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"Dosing is Key"
I went to yet another internist (a local M.D., who is also a medical
acupuncturist) in July 2006 when I was desperate to get rid of my 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, Arizona –
about 30 miles from where I live). I bought his book. 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 to 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. 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 spent most of that time in tears of frustration – there was
SO much information)
I started with 200 mg twice a day (in August 2006), 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 my itching stopped completely. I kept
increasing it every week and the changes at first 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.) in Tucson, so I drove up
for one of them. I got to meet him and one other fibro-sufferer, 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 has it been worth the effort!! I have no pain (not even during the cold
winter months), no itching, more energy, and more enthusiasm. Most
miraculously, I’ve started sleeping through the night without getting up
even once to go to the bathroom! I feel like I’m getting my life back! I’ve
had a few symptoms return for a day or so, but all in all, I feel great!
Diane Huckleberry
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