Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 09-28-2009, 03:24 PM #8
AintSoBad AintSoBad is offline
In Remembrance
 
Join Date: Mar 2009
Location: Eastern PA.
Posts: 1,143
15 yr Member
AintSoBad AintSoBad is offline
In Remembrance
 
Join Date: Mar 2009
Location: Eastern PA.
Posts: 1,143
15 yr Member
Default

Janet,
My heart goes out to you.
And, I understand what you're going through.
I was T-Boned by a tractor trailer in '83. "It" started the moment I woke up the next morning. Pain like I'd never felt before, burning, you know that "Something is Seriously Wrong". Since it was an auto accident, and back then PA had unlimited coverage, I didn't have to get an OK from anyone. In '83, in Philly/Jersey, there were only a few doctors who "KNEW" what this was.
During the next Seven years, I saw literally more than 100 doctors. It got to the point that, I could interview them on the phone, so as not to waste my painful time, driving to see them. Some, were very brazen, (neurologists mostly), and wanted to put me on these meds (which I did before), but insisted well, I must've done it wrong. I just walked out of that office, when I could "tell", this doc has no clue. And, I told them too! I refused to sign their slip for my insurance. I said, if you don't know, you've got no right, to charge my insurance company, because I sure as heck wouldn't pay you!

My chiropractor recognized what I had, (from another patient), and got me in quickly, to see Dr Schwartzman, @ Jefferson, Philly. He knew. I just started crying, not because I had this monster, but because here's a Cheif of Neurology, telling me I'm NOT losing my mind!
I'm still seeing his partner.

It seems to me, after reading all your in put, that your problem, is that you don't have a good enough doctor!
I'm not a doctor.. And, I understand the drug problem in Tennessee. But, from my experience, talking to people and doctors about RSD (I also have TOS, TBI, Thoracic Outlet, Brain Injury) about four herniated discs, Sleep apnea...etc.
My one doctor supervises all my others. He had a small heart attack last year. Many people were traumatized!

So, it seems to me that your biggest job is to find that one particular doctor, who can, and WILL help you!
Write yourself a little "script" for when you call. If you've actually been diagnosed with rsd, say that. Also say that you are getting no relief, to the point of asking about amputation. (That imho, is too far) A doctor should be ashamed!

Can you get to a good hospital? Ask for the cheif of neurology. Let them do a blood test, (for drugs).
This is real, and for quality of life, you might hafto move, or travel out of state. (If you considered amputation.....)

Janet, I've had this and more for 26 years, and I'm really aggravated that you're in this position.

If you'd like, pm me, and I'll call you if you think that might help.

There is so much more that can, and SHOULD be done for you!

BTW,

I take 60mg. methadone/day
60mg. of Cymbalta/day
20mg. of diazapam.
i forget the mg, but zanaflex to help sleep.
Allegra for allergies,, so I can use my CPAP machine to sleep.
Lidocaine patches for pain where the discs are bad. (neck and low back).
and some other things for migraine, my brain, etc. (hmm, they sorta rhyme)?

So, the Methadone should clue you in.
I'm full body, and it does a decent job of keeping the pain under control.

Help is a phone call away. It's just WHICH phone call!
Let your fingers do the walking!

We're all here for you, Janet!

Wishing you the best, and (don't forget your prayers, we're praying for you!)


Pete

asb
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