Re: My first partial days...Not meaning to gloat

[Guest guest]

Hey Barb -

I personally couldn't be happier for you! I wouldn't wish this pain on anyone

and if you are finding relief, and sharing it with us too? Well, bless you

then.

I do wish you continued relief and keep us in the loop on how you are doing. I

will be researching this a bit more now.

STL Jane

> Hi again, I truly hope that my last/first post on this topic of " being without

pain for 2 half-days " didn't discourage anyone -- I didn't mean it to sound like

" gloating " in any way, shape or form!

>

> I saw my new doc yesterday, who GETS this condition. My left thigh was notably

better when he re-mapped it! I was profoundly touched with the hope that this IS

working for me. Could it work for YOU???

[Guest guest]

Toni, Deb & Jane,

Thanks for the kindness of your replies! To risk boring some of you, but maybe

helping others...here is more:

Yes, this protocol ain't easy. But I SO want to be well. I never got hooked on

Rx pain killers - came close, but didn't by God's grace.

I'm not on a high dose of Guaif (yet?) - only (1)600mg + 1/2 tablet a day right

now. But it's enough, since some days, when the phosphates are " cycling " out of

my body, I hurt in the weirdest places! Yesterday it was the top of one foot and

the right-middle of my back. I finally gave up and got the good ol' heating pad,

and hit my comfy chair. Took OTC meds. It passed.

Like you, I took herbs too - esp my Valerian extract - and used many products on

my skin that contained them. Avoiding petroleum products, and using herbs etc,

was what I thought was " right " to do. " Natural. " Always good, right??

Not for fibromyalgics, unfortunately (Dr Armand's book explains why). We lack

something (won't go into detail) that keeps the mitochondria normal in our

cells, so that the salicylates in plants build UP in our bodies. When they do,

stuff builds in our muscles at those tender nodes for ex, and we suffer pain.

Our cells don't work right, etc... " Normal " people have no problem with

salicylates, but we do...Guaif stops the cycle of build up. As the muscles get

rid of phosphates, the nodes go down...voila.

So I've stopped herbs by mouth; I've printed off the many lists of lotions,

toothpaste, face products, etc, and threw my stuff out/gave away - and bought

new stuff. (still need waxing strips, argh! you girls will understand)

I'm glad I don't have to elim salicylate/herbs from DIET, only from skin preps.

Otherwise, forget this mess! ; - )

The diet I really hate, but since I'm hypoglycemic I must follow a " Green Diet "

sheet carefully as well. I do slip-up (yesterday's choc-chip homemade cookies

for one) but overall, try to stick to it. I'd lost 2# at the doctor's check-in,

and he was thrilled. When I laughed at that, he reminded me -- hey, it's 25# a

year and a lifestyle change.

Now as for the CFS - I'm a little less TIRED on some days, too. There's alot of

unknowns as to whether the CFS is just FM manifesting or what in some people.

Armand's studies showed that it might be the same syndrome; with some the

fatigue is highest, with others the pain is. I felt fatigue way before pain,

actually...for what it's worth.

And that's enough for now...a long update--sorry. Hang in there, gang!

Barb ~~ [using] " What Your Doctor May Not Tell You About Fibromyalgia " by Dr.

St. Armand and Marek, R.N.

**p.s. - none of this is intended to be " prescriptive, " check with your health

professional or your own good sense in all things.**

[Guest guest]

Lynn, I am glad you have relief and have gone down on your meds! I haven't

suffered serious injuries like some of you, nor have I had FM/CFS for decades or

become disabled, so I'm not going to judge.

But neither should 'we' judge those who choose to manage pain WITHOUT Rx drugs,

right? I still stand by taking as few meds as possible, and will encourage

anyone who resists taking them to do so as long as you can! Doctors love to

prescribe. Some of us just can't tolerate them, and I think they are

overrated/overused at times. It's just my opinion, but there it is - no

judgement, do what you need to do.

I recently asked my great new doc for a depression med, but stopped taking it

when my dry eyes/mouth worsened so badly - I upped my SAM-e dosage and am doing

much better. Some sunny weather has helped too! I know this isn't for " everyone "

but am sharing what happened, is all...

And I do wish you the best of results with your own path!

Barb D ~

>> Do not confuse drug addiction with pain management--as I have said in the

past it was a hard decision to go on KADIAN a form of morphine--I felt I might

become an ADDICT.

> If you already have numerous emotional issues or have a addictive personality

yes you may risk that.