archived at www.fms-help.com/newsletters.htm.]
 
"Thank you for all the work you put on your web site www.fms-help.com for the benefit of a big number of people."
[It's my pleasure to pass on info that may help others with FMS/CFIDS/ME.  I began my website and newsletters 11 years ago.]
 
 
2.  PROVIGIL
From a reader--
"I took Provigil for awhile and my insurance wouldn't cover it initially.  I had to get my Dr. to go through the procedure of requesting it for me individually.  It took awhile, but the insurance company did eventually agree to cover it.  In the meantime the Dr. gave me plenty of samplesI did find that after I had taken it for awhile I felt like I was pushing myself beyond my limits.  Same old same old, like when I was healthy and was always on the go go go.  I had to stop taking it and get enough rest and then I didn't take it except when I felt like I needed it, which was usually when I hadn't had enough restorative sleep and then I was back on that cycle again.  I found there is no substitute for restorative sleep."
 
3. TINNITUS
Anyone else bothered by ringing in the ears (tinnitus)?  I have had this for decades, although it is not too bad anymore.  However, other fibro sufferers could use some pointers for this problem if you have found a remedy.  I have to avoid loud noises, such as loud music at church or public events.
 
4. WEATHER
From a reader--
"I have Fibromyalgia and live in Arizona and I feel horrible in the summers. I tried to avoid going out in the heat at all costs. It seems like I do a little bit better from October to March. I am in a Fibro group here and it seems like we all do worse in the summer time. So, I would not suggest packing up and moving here!"
 
 
5. PREGNANCY
From a reader--
"I have had 2 children while having Fibromyalgia and felt about 25% better during both pregnancies.I felt about 50% better while I was breast feeding with both babies and as soon as I stopped breast feeding I started feeling terrible again. I definitely think that the endocrine system (hormones) is a big contributor to our illness!! I definitely don't think it's the only contributor though!"
 
 
6. MANUAL LYMPH DRAINAGE
From a reader--
"The manual lymph drainage that Im doing is from Dr Mark Shaw's site www.beatfibroandfatigue.com and it is a specific routine especially for CFS & Fibro sufferers.  He has researched it thoroughly after being a sufferer himself.  This always lends a bit of credibility to certain treatments.  If you check out his website you can read all about it and see if it is relevant to your symtoms.  To get the actual specific Manual Lymph Drainage routine recommended I had to download his E book.  This is about $30 and he offers a full money back guarantee if not entirely satisfied with results after so many weeks.  Although I have tried  many so called cures over the years I have become disillusioned, I thought it made a lot of sense and was worth a try."
[Dr. Shaw's site at www.beatfibroandfatigue.com is VERY interesting about the autonomic nervous system, lymph system, anxiety, stress, etc. and how all this plays into FMS/CFIDS.]
 
 
7. PARASITES & CANDIDA
From a reader--
"You can be healed by following the juicing and essential oil program that I followed.  All these things are curable. There is no mystery to healing.  You have to get to the root of the parasite and candida invasion.  The essential oils are amazing but are only 1/2 of the equation.  The other half is nutrition.  The two together are an amazing healing combination, done in the correct way.  Juicing is the most effective way to get nutrients since there is no digestion required.  But a great juicer is essential, not the ones that are advertised on TV.  I also juiced pineapples as the Lord led me so that I could get bromelain.  I hope that this helps you and others.  If I can be healed, anyone can."
 
