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I’ve been feeling much better – here’s why:
In the past ten years since my diagnosis of fibromyalgia, I have spent
thousands of dollars going to internists, a rheumatologist, naturopath,
osteopath, chiropractor, medical acupuncturist, endocrinologist, and
menopausal specialist. I have tried vitamin supplements such as
FibroResponse (and many more with “Fibro” in the name), malic acid,
magnesium, magnesium malate, picolinate, Noni Juice (and assorted other
“tonics”), colon cleanses, liver cleanses, breathing exercises, stress
management, meditation, yoga, cranial-sacral therapy, massage therapy,
thyroid replacement, hormone therapy, as well as purchasing books, special
beds, and pillows. Nothing has given me an improvement like guaifenesin.
What are you taking? I’m taking an over-the-counter, non-prescription
compound called guaifenesin (gwah-fen´-i-sen). (Nicknamed “guai” pronounced
“gw-eye.”) It is safe, inexpensive, and does not affect or react with any
other non-prescription or prescription drug. Unlike many medications, it
does not lose its effectiveness over time, nor does the dose need to be
increased to remain effective. (Discontinuing its use, however, inevitably
allows symptoms to return. Finding the correct dose is the challenge.)
What is guaifenesin?
It is the modern manufactured version of guaiac and is known to thin
mucus secretions and make coughs more productive, so it is used in cough and
cold medicines. (Guaiac, the original herbal form, was derived from the
guaiacum tree in the mid-1500s and was one of the four major medicines used
to treat rheumatic complaints until the 1800s.) It must be combined with the
additional therapeutic steps described below when used to treat fibromyalgia
syndrome (FMS), chronic fatigue and immune dysfunction (CFID), irritable
bowel syndrome (IBS), Ehlers-Danlos syndrome, intersititial cystitis (IC),
multiple chemical sensitivity, neurally mediated hypotension, restless legs
syndrome, and vulvodynia. (It is not a quick fix and it works rather
slowly.)
What’s the theory behind how guaifenesin works?
The “phosphate retention theory,” which postulates that an inherited
inability of the kidneys to normally excrete phosphate causes a build-up of
phosphates, and the storage of these excess phosphates in the cells then
causes the symptoms. Guaifenesin helps eliminate more phosphate, thus
allowing cells to release the excess phosphate they’ve been storing.
Guaifenesin does not repair the kidneys, so guaifenesin must be taken
continually to maintain proper phosphate elimination. (And, again, it’s just
a theory.)
Aren’t you skeptical? Of course!
That’s why I haven’t sent this information out until I experienced some
extraordinary improvements. Plus, given my previous experience with
scientific studies (improvement on a placebo), I know I can make anything
work for at least six months. So although I don’t think or feel that some of
my improvements are a placebo effect, I may not know that for many more
months, or maybe even years. And, as one doctor suggested, “Who cares, if it
works?” (and “doesn’t cost much” is my added requirement). Also – it
supposedly only helps 80% of those who use it correctly. Why not the other
20%?
What are the additional therapeutic steps to taking guaifenesin?
1. The most important (and time-consuming) step is avoiding salicylates
(sa-li´-sa-lates), because salicylates block the effectiveness of
guaifenesin for this treatment. Some who previously tried guaifenesin did
not realize that there were differences between the “immediate-release” and
“sustained-release” form, and significant discrepancies in the
extended-release brands of guaifenesin, which was finally confirmed in
October 2003 by the FDA (which phased-out all but one brand that proved its
efficacy). Then it was discovered that salicylates block the efficacy of
guaifenesin, which accounted for many thinking it was not working.
Salicylates are found in toothpaste, shampoos, soaps, cosmetics, and many
other products. I spent three weeks just going through every product I use
that is absorbed through the skin (there’s a website to help you do this).
In general, most of the products (soaps, shampoos, cosmetics) I substituted
were cheaper than the products I previously used.
2. Recognize the symptoms of reactive hypoglycemia, and if necessary
restrict sugary and starchy carbohydrates.
3. Finding the correct dose. This requires keeping a pain journal of
symptoms (otherwise, how do you know some other factors aren’t causing an
improvement or worsening?).
Why is it difficult to find what dosage to take?
That’s a mystery, because the dosage does not depend on your sex,
weight, what symptoms you have, or how long you’ve had the symptoms! The
correct dosage is when you start to feel better. I started at the
recommended low dosage (200 mg twice a day) and found my optimal dose at 700
mg twice a day several months later. Taking too little results in no change
and taking too much makes you consistently worse. So, you really have to
stick with it and be patient. Again, this is not a quick or easy “fix.”
How expensive is guaifenesin?
I originally bought a box of Mucinex (brand name for timed-release
guaifenesin) at Wal-Mart and then discovered the quick-acting, specially
formulated guaifenesin on the guai website (see below) was much cheaper!
