Re: My article to appear in Fibromyalgia & Chronic Pain LIFE magazine

[Guest guest]

Dear Tim,

Because I was verging on apoplectic (as much as apoplexy is possible for someone

with fibromyalgia) after reading your " preview, " I decided it probably wasn't

the best time for me to respond. With time and distance, I feel I can now take a

few minutes to do just that...with drama-free restraint.

Let me state up front, from your picture and general statement about your

intentions, you appear to be a decent guy. Despite the adage about roads and

good intentions, appearance and reality, etc. etc. etc., I'll grant that you are

what you seem and say.

A little about me:

I am a woman in the 5th decade of my life (still can't bring myself to say the

number ... probably psychological repression; no, of that, I'm certain). I was

diagnosed with fibromyalgia by the Mayo Clinic summer of 1995. I've had it,

then, for close to 17 years. From the age of 16, I have worked and loved every

minute of it. I received a bachelor's in English lit ... taught school ... went

back for a Master's in English (TA while getting that) ... taught school again

.... was brought on by the school system as a planning specialist for instruction

.... got my educational specialist degree during that time ... went back for a

doctorate in modern British lit ... That I received in 1994. I taught college

the year after. I was married in 1983, had one daughter in 1985.

Medical issues preceding fibro:

Before I was a year old, I had a series of blood transfusions. The hospital

records say these were given due to pernicious anemia. I have had atrial

fibrillation since I was 20, which has increased in incidence and intensity for

3+ decades after. It was eventually discovered over this time that I also have

MVP (mitral valve prolapse), which causes the value to leak. It, too, gets a

little worse over time ... to be expected as does anything functional. I

suffered severe migraines, anemia, IBS, mono (2X), endometriosis (3 surgeries

.... the last one 2 years ago), rotator cuff problems (cured these myself). These

are the primary ailments over my lifetime. Occasionally, I was given medication

for IBS and Anaprox for endometrial cramping. (When I discovered that my heart

flipped less when I was on the latter, I began taking NSAIDS even more than I

should have, and for many years. That I regret.)

Just prior to fibro:

To celebrate my doctorate, our family traveled abroad summer of 1994. I noticed

over this time that I was having more and more abdominal discomfort. I also

gained 10 pounds. I have never been overweight, ranging 112-115 most of my life

and now 115-120. When I returned from that trip, I was a little over 130 (all

that lovely pasta and bread in Italy)!

When the abdominal pains worsened, I went to my gynocologist. She put me on

antibiotics. When those didn't work, she gave me stronger antibiotics. When

these didn't work, she sent me to a gastroenterologist, who performed all the

necessary intestinal exams. When these showed nothing, I saw another

gynecologist recommended by a relative. I should have read the writing on the

chart when he told me, " These mysterious pains often go away once the uterus is

removed. " Unfortunately, I didn't. I was in intense pain (had been for almost 6

months); I was willing to try anything, and so I agreed to a hysterectomy. That

was December 1994.

Despite the surgery, I was in more pain than ever. I couldn't walk upstairs. I

couldn't sleep. The pain wouldn't let me. My heart fibrillations were worse,

too, so much that, at my husband's encouragement, I agreed to see an

electrophysiologist. He insisted I take propanolol. I had tried a couple of beta

blockers years before; they made me feel like a zombie. Despite that, again at

my husband's gentle insistence, I tried the drug for 5 days, each day a living

hell, each day, his gentle prodding continued to take the pills and see if my

body would adjust. By day 5, I literally hit the floor. I could no longer walk 3

steps, barely talk, barely brush my own teeth. I had to be wheelchaired into

doctor appointments. We both believed my heart was on its last beats. What else

could cause such debilitation to this degree?

The cardiologist said, no, he didn't think it was my heart. Yes, my MVP was

still there, and yes, my atrial fibrillation, but he didn't believe the heart

was to blame for the physical collapse. For months after, I went through every

test imaginable and beyond ... prods, pokes, jabs, MRI's, EKG's, XYZ's....

nothing nothing nothing.

My GP finally suggested I go to the Mayo Clinic. That was July 1995. My husband

went with me. We stayed in an onsite hotel during 3 days of testing ...

primarily heart again, kidneys, colon, blood, bones/joints ... The diagnostic

consensus: fibromyalgia.

Since fibro:

Nothing could be done I was told. I was also told most important was keeping in

Phase 4 sleep, which would help alleviate some of the unrelenting widespread

pain. And so I was given a child's dose of the new drug Serzone (50 mg.), which

I took every night for over 7 years until it was pulled off the shelves because

people began to suffer liver failure (likely those taking the adult dose [300

mg.] for that long).

Over the years, little by little, I learned to cope with this new version of

so-called life. I could no longer work outside the home, but I could work at my

computer for short stretches. I could no longer clean my entire home a half-day

on Saturday, but I could clean one room, 20 minutes of effort, 20 minutes of

rest. I could no longer quickly respond to complicated literary questions that

required a memory that could pull facts out of a slot, but I could, occasionally

and miraculously, write poetry (not so great, I know). I even tried writing a

couple of books... I had to do something besides contributing to the pattern on

my couch cushions.