 
8. NITRIC OXIDE THEORY OF UNEXPLAINED ILLNESSES
Got these links from a reader about Dr. Pall's theory of oxidation as the precursor for FMS / CFIDS / MCS.  He also examines protocols by Dr. Cheney, Dr. Teitelbaum, and Dr. Garth Nicholson in light of his theory--
http://www.immunesupport.com/library/showarticle.cfm?id=8075&T=CFIDS_FM
 
http://molecular.biosciences.wsu.edu/Faculty/pall/pall_main.htm
 
http://www.amazon.com/Explaining-Unexplained-Illnesses-Fibromyalgia-Post-Traumatic/dp/078902389X/ref=sr_1_1/103-6953908-9698264?ie=UTF8&s=books&qid=1181681200&sr=8-1
 
 
9. EXERCISE MAKES CFS WORSE
http://molecular.biosciences.wsu.edu/Faculty/pall/pall_cfs.htm
"Post-exertional malaise is a phenomenon where exercise in CFS patients produces an exacerbation of their entire spectrum of symptoms, an exacerbation that the NO/ONOO- cycle model predicts is likely to be due to up-regulation of NO/ONOO- cycle biochemistry. The view that excessive exercise in CFS may up-regulate the basic causal mechanism is supported by some of the pioneering observations of Dr. Melvin Ramsay. Ramsay observed that CFS sufferers who continued to work longest before collapse had a much poorer prognosis than those who were diagnosed early and underwent prolonged bed rest."
[We are NOT lazy, hypochondriacs or malingerers!!]
 
 
10. HEALING FROM FMS/CFIDS
Been thinking....the only people I hear from who have been "healed" of FMS/CFIDS or are well-managed have done it with juicing, essential oils or other nutritional protocols.  Since 1996 I have spent a fortune on nutritional products of every kind imaginable that are recommended for this.  Some things help, most things don't.  More frustratingly, some things help for a few months or years, then stop helping, so you have to look for something else.  The current list of things I use is at www.fms-help.com/what.htm.  Also, see Topic 24 below for some exciting news - I have been feeling great lately!!!
 
 
11.  GETTING DISABILITY FOR FIBROMYALGIA
Good site with simple guidelines: http://www.allsup.com/disabilityGuidelines/criteria-fibromyalgia.aspx
Also, see my page at www.fms-help.com/disability.htm - I have not filed for disability, but many readers have and these are their stories and tips for how to do this successfully.
 
 
12. ABUSE & FMS - RESPONSES
Thanks to everyone who responded to my question www.fms-help.com/061207.htm about whether fibromites have a greater history of abuse than the general population.  Here is one response that I think was very insightful--
"The CDC’s beginning studies on genes and CFS showed that one of the genes that is expressed differently in those with CFS is a gene associated with how the body deals with stress of any kind. I’m sure that with the prevalence of abuse in our society, some of the stresses that CFS sufferers have had is from abuse of some kind. However, the total stresses the body handles over the time period before a person develops CFS is the important factor. These stresses can be anything—whatever causes the body to have to adjust. Our daughter, who has had CFS for 10 years beginning at age 18, used to run a fever any time we took a vacation or trip. She “outgrew” that as she became accustomed to what had to be done to prepare for such an event. I had CFS for over 10 years. I became sick after childbirth and stressful years as a teacher who had to do lots of overtime hours. As a child, we moved every three years. (My father was in the ministry.)  I’m sure that and my allergies played a role in the total stress I endured. I think it would be a mistake to focus on abuse relating to CFS. It’s stress of any kind, and the genetic predisposition to how the body handles that stress. It’s good to remember that stress is associated with “good” events also. I do think people are different in how sensitive they are in general to what happens in life. So personality may play a role in some cases, but studies have shown that CFS and Fibro are not related to any particular personality, race, socioi-economic factor, etc. Studies have shown that definitely more women than men suffer. I think some of the factors associated with CFS and FM are estrogen-related. Remember just the fact that we have hormonal cycles and change so much during pregnancy and the aftermath of childbirth makes a difference as to how much the body has to adjust."
[Since 1996 I have heard from thousands of people with FMS/CFIDS/ME all over the world.  They have different lifestyles, cultures, diets, etc. yet all manifest identical symptoms!  I sure hope some medical scientist will figure this out some day.  If we knew the cause, there might one day be a cure!  For now, we deal with symptoms.  My fibro was definitely the result of severe ongoing stress.  My story is at www.fms-help.com/fibro.htm.  A list of things I use to make my life more comfortable and functional is at www.fms-help.com/what.htm.]
 
