my update

[Guest guest]

After trying to get through to my pain doc since Monday, I finally spoke to him

yesterday about the increasingly intense and frequent spasms I mentioned to you

all last week. He suggested Zanaflex--and when I said that I'd heard of it (from

talking to all of you), he seemed upset that I was familiar with the medication.

I'm worried that he's suspicious of me now, of all things. Which is nuts! I

religiously ask him for the lowest possible dose of a medication, I have all of

my other doctors (pcp, neuro, ortho) consult with him about meds, I've never

" accidentally " run out of a prescription before it was time for a refill.

When he asked how I knew about Zanaflex, I said, " I thought I'd already

mentioned to you that I belong to an online support group for chronic pain

patients, and we talk about different medications. " Hope he's cool with this;

guess I'll find out when I see him next Friday.

He also asked if I'd seen a neuro about the spasms. Arghhhhh -- he SENT me to

a neuro a few months back, and I'd reported to him what that doc said. I

reminded him of that, and he said he wants me to go to the neuro again. Fine,

whatever. I have an appointment for 10/30. I'm a cooperative patient.

And in the meantime, my pcp, who is one of those " concierge " doctors, is

trying to get me a full workup at someplace like the Cleveland Clinic, to try to

get to the bottom of *why* I have all of these nerve problems. Hope something

comes of this.

I now have a custom wrist splint, and another for the elbow. I wear the one

for the wrist almost 24/7; the elbow one is just so uncomfortable and

restricting (yeah, I know that's the point of it! LOL) that I'm not yet wearing

it as often as I should. It'll take me some time to build up to that. The

occupational therapist/certified hand therapist who made the splints said that

he doubts exercise would do me any good at this point--the hand and arm are too

far gone. Which was the answer I kind of expected. <sigh>

My disability application is in the works and they're starting to contact my

various doctors. I just received the daily activity form for me to fill out.

That should sure be fun. Wonder if they'll believe how restricted I am, cause

even to me, who's living this nightmare, it sounds unreal.

I'm tired. Story of my life.

Hugs,

a

[Guest guest]

--- a wrote:

>

> He suggested Zanaflex--and when I said that I'd heard of it (from

talking to all of you), he seemed upset that I was familiar with the

medication.

Grrrr! Why do some doctors seem to be insulted or threatened when

we try to be educated patients! I have a Ph.D. - I could actually

teach *them* a thing or two about science, but somehow I'm supposed

to be stupid and clueless when it comes to my own health. This just

burns me up.

That's the one thing I love about my current pain doc - he loves

that I know how to read a PDR, that I've bothered to learn all the

scientific names of my conditions and that I study up on my meds,

and he encourages me to bring him ideas that I find elsewhere -

including the net - and he even shares my ideas with other patients

when they work.

He's an utter gem. And here's the irony. He may have his license

taken away. He told me this week that after 24 years of perfect

practice, he's being investigated by the medical board because of

the failures of his prior staff (he fired them all in Dec) to follow

the paperwork procedures he'd set up. Yes, it was his fault that he

didn't keep a better eye on his staff, but it is just terrible that

all the patients that he serves so well may suffer because of a

secretary's sloppy paperwork.

I'm utterly terrified. If I lose him, I don't know what I'm going

to do. My PCP has already flat-out told me she'd never write me a

scrip for opiates, so don't come back to her when a pain doc cuts me

loose after " getting me hooked " on a lot of drugs. Her words, not

mine. She made it clear that she wouldn't even help me titrate down

off them. I can't imagine living without my pain meds, let alone

the horror that forced withdrawals would cause. This doctor

literally saved my life when no one else would listen. I'm not sure

how I would survive like that again. He says he has a friend who

could take over his medical management patients, but that's just

scary too.

So send out some good thoughts if you would, everyone, to keep one

of the few truly caring docs who actually understands chronic pain

(not to mention my specific condition, which is a rarity itself!) in

practice and helping his patients.

Cheryl in AZ