Gluten Connections

About 7 years ago, a Wisconsin friend told me she worked with a man who was also

diagnosed with fibro and had to quit work. On his own, from Googling galore, he

learned that some people are adversely affected when they eat gluten (wheat,

barley, rye and, by cross-contamination, oats). It took me an entire year to

entertain the notion that I could be one of them. I just didn't believe it.

Finally, at my friend's continual pestering, I got myself tested.

Lo and behold, I discovered I was gluten/dairy-intolerant. After several days of

no gluten, the world lifted ... I went dancing that week! Over the course of the

next year or so, miraculously (or not so miraculously) my IBS disappeared, my

migraines virtually disappeared (from 2X a month to 1-2/yr.), my anemia

disappeared and, most incredibly, my deepest, most unbearable fibro pains

disappeared! What didn't disappear, to my great disappointment, was the rest of

the fibro ride ...the worst, unpredictable fatigue to the point of debilitation

and numbing brain fog.

Which leads me to my primary issue with your " preview " ... and I quote:

" All emotions produce a bodily response, most you do not recognize.

Fibromyalgia, migraines, IBS, CFS, RLS, osteoarthritis, and other disorders are

bodily responses to emotion. " Tim Bartley

That statement alone tells me you know very little about MY body. It also tells

me you are basing your " cure " on your own belief (that " all emotions produce a

bodily response, " which will ultimately lead to XXX... (you might as well insert

every other condition under the sun). Try substituting " gluten and dairy " for

" emotions, " and you might have something. For me, that substitution is not based

on a belief but on a fact. You are basically falling into the same trap of which

you accuse fibro patients ... that your 'emotion' makes you 'believe' thus and

such (translation = that you are sick when you're really not)!

How smug, how coarse, how medieval! ... No, I promised myself I would stay the

logical course....

Ultimately, Tim, I applaud you for wanting to help people. I applaud you for

wondering how. I applaud you for looking into something, whatever the angle.

What I don't applaud is your approach; your own blanket statements as fact,

which are actually based on your own prejudicial belief system that the basis is

psychological; your claim of a " cure. "

People with fibromyalgia hurt for a physical reason. People with fibromyalgia

experience excruciating fatigue for a physical reason. It is the job of those

wanting to " help " relieve these states by putting forth great time and effort

.... by studying large populations of people with fibro, by learning

physiological states at the cellular level. Out of the 5,260,000 fibromyalgia

references at searchingmed.com (atlases, texts, drug info, journals), here are a

few random samples of those who are doing just that:

Decreased Central µ-Opioid Receptor Availability in Fibromyalgia

, E, Clauw, J, , J;, McLean, A, Gracely,

H, Zubieta, Jon-Kar

Changes in the concentrations of amino acids in the cerebrospinal fluid that

correlate with pain in patients with fibromyalgia: Implications for nitric oxide

pathways.

Larson AA, Giovengo SL, IJ, Michalek JE

Eradication of Small Intestinal Bacterial Overgrowth Decreases

Symptoms in Fibromyalgia: A Double Blind Randomized Study

M. Pimentel, D. Hallegua, D. Wallace, G. Bonorris, E. Chow, S. Tabibzadeh, H.C.

Lin,

Los Angeles, California

Increased concentrations of nerve growth factor in cerebrospinal

fluid of patients with fibromyalgia.

Giovengo SL, IJ, Larson AA

Antipolymer antibody reactivity in a subset of patients with fibromyalgia

correlates with severity.

B. , S. Gluck, R.P. Tesser, Janet C. Rice, Ann Meyer

and Alan J. Bridges

Reduced presynaptic dopamine activity in fibromyalgia syndrome demonstrated with

positron emission tomography: a pilot study.

B. Wood, C. II, J. Sunderland, Kerrie H. Tainter,

Fl. Glabus, and L. Lilien.

Now if you want to say you can lighten the burden of fibromyalgia (or any other

physical ailment) by getting to emotional issues and stressors that might be

exacerbating the condition, by all means, say that! And do it! Until then, to

me, you're just another guy who " believes/holds the emotion " that women, after

all, are prone to " hysteria, " and delusions of malaise, and, if we just let them

talk about stuff, they'll be over it and back in the kitchen/bedroom/workplace

like they should be.

Ok, that might be a low blow, but at least it's a stratosphere higher than the

baseless ground on which your " professional belief " stands.

>

> Hello everyone and happy New Year! )

>

> I have been helping people eliminate FM since 2005 and Jan Chambers,

> the president of the National Fibromyalgia and Chronic Pain Association

> (NFMCPA) has asked me to write an article for her FM magazine.

>

> I proved the validity of my method to Jan last year and she has

> graciously placed me on her website under Complementary Treatments and

> will be publishing my therapy method.

>

> If you'd like a sneak peek/read you can find it at NoMoreFibro

> dot org, very top of the page. I think you'll find it really

> interesting. If you do read it please let me know what you thought

> because I can still revise and resubmit it to Jan.

>

> Thanks so much,

>

> Tim Bartley

>

>