I have had many days where I am just screaming (to myself) "JUST CUT IT OFF!!"

When I finally calm down, I realize that is not the answer. As mslday said, there could be worse consequences. Remember that the pain is really in the entire nervous system, including your brain. We "think" it is in our hand, or leg, or wherever, but the pain is really everywhere.

I know when I am feeling that amputation is the answer, I just need to rant, rave, cry, and get past it.

I really wish you well. I hope you can find a pain management doctor to at least get things a little more tolerable.

Mike

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

Hi Pete,
My hubby used to drive a truck but that was before he was diagnosed with RA, now he takes care of me---which is a full time job. I really feel bad that its so hard on him especially when it rains--we both hurt.
Im glad that you got a good doctor, it sounds like you've been thru the ringer with them. Its so extremely hard to get a "good" doctor around here---Im actually surprised that my PM doc was able to diagnose me at all. I was diagnosed with rsd 7 years ago in my right ankle. The pain doc I had back then after trying the nerve blocks finally injected directly into my spine morphine, it helped me walk but I lost the feeling in my toes.
For some reason this PM doesnt want to increase my perocet stronger than the strength that he has me on now.
He thinks that opana 20 mg twice daily with the 7.5/500 perocet twice a day should be good enough for me, even though Ive told him that its not. Ive only seen him 3 times the rest of the time I see his idiot staff who doesnt know anything. I asked for something for the spasms & the swelling in my leg & thats when they told me that the doc had written in my chart that if there wasnt a siginficant change with my pain. I dont see what asking for something for the spasms or the swelling would make them automatically put me on the schedule for the SCS surgery. I know that when my back was bothering me the other PM that I had told me that a SCS wouldnt help my back & I trust him more than I do this PM doc. The only thing is that he doesnt take my insurance anymore so I cant go back & see him.
Im on other meds for my other health problems but what I listed above is the only things that Im on for pain. The opana is new but the perocet Ive been on for 2 years, at first they were giving me 2 perocets every 4 hours,then it went to 2 every 6 hours, then when I went to the PM doc it was the patch & 2 perc's a day. When the patch wasnt working he switched me to opana.
It dang near kills us to travel the 54 miles to the PM's office & thats only 1 way, then you got that plus going into town to get the meds filled, which is another 22 miles there & back to the house. Insurance wont pay for me to go out of state. So its a doubled edge sword---I cant pay for it out of my pocket as I havent gotten approved for disability yet. Even thou it says on their website that crps is an automatic for disability. I have no idea what the hold up is there. I sent them some new information so hopefully that will speed things up a tad. I fired the attorney that I hired--they absolutely refused to do anything, so now Im handling it on my own.
The doc knows that more needs to be done, he just refuses to do it because he wants that 30 grand. It strikes me as odd that everyone knows I need help---the nurses that come to my house, my pcp, the pm doc but no-one wants to do anything. My pcp hands are tired as far as what she can do. Every pain clinic around here does the nerve blocks first---or they wont treat you. If they worked it might be a different story, but all I get from them is the headache afterwards. I dont know how the pm here works but I do have yahoo messenger if that helps any. I dont have long distance on my phone so Im unable to call anywhere outside my local area.
I know that Ive said it before but I cant tell you & everyone else here how much it truly means to me that you all are so helpful to me & answers my questions. Im so used to being ignored by everyone that I ask---its like I dont exist & that I dont matter. After awhile you tend to stop asking. I cant tell you how many times Ive cried after leaving a doctors office. It takes longer for me to get into the car & ride down there then they take to see me & thats even filling out their papers.
It truly means more than my words could ever say---just know that you & everyone else here has been my savior & you've given me some hope that maybe one day my PM doc will get a conscience & actually help me. I know there are people who just want the drugs but you would think that a doctor would be able to tell the difference, but its obvious with what they put me thru that they dont have a clue. Ive told them to come to my house any day of the week & see how I spend my day----needless to say they havent done that---or would that make them human.
I know that I have rambled on enough because my hands are getting tired. lol lol
Thanks so much Pete---I cant tell you how much it means that you answered me. If you have yahoo then we can pm other than that I dont have any other way of doing that. Hope that you had a good day. Thanks again.
Janet

Hi tierd
i Pm you my cell # if you want to chat,,Causalgia 2 is with nerve entrapment,,rsd1 is without nerve entrapment,,,,,,,And I too heard a case study where a woman who had a leg amputated and the stub was so sensitive ,she couldnt wear a prothestic leg,,it was too painful,,then you also have to worry about the spread due to the trauma of the surgery of the removal of the leg,,,rsd is like a perasite..or a cockroach,,looking for a new injury or trauma to invade and set up shop,,,,call me if you want,,i pm you the #,,,,,,bobber