Initially, the guai was costing me less than $10 per month. Now that I’m at
a higher dosage (optimum for me), it’s about $17/month. A lot cheaper than
any other treatment I’ve tried, and this one is working for me.
Why haven’t I heard of this?
Using guaifenesin to treat FMS (fibromyalgia syndrome) and the other ten
conditions is relatively unknown because these conditions are just beginning
to receive greater recognition, and guaifenesin is competing with so many
other products and therapies promoted in books and advertisements. A lot of
these products – from vitamins and hormones to exercises, low level laser
therapy, and special bedding (mattresses and pillows) – can be helpful, and
some control some symptoms in some people. But none of these resolve the
majority of symptoms as guaifenesin does. Since guaifenesin is
over-the-counter and inexpensive, there won’t be a lot of advertising,
except by those who are successfully recovering (like me).
It’s confusing to most people when they hear someone say that a sufferer’s
symptoms were resolved with magnesium or Vitamin B shots, acidophilus, or
other products. Because all that means is that those people were deficient
in those things to begin with – they do not resolve fibromyalgia or
irritable bowel syndrome, or the other conditions. Why does this matter?
Because it confuses the healthy public and leaves those of us with chronic
pain and other symptoms to wonder why no one believes us!
For more information:
The book, Fibromyalgia, Chronic Fatigue & Irritable Bowel: Treating
Symptoms Treating Cause, by Dr. Greg Penniston (2006) [2005 edition that I
have is titled The Guaifenesin Guide], is 100+ pages and sets forth the
history and treatment details.
The website http://www.guailife.com
gives more information and sells products. (Normally I’m skeptical of
authors or websites that sell products – but when it costs less than you can
buy it anywhere else . . .)
Anyone considering this treatment should check out the multitude of product
lists of products that are free of salicylates (and products that are loaded
with salicylates) to see if they’re even willing to try this - at the
Sal-Free Center:
http://www.psha-inc.com/guai-support/sf/Sal-Free/About_Salicylates.htm
And for support and Sal-Free coping strategies:
http://www.geocities.com/fms_guaifenesin/main.html
How did you find out about this? I went to another internist (who is also a
medical acupuncturist) in July when I was desperate to get rid of the neck
and shoulder pain. He discussed the benefits of keeping a pain journal, and
also asked if I'd tried guaifenesin (which I hadn’t, although I’d read about
it years ago). He said he wanted me to try guaifenesin before coming back
for acupuncture treatments (which were expensive, not covered by insurance,
and not guaranteed to work). He told me to take 1200 mg twice a day (waaaay
to much to start with) and avoid salicylates. Huh? So, I googled guai and
found the original doctor's website (Dr. Paul St. Armand) who advocates
large doses and a system of "mapping" (feeling for bumps under your skin)
and he basically said "you get worse before you get better." Well, that
turned me off.
So, when I went to my massage therapist the next week, I told her about it
and told her that I couldn't AFFORD to feel any worse than I currently did
before getting better. SHE was the one who told me about Dr. Penniston and
his book (who, by the by, is in TUCSON). She offered to loan me her copy of
his book, but I told her I'd find it. Well, I found a used copy
(serendipity, destiny, fate) and bought it. I cried when I read the intro,
because he described the misery he'd gone through for over ten years (HE has
fibro also) - the brain fog, slight dizziness (bumping into walls and
stumbling for no reason), itching arms, the pain . . . Then I spent WEEKS
going through the Sal-Free website trying wade through it and make sense of
it all (being in pain and having brain fog made it a very slow process) to
find products I could use. THAT took me a week or so. So, I did a LOT of
prep work, because if it was going to work, I was going to do everything
possible to make it work.
I started August 13 on 200 mg twice a day, and didn’t notice much of a
difference for six weeks – because I forgot that I was supposed to increase
the dosage 100 mg each week until I did notice a difference! So, there was 6
weeks wasted. I increased the dose by 200 mg the next week (instead of 100
mg), and finally the itching had stopped completely. I kept increasing it
every week and the changes were subtle.
The author of the book, Greg Penniston, has free support group meetings the
first and third Tuesdays of each month (6-7 p.m.), so I drove up for one of
them. Got to meet him and one other person, and we discussed my dosing and
it was very informative. He encouraged me to stay at the dosage I was at,
but I kept increasing it a couple more times until I started feeling much
better – then I stayed at the 700 mg twice a day.
Everyone is different – some notice a difference right away, some take weeks
or months; some only need to take 200 mg a day and they feel better, some
are taking 2,000 mg a day to feel better! The dosing and journaling and
trial and error can drive you nuts! So, it took almost three months for me
to find the correct dosage, and now I just need to stay there and see what
happens. Eventually the good days and less pain become more of the norm
(symptoms still fluctuate for awhile).
It’s hard to stay motivated when you don’t feel any changes for awhile, but
boy was it worth the effort!!
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