 
13.  CANADIAN HEALTH CARE
From a reader--
"Just got your latest email newsletter and I live in Canada and what
you wrote about socialized medicine,
having to wait months to see a
doctor isn't true. Yes for a specialist sometimes you can wait weeks
or months (depending on what the malady is) but not your regular GP
.
As a result of being ill with chronic FM and Chronic Fatigue I can no
longer work and can't afford private medical insurance. I have managed
to find an excellent doctor who is interested and treats people with
FM and I don't have to wait months to see him! So not all social
medicare systems are the same! I am EXTREMELY lucky to have this here
in Canada and in the province that I live (health care is provincially
implemented, not federally). No system is perfect, but at least I know
if I get really sick or have an accident I can go to the emergency
ward and NOT have thousands of dollars in bills to pay afterwards. My
taxes pay for this system and I am happy to pay them for myself and
anyone else who may need it.  I just had to write you to let you know this Dominie.
This system is not perfect but I think our former Prime Minister Trudeau was on to
something when he thought that a strong country is a healthy country
and that in order for Canada to be prosperous and industrious we had
to have a healthy working population and that meant equal access to
health care for all. I think he had something there."
 
 
14. LOCAL WOMAN FIGHTS FOR FIBROMYALGIA AWARENESS
Article about a newsletter reader--go Marty!
http://www.spokesman-recorder.com/news/Article/Article.asp?NewsID=77760&sID=20
 
 
15. COST OF TREATING FIBROMYALGIA
Great article from a reader (the entire article is located at http://www.afsafund.org/update0501.htm).  Here's a snippet--
"When you are battling symptoms of mind-boggling pain, profound fatigue, jumbled thoughts, a wall-banging headache, pain-gurgling intestines, and you haven't had a decent night's sleep in over a week, it would be natural to feel pushed against a wall. Adding to the reckless impact of fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS), is the affect these conditions have on your career, your marriage and relationships, your social life (if you still have one) and your general sense of well-being. Indeed, FMS and CFS can, at times, make you feel out of control.

Unfortunately, the saga of how you struggle each day to be functional and your efforts to hang onto a sense of accomplishment is not the focus of medical journal editorials these days. The obsession is over a "c" word that doesn't convey compassion, care or concern, but it is the language of the financial world: COST.

In the eyes of the medico-legal system, the cost of diagnosing and treating people with FMS and CFS is what they consider to be out of control. As heartless as it sounds, the insurance and health care industries are attempting to use the paucity of research and treatment trials available on FMS/CFS to their monetary advantage. The logic that they are spewing is: if modern medicine can't effectively relieve the symptoms of FMS/CFS to keep patients employed, then maybe therapies should be curtailed or abandoned altogether.

Some of the proponents of this "weird science" have even proposed what they view as a rational way of approaching patients with FMS/CFS. After confirming the diagnosis, health care providers should educate patients about the diagnosis ... so patients aren't left with the costly and insatiable need to consult another doctor. Then a series of two or three inexpensive therapies should be offered, possibly along with a referral to mental health management (assuming that mind-control is an important adjunct to therapy for conditions in which prescription medicines don't work). If the foregoing fails to make a person with FMS/CFS feel better, then the doctor should at least say they are sorry, but that any further attempt to ease the pain would be futile and too costly. Then the doctor should just call in the next patient. Perhaps as an added touch, the receptionist should wish the patient a nice life when they are handed a check for services not rendered.

