[ColoVet]

Called into the VA today to find out what was going on with my new doctor. The nurse starts reading me the notes, and there are quite a few mistakes, mistakes would impact my care. One said I already had an appointment at the pain clinic which I don't and the second said that I refuse to get lower back shots. It's not that I refuse it's just the idiot the VAMC has hired I wouldn't let work on Rumsfeld (a person I dislike intensely). Now I am wondering what kind of other mistakes are in my medical records.

The thing is, my new doctor seems to think that when I'm weaned off the pain medication my pain will magically disappear! Wouldn't that be a miracle? The problem is that each time I step down on the Fentanyl Patch my pain gets worse. My back is now spasming, something that hasn't happened in more than five years. I hurt in places that I don't remember hurting in before. I'm terrified that when they get me weaned off the pain is going to be more horrible than it was when I started on the meds.

It's not like I don't have a lot of horrible painful conditions. Short list: TOS, RSD, complex pain syndrome, arthritis, DDD, stenosis and the list goes on. Any suggestions?

The VAMC is determined to implement this policy of weaning all veterans with chronic pain but no cancer OFF THEIR MEDS. No case by case basis, let's institute this policy and consequences be damned!

I hope when I get to Denver and the VA medical Center pain clinic up there I will find some sanity. But there is at least a four month waiting list and we can go until the spring anyway. Just had to vent a bit.

There should be a law that every VAMC has a pain clinic. What about all the chronic pain patients that are being created in our war on terror.

When they instituted this policy they didn't even have other modes of treatment in place. What kind of sense does that make?

Anyone with any suggestions or someone I can contact about this please feel free.

Thanks for listening.

Charli

[Leesa]

Hi dear Charli ~ I WISH I had some suggestions, but all I can give you is support.

What is their REASON for weaning you off your meds? Addictiion is a RARE occurance for chronic pain patients -- we don't CRAVE the meds -- we're looking for pain relief, and like you said the pain isn't going to magically go away once you're off the meds!

Most doctors don't have a CLUE about chronic pain unless they themselves have it or if they're a pain doctor. And even some pain doc's are idiots! The spinal injections that you mentioned, rarely work -- MOST people get no help from them at all. And if the FIRST one doesn't work, the second one won't either! DUH Why do they insist on giving you more when they don't work? In the "real" world, the docs get paid from $1,500 to $2,500 to administer them!!!

Have you tried contacting your Senator? Each time I've done that, they HAVE gone to bat for me. In fact, when I was denied for disability (like everyone is once) I wrote to my Senator, Congressman, and even the White House -- and they ALL helped me.

I wish you the very best -- I hope to God you get a doctor with some compassion and "smarts." God bless & please take care. Hugs, Lee

[Peter B]

Chronic pain is a very complex issue to understand and treat, so you may need to be a bit more tolerant and open to options as you seek to get your pain under control. That might sound a bit harsh, but once you understand that the medical profession doesn't have all the answers, drugs don't cure anything, and there are many other factors in play.
Think about spreading your net a bit wider and see what you can find. There is a lot of info on-line if you have the time and inclination to wade through it. Also books.
I have used many professionals in my chronic pain travails, and have gleaned a bit from each but importantly never the full amount from just one. So you may need a variety of professionals to help you make some progress. My pain doesn't appear to in your league, but it stopped me working .
I've seen GP's, 2 pain specialists, chiros, many physios, several masseuses. Each knows a lot, but not everything you need.

Drugs can have a rebound effect and begin to cause pain when removed or reduced. I had this with Tramadol.
Drugs mask the problem and don't cure it. Identifying and treating the causes of the pain might be an option, if they are treatable. Some wear and tear things such as DDD and arthritis may not be. So pain management is just about it.
Diet and lifestyle must also be considered. A poor diet will not give you the nutrients your body needs to repair itself.
Determining what is a good diet is an interesting exercise in itself and is no easy task. As a start, avoid all manufactured products and prepare all meals from scratch.
Get blood tests for deficiencies.
The majority of people have poor diets leading to all sorts of deficiencies. One of which is magnesium, and muscle spasms and soreness is a key indicator.
I cured my similar muscle problems by taking a daily does of magnesium-best thing I ever did.
Hope you can make some sense of this!
Keep on managing your treatments-it is vital that you know and understand it all, and don;t be afraid to question anything.
It's your life.

[Dr. Smith]

Hi ColoVet,

there are quite a few mistakes, mistakes would impact my care.

You have a right to copies of any/all your medical records, which you can then review, and send a letter citing any errors, and requesting correction. This will, at least, have your concerns/objections/explanations on record.

Any suggestions?

