Re: Fibro et al..

[Guest guest]

I too, have fibromyalgia which was diagnosed before the RLS, also Ehler

Danloss (connective tissue disease) and was hit with the Chronic Fatigue

virus this year. All have similar symptoms. Marked fatigue, brain fog, in my

case disabling joint and connective tissue involvement and pain. (Think of

all your insides with the connective tissue stuff.... urrrgggg!)

Anyhow, it has severely limited my ability to walk and can't carry more than

five lbs at a time. Groceries will set me back awhile, not to mention getting

them. When I go to the store, I know I'll spend the rest of the day,

sometimes more, off my legs. I use a cane when it's at it's worst. I struggle

to not use it. I fight being disabled. Yeah, I know it's a head thing ;>

Anyhow, gave my new neighbors a show last nite.... gosh, was I embarrassed. I

decided to go for a drive to get out of the apt. for awhile last nite. Had

been unpacking boxes from my move all day. Forgot the cane IN the apt. Came

home just after dark, could see my upstairs neighbor watching me from her

window. The parking lot is on the slightest of inclines, but during the drive

my legs had pretty well seized up. Sooooo... no cane.... got out of the car

and began to try to walk to the sidewalk... was only about 6 feet... took me

20 ft. to get there. I know I looked like the town drunk, trying to get to

that curb. LOL...even started chuckling to myself at the absurdity of the

situation. AND to top it all off, I don't even drink!

I remember telling the Adm. Law Judge at my disability hearing that I'm the

only person I know that gets stuck walking in grass... I don't even try

sand!! He wasn't amused, but he approved my DBL. and that's all that matters.

All of these diseases effect everyone differently. Mine was finally

discovered by a rheumatologist. The PCP thought the RLS symptoms were PLMD,

and when it came to fibromyalgia (diagnosed on first visit with rheumy after

2 years begging with him to go) he said well he knew all about it, after all

he listened to his medical tapes (duh!!). Over the years (20's & 30's)I went

to bone/joint surgeons, (they do what they do best) eight operations later,

nothing had changed. Again... the rheumy recommended that obviously no

further surgeries were necessary as they didn't work! Course the surgeons

were sure the next one would work.

So here I stumble, the only thing I'm absolutely sure of is that medicine is

not an exact science and that there are discoveries to be made... I just no

longer wish, or have the strength to be a quinea pig.

One note I will make... my brother has gotten into the magnet craze and

allowed me to use his mattress pad while he was away on his honeymoon. I

gotta tell you... it has made an amazing difference in the amount of

stiffness in my back and legs in the morning when I get up. Not my feet

though (drat!) I dred the mornings... not only from the lack of sleep but

also from the amount of pain... yes... I'm on meds... but they don't seem to

help much until I forget to take them and then I realize how much they really

are helping!

Anyhow... whereas I usually lurk... when I drop out of the ceiling... I do

get talkative.....

:::::::dropping my .02¢ on the table:::::::::

Steph

Lima, NY

The Crossroads of Western NY!

Just moved here, nice little town, out in the boonies... and last week had

it's very first ever, bank robbery... think there's a relationship?? (hmmm..)

[Guest guest]

Steph,

I found this interesting article on Fibromyalgia and thought it was worth

passing along since so many in the RLS Cyberspace Group also have it.

Barbara

Fibromyalgia Aches and Pains as a " Symptom " of Hypothyroidism:

A Look at the Theories of Dr. Lowe

Dateline: 04/27/99

When muscle and joint aches and pains accompany hypothyroidism, are

they a separate problem -- fibromyalgia -- or is fibromyalgia a symptom of

the thyroid problem

itself?

Fibromyalgia is a condition typically characterized by

musculoskeletal pain and fatigue. The pain can be severe and affecting a

number of muscles, tendons, ligaments and soft tissues.