The above scenario is no joking matter; it has actually appeared in various forms in two distinguished medical journals: Arthritis & Rheumatism and Journal of Rheumatology. Hang in there though, because most physicians who care for FMS/CFS patients are revolted by this less-than-compassionate approach."
[I thank God for you - my newsletter readers - my fibro team!  Together we can share support, understanding and ideas about coping with this illness.  Unfortunately, the medical world still doesn't have real answers for us....yet.  See my 100 TIps for Coping with Fibromyalgia and Insomnia at www.fms-help.com/tips.htm.]
 
 
16.  "MOUSETRAP IN THE HOUSE"
This is a great little story that is going around the net, most recently sent in by a reader.  It certainly applies to those of us with fibromyalgia and why we should stick together--
"A mouse looked through the crack in the wall to see the farmer and his wife open a package.

What food might this contain?" The mouse wondered - he was devastated to discover it was a mousetrap.

Retreating to the farmyard, the mouse proclaimed the warning: There is a mousetrap in the house! There is a mousetrap in the house!"

The chicken clucked and scratched, raised her head and said, "Mr.Mouse, I can tell this is a grave concern to you, but it is of no consequence to me. I cannot be bothered by it."

The mouse turned to the pig and told him, "There is a mousetrap in the house! There is a mousetrap in the house!"

The pig sympathized, but said, I am so very sorry, Mr.Mouse, but there is nothing I can do about it but pray.

Be assured you are in my prayers."

The mouse turned to the cow and said "There is a mousetrap in the house!There is a mousetrap in the house!"

The cow said, "Wow, Mr. Mouse. I'm sorry for you, but it's no skin off my nose."

So, the mouse returned to the house, head down and dejected, to face the farmer's mousetrap alone.

That very night a sound was heard throughout the house -- like the sound of a mousetrap catching its prey.

The farmer's wife rushed to see what was caught. In the darkness, she did not see it was a venomous snake whose tail the trap had caught.

The snake bit the farmer's wife. The farmer rushed her to the hospital , and she returned home with a fever.

Everyone knows you treat a fever with fresh chicken soup, so the farmer took his hatchet to the farmyard for the soup's main ingredient.

But his wife's sickness continued, so friends and neighbors came to sit with her around the clock.

To feed them, the farmer butchered the pig.

The farmer's wife did not get well; she died.

So many people came for her funeral, the farmer had the cow slaughtered to provide enough meat for all of them.

The mouse looked upon it all from his crack in the wall with great sadness.

So, the next time you hear someone is facing a problem and think it doesn't concern you, remember -- when one of us is threatened, we are all at risk.

We are all involved in this journey called life. We must keep an eye out for one another and make an extra effort to encourage one another.

REMEMBER….

EACH OF US IS A VITAL THREAD IN ANOTHER PERSON'S TAPESTRY; OUR LIVES ARE WOVEN TOGETHER FOR A REASON.”

 
17. FREE SAMPLE OF REMIFEMIN
Natural relief for menopausal hot flashes and night sweats--
http://www.remifemin.com/go/remifemin/Home.aspx?alias=remifemin&tabalias=Home
 
 
18. MYER'S COCKTAIL DIDN'T HELP
From a reader--
"This month's National Fibro Assn newsletter states that a recent study showed very good results from patients receiving the intravenous "Myers Cocktail". I want to share my personal experience with this treatment. Five years ago, I traveled 50 miles to an alternative care doctor who was treating about a dozen women with this procedure (with rave reviews from the Dr). I went in 2x week for about 2 months. It was painful since they had a difficult time finding my vein. It was also time consuming with the travel and procedure time. I did not get any relief. A few women who were there with me had been getting treatments for more than 2 months also felt  it was not helping or that they had a little more energy than before. They were continuing treatments because they were like me, desperate to feel better. I stopped treatments after 2 months, again disappointed that another treatment plan did not help."
 
 
19.  I NEEDED THE QUIET
A beautiful poem (author unknown) sent in by a reader--
 
"I needed the quiet, so He took me aside.
Into the shadows where we could confide;
Away from the bustle, where all the day long,
I hurried and worried when active and strong.
 