Are/would they be open to switching you over to Buprenorphine?
Google: buprenorphine for chronic pain

Doc

[MegaPain]

SORRY A BIT LENGTHY BUT I HAD TO SHARE WITH THIS ALL WHO SUFFER

FANTASTIC PRIMARY CARE PHYSICIAN OF 12 YEARS BUSTED BY DEA.
A CARING PCP WHO GAVE ME HIS TIME, LISTENED, DIAGNOSED ME AS
HAVING CHRONIC TRANSIENT PAIN, MORE OFTEN REFERRED TO AS CRPS.
OVER PERIOD OF SEVERAL YEARS OF CONSERVATIVE PAIN MEDS I HAD
AN EPISODE OF AGONIZING FULL-BODY PAIN AT WORK. NOT ONE TO
DEPEND ON PILLS ALONE I SWAM, RODE BIKE, WALKED, HIKED,
STRECHED. ALL THIS EXERCISE PROVIDED MORE ENERGY BUT ONLY A
TEMP FIX TO CHRONIC PAIN. THIS WAS 1998 AND I HAD NEVER EVEN
HEARD OF PAIN MANAGEMENT, BUT TRIED AND FAILED THE REST
INCLUDING HOLISTIC. PCP STARTED ME ON MORPHINE 100MG SR
ONE DAILY, BUMPING ME UP TO ONE FOUR TIMES A DAY. I DID
BECOME DEPENDENT BUT DID NOT ABUSE THESE MEDS - PCP
WARNED ME OF TOTAL HELL IF I DID; I WAS EITHER GOING TO
SUFFER SEVERELY AT HOME DETOXING, OR CHECK MYSELF INTO
DETOX / REHAB WHICH WOULD SPARE ME AGONY OF
WITHDRAWALS BUT BLOW MY WHOLE TREATMENT PLAN WITH PCP.

DESPITE WHAT SOUNDS LIKE A MASSIVE DOSAGE OF THIS OPIATE
I WAS NOT OUT OF MY MIND HIGH, SIDE-EFFECTS WERE MINIMAL
AND BELIEVE IT OR NOT I WAS PAIN FREE AND NEVER CAME TO
NEED BUMPING UP OF THIS DOSAGE. PERHAPS I WAS THE
EXCEPTION TO THE RULE. NORMAL HDL/LDL TRIGS, BUT LOW
TESTOSTERONE WHICH IS TYPICAL OF OPIATES. ONLY MILD
CONSTIPATION BUT STOOL TO ME APPEARED FIRM AND HEALTHY
AND (SORRY TO GET GRAPHIC) OFTEN VERY LITTLE IF NOTHING
ON TP AFTER WIPING. I'M A HYGENIC CLEAN FREAK SO THIS WAS
A PLUS!

APRIL OF 2010 LETTERS SENT OUT RE MY PCP NO LONGER ABLE
TO TREAT HIS "PAIN MED PATIENTS". HE CONFIDED IN ME THAT
THE DEA ACTUALLY SHOWED AT HIS CLINIC, CONFISCATED
MY AND ALL PATIENT RECORDS. DEA IS NOT A HEALTHCARE
PROVIDER OF ANY KIND BUT A FACELESS / NAMELESS /
HEARTLESS ORGANIZATION NORMALLY BUSY BUSTING METH
LABS, COCAINE, HEROIN ETC. THEY LEFT ME NO TIME TO FIND
THIS "PAIN MANAGEMENT" DOCTOR. IT WAS MAY 2010 AND
SOONEST PM DOCTOR WAS JULY 19TH. NO CHOICE BUT TO
CHECK INTO DETOX AND GO ON SUBOXONE. RELEASED AS
"MEDICALLY SOUND" WITH REFILLS BUT FINDING INDEPENDENT
DOCTOR LICESNED TO PRESCRIBE SUBOXONE THEREAFTER TOOK
A LONG TIME AND ONCE FOUND ***HE WAS NOT SET UP TO
ACCEPT HEALTHCARE CARRIER SO HAD TO PAY OOP!!!! ****

THOUGH I WENT THROUGH HELL UNTIL JULY 19TH, I SURVIVED
HAVE BEEN TREATED BY PM DR. TO CURRENT DAY, PAIN MEDS,
SIX NEEDLE IN NECK EPIDURALS, ONE RF. RF NEVER AGAIN!!!!!
THIS IS MEDIEVIL TORTURE, FRANKENSTEIN PROCEDURE!!!!
FORUM ON RF HAS MADE THAT CYRSTAL CLEAR!!!!!