If you are hypothyroid, and start to develop muscle or joint

achiness, you may be concerned that you've developed fibromyalgia, or even in

some cases even rheumatoid

arthritis. Many thyroid patients with so-called " normal " TSH levels on

thyroid hormone replacement find that over time, they begin to develop more

and more joint and muscle pains and arthritis-like symptoms. Your doctor may

even diagnosis you as having fibromyalgia " in addition to " hypothyroidism or

test to see if you have rheumatoid arthritis.

What you need to know is that what is happening may actually be a

symptom of undertreated hypothyroidism.

Innovative practitioners are beginning to theorize that fibromyalgia

and chronic fatigue are in many cases just a package of symptoms of an

underlying underactive thyroid problem. This idea was discussed here at the

site in Chronic Fatigue Syndrome, Fibromyalgia and Autoimmune Thyroid Disease.

In the course of writing my upcoming book, Living Well With

Hypothyroidism, I had the opportunity to interview and get to know Dr.

C. Lowe, who is Director of Research for the Fibromyalgia Research

Foundation. Dr. Lowe is one of the nation's innovators in the diagnosis and

treatment of hypothyroidism. It might seem surprising that an expert on

fibromyalgia is also an expert on hypothyroidism treatment. But Dr. Lowe's

long-term care of fibromylagia patients, coupled by his indefatigable search

for the keys to resolving their chronic health problems, have given him

tremendous insights into metabolic illness and how to resolve it.

Dr. Lowe discusses his theories in great depth in his own upcoming

new book, The Metabolic Treatment of Fibromyalgia. I was so impressed with

his ideas, attitude and commitment to patients that he is one of the two

featured doctors profiled in my book. He is dedicated to making people well,

and that comes through very clearly in the way he deals with everyone.

Dr. Lowe's years of practice have led him to conclude that

fibromyalgia is, for many people, a symptom of an underlying thyroid problem,

not necessarily a disease unto itself. He feels that the typical patient's

fibromyalgia is actually evidence of too little thyroid hormone regulation of

certain tissues. According to Dr. Lowe:

" In some patients, the inadequate tissue regulation by thyroid

hormone results from cellular resistance to thyroid hormone. In others, the

inadequate regulation results from a thyroid hormone deficiency. So, when I

refer to fibromyalgia, I'm referring to a certain set of symptoms and signs

of too little thyroid hormone regulation of tissues. "

Dr. Lowe has had success broadening the scope of thyroid diagnosis to

include a narrow definition of the " normal range, " and looking at T3

deficiencies and TRH testing --

not just TSH tests -- for more thorough evaluation of hypothyroidism.

If you're in the TSH " normal range, " Dr. Lowe still believes that you

could be suffering from hypothyroidism -- and all its related symptoms,

including fibromyalgic aches and pains. How can you be hypothyroid, yet in

the " normal range, " and declared euthyroid by conventional doctors?

According to Dr. Lowe:

" There are four false propositions of the current endocrinology

model. These are: (1) The only cause of thyroid deficiency symptoms is

hypothyroidism. (2) Only individuals with thyroid function test results

indicating primary hypothyroidism should be permitted to use thyroid hormone.

(3) Hypothyroid patients should only be permitted to use T4 (i.e.,

levothyroxine drugs such as Synthroid, Levoxyl, etc.). (4) Patients' dosages

should be limited to " replacement dosages " -- amounts that keep the TSH

within the normal range. "

For Dr. Lowe, because conventional medical practitioners accept these

unproven propositions as mandates for clinical practice, many patients

develop continuing symptoms of inadequate thyroid hormone regulation. These

symptoms--despite their using replacement dosages of T4--are now defined as

new diseases, such as fibromyalgia and chronic fatigue syndrome, instead of

as symptoms of the failure to

adequately treat the existing problem -- hypothyroidism.