I needed the quiet, though at first I rebelled,
But gently, so gently, the Cross He upheld,
And whispered so sweetly of spiritual things.
Though weakened In body, my spirit took wings
To heights never dreamed of when active and gay.
He loved me so greatly He drew me away.
 
I needed the quiet, no prison, my bed,
But a beautiful valley of blessing instead,
A place to grow richer, in Jesus to hide…
I needed the quiet, so He took me aside."
                                                
Author unknown
 
 
20. MAGNETS FOR TIGHT MUSCLES
From a reader--
"Re: Tight muscles.  I had knots in my shoulders so tight and painful that my doctor had to spray a freezing agent on them in order to try to get them to relax.  I heard about magnets and contacted Serenity 2000 and ordered their strongest magnetic necklace (it was very attractive too).  I put it on and within minutes the muscles in my neck and shoulders relaxed.  I wore it every day.  I went to my doctor and he couldn't believe the improvement.  Now I only wear the necklace when my muscles tighten up.  I got a magnetic bracelet for my carpel tunnel and my hand hardly ever hurts.  It's amazing.  Hope this helps."
 
 
21. EXERCISE & FIBRO
From a reader--
"RE: exercise - My physical therapist told me not to work my muscles to the extreme as it creates lactic acid in the muscle which in turn increases pain when you have Fibromyalgia.  I do gentle water exercises 3 times a week and have reduced my pain and strength considerably.  It took over a year to start to see results so you have to persevere and be patient."
 
 
22.  YOU CANNOT SEE IT, BUT YOU SHOULD BELIEVE IT
Great article sent in by a reader about fibromyalgia as a painful invisible illness--
 
 
23. PACING YOURSELF
From a reader--
"I've has it since I was 5 or so, but it wasn't diagnosed until I was in my 50s.  I've had plenty of time to figure out what works for me.  Getting the diagnosis let me know what the game is so that I could work out a game plan.  I've found pacing myself to be what works best for me.  I religiously use a timer.  One hour working and 15 minute to half hour rests on a good day, half hour working and half hour resting on not so good  days.  I started using the timer on my days off work about 30 years before the diagnosis.  Now, of course, working is pretty difficult, so I work at home [has a small home business] at my own pace."
 
 
24.  DOM'S UPDATE - GOOD NEWS FINALLY!
For those of you who have been following my miserable 2 year saga of FMS/CFIDS/ME decline (ever since the mold exposure at my former workplace in 2005), you can imagine my amazement to now be feeling alert, focused, energized and alive again!   About a month ago, my husband said, "You were doing better on those products you took a long time ago!"  He was referring to some things I used from 1996-2002, so I went online and re-ordered them.  I noticed a difference in my energy level in 2 days. 
 
I am now having 5 good days out of every 7--maybe soon that will be 7 out of 7!  I have energy, my mind is clear, and I am not "fibro-fogged" anymore!  The world seems like a brighter, happier place!  I am able to accompany my husband on errands around town instead of staying at home utterly exhausted and miserable.  I am also able to go to work without feeling tortured from fatigue.  I felt alert in church this morning and could play the piano with enthusiasm and strength.  It's like the old me is coming back!!!
 
Here are the 4 things that make a HUGE difference for me:
1) a specific OPC product - heals oxidative damage - I feel much more energy!
2) an "all-in'one" powder with vitamins, minerals, probiotics and fiber - nourishes the system and pulls out toxins
3) immune powder - since 2001 - it keeps my sleep from getting messed up 
4) essential oils - I like to put a favorite oil in my diffuser and lie down to relax and inhale....ahh!...wonderfully rejuvenating! 
 
If I keep on feeling this good, I may forget what it's like to be sick!  If you want info on any of these products, please write me at dombush@bellsouth.net.   I also know of some for weight loss.   
 
Dominie Soo Bush
 dombush@bellsouth.net
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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.