CLOSING: PM DR. REFUSED TO PRESCRIBE SAME DOSAGE
AS PCP, GAVE ME A BIG LONG LECTURE. STATED WOULD
GO WITH 30MG MORPHINE SR, ONE TID AND OXYCODONE
W/ACETOMETAPHINE FOR BREAKTHROUGH PAIN, ONE
FOUR TIMES DAILY. AFTER 12 YEARS OF PCP'S DOSAGE
CUT OFF BY REVOKED DEA LICENSE, I HAVE NEVER FELT
THE SAME. PEOPLE IN PAIN ARE OFTEN STIMAGTIZED
BY THE BAD RAP ILLEGAL DRUGS LIKE HEROIN OR EVEN
STOLEN DILAUDID OR MORPHINE FROM PHARMACIES GET.
AND THE DEA, WHO I UNDERSTAND HAVE A JOB TO DO
BUT THEY HAVE NO IDEA (AND WOULD THEY EVEN CARE?)
WHAT THIS SERIES OF EVENTS DID TO ME.

[bellanapli]

Originally Posted by ColoVet

Called into the VA today to find out what was going on with my new doctor. The nurse starts reading me the notes, and there are quite a few mistakes, mistakes would impact my care. One said I already had an appointment at the pain clinic which I don't and the second said that I refuse to get lower back shots. It's not that I refuse it's just the idiot the VAMC has hired I wouldn't let work on Rumsfeld (a person I dislike intensely). Now I am wondering what kind of other mistakes are in my medical records.

The thing is, my new doctor seems to think that when I'm weaned off the pain medication my pain will magically disappear! Wouldn't that be a miracle? The problem is that each time I step down on the Fentanyl Patch my pain gets worse. My back is now spasming, something that hasn't happened in more than five years. I hurt in places that I don't remember hurting in before. I'm terrified that when they get me weaned off the pain is going to be more horrible than it was when I started on the meds.

It's not like I don't have a lot of horrible painful conditions. Short list: TOS, RSD, complex pain syndrome, arthritis, DDD, stenosis and the list goes on. Any suggestions?

The VAMC is determined to implement this policy of weaning all veterans with chronic pain but no cancer OFF THEIR MEDS. No case by case basis, let's institute this policy and consequences be damned!

I hope when I get to Denver and the VA medical Center pain clinic up there I will find some sanity. But there is at least a four month waiting list and we can go until the spring anyway. Just had to vent a bit.

There should be a law that every VAMC has a pain clinic. What about all the chronic pain patients that are being created in our war on terror.

When they instituted this policy they didn't even have other modes of treatment in place. What kind of sense does that make?

Anyone with any suggestions or someone I can contact about this please feel free.

Thanks for listening.

Charli

i agree they need pain clinic at each one,keep plugging you'll find that one great caring Doc who will work with you with dignity and BELEIVE YOU!!!about your pain-u don't need weaning off-u need adjusting or trying other meds,treatments!Good Luck.I've been in chronic pain for 32 years-lucky to have great Doc's over the years-u will get there just don't give up

Hi, Peter B:

I, like ColoVet and many other people, have severe chronic pain caused by many different health conditions, the main ones being generalized internal chronic RSD, thyroiditis (also called Hashimoto's hypothyroidism), migraines and other types of headaches, and so on.

Imagine a house without a good foundation. What do you believe would end up happening to this house? I just think this house would, someday, come crashing down. I strongly believe it is the same thing with severe chronic pain, whatever the health condition(s) causing it is (are). For persons to have a good foundation for their chronic pain treatment, they need to find something that works for them, whatever this thing is (a medication or something else). This thing would be their foundation.

For me, this good foundation has been, since September 2002 (about nine years), fentanyl patches. Right now, the dosage of Duragesic I use is 125 mcg (one 100 mcg patch and one 25 mcg patch every 72 hours). I have tried about fifty different types of medications (having no medical insurance and not being able to afford paying for any, I only have access to some medications to control my pain). Without my fentanyl patches, I would not be able to take care of my two-year-old baby boy, I could not work, I could not do any of the activities I really enjoy (sky diving, horseback riding, water skiing, rock climbing, mountain hiking, reading...). My fentanyl patches are not my only pain treatment; I also take Tambocor, Inderal, Relpax, Keppra, Klonopin... I also do physical therapy. I also had seven surgeries on my left knee to help me with my RSD pain, which started there.

You are right when you say drugs do not cure anything (in most cases), but they do help many people keep their pain at a more tolerable level.

Quote: "Drugs mask the problem and don't cure it." It is true that drugs mask (I prefer the term "control") pain without curing it. However, one thing I never forget is that some chronic pain conditions cannot be cured, no matter how hard some doctors and scientists try. RSD is one of them. Of course, some RSD patients are lucky enough to live and see their RSD cured. It is wonderful for them