When patients are already diagnosed as hypothyroid, he is not

surprised when they start to manifest fibromyalgia-like symptoms, such as

various muscular aches and pains and difficulty sleeping. When someone has

been hypothyroid, Dr. Lowe believes that over time:

" Hypometabolism imposes a lifestyle that can further complicate the

hypothyroidism. For example, the hypothyroid patient may not be able to

engage in enough physical activity to maintain normal muscle mass. Metabolic

status is critically dependent on muscle mass; the lower an individual's

muscle mass, the lower her metabolic rate. "

Dr. Lowe believes that many patients who develop fibromyalgia

symptoms after a trauma were already hypometabolic before the trauma

occurred. Says Dr. Lowe:

" After learning what the various symptoms and signs of hypothyroidism

are, many of these fibromyalgia patients say things such as, 'You know, come

to think of it, I remember having those symptoms off-and-on since I was in my

early teens.' A short period of physical inactivity after the trauma appears

to decrease their muscle mass and further lower their metabolic rate. It is

after the short time passes, which would permit a significant loss of muscle

mass, that many people develop post-traumatic fibromyalgia.

In many cases, the patients' metabolic insufficiency was probably worsened by

their typical American diet and their not taking nutritional supplements.

To shorten a potentially long story, factors such as hypothyroidism

(even

borderline), nutritional insufficiencies, and inadequate physical activity

become intertwined and interactive in impeding the person's metabolism. By

the time I've seen some patients, the probable interactions of factors that

have contributed to their disabled condition have become almost impossible to

comprehend.

The best I've been able to do with such patients is start working

with the multiple factors that may be currently sustaining their

fibromyalgia, making recommendations and working collaboratively with them.

Usually, I've asked patients to try and muster a few months faith; it may

take that long before they feel better subjectively and before our objective

measures show that fibromyalgia status is improving. "

Most conventional health practitioners do not approach the issue of

hypothyroidism and fibromyalgia in the way that Dr. Lowe does. According to

Dr. Lowe, for most patients, it is best to work with holistic M.D.s or D.O.s.

In particular, Dr. Lowe believes that the physicians best qualified by

philosophy and education to work with fibromyalgia patients are naturopaths.

Says Dr. Lowe:

" When I say naturopaths, I'm referring to those who graduated from

accredited naturopathic medical schools and are eligible to be licensed in

states that license naturopathic physicians. They use both natural and

conventional medicine. Also, in general, they are far more willing to spend

the time needed with patients to do a good job. They are also in general

willing to do the clinical detective work that conventional medicine has for

all practical purposes abandoned. If you live in a state where naturopathic

physicians are licensed, I would encourage you to find a good naturopath. "

For guidance on how to find a good naturopath, see a recent a article

I wrote on finding a Top Doctor.

Hypothyroid patients following Dr. Lowe's treatment protocol have

reported a high degree of success. Dr. Lowe typically starts hypothyroid

patients with desiccated thyroid (i.e., Armour Thyroid). The reason he uses

desiccated thyroid is the higher T3 content than in synthetic T4/T3

preparations. According to Dr. Lowe:

" I have found that many hypothyroid patients also have cellular

resistance to thyroid hormone. Most of these patients don't benefit much from

T4 alone, but some of them do from desiccated thyroid, presumably because of

the relatively high T3 content. Some we have to switch to synthetic T3

because they don't benefit from desiccated thyroid. We've stopped altogether

giving patients T4 alone. "

* * *

Dr. C. Lowe is Board Certified: American Academy of Pain Management, and

Director of Research: Fibromyalgia Research Foundation.

For more information on Dr. Lowe's theories, protocols and upcoming book, see

his website, located at

http://www.drlowe.com

Other Selected Fibromyalgia Resources

" Coping with Fibromyalgia " : A six-part series from Barrett, M.D. and

Deborah Barrett, Ph.D., covering all facets of FMS, including " Improving

through Fitness, " and " Maintaining a Positive Attitude. "

Fibromyalgia Network: A good overview of FMS-related information and

resources.

Fibromyalgia/A Guide for Patients: Detailed review of fibromyalgia (FMS)

developed by Dr. Nye.

Mayo Health on Fibromyalgia : Mayo Health's thorough overview of fibromyalgia

Fibromyalgia Literature: New articles, abstracts, and or reviews of the most

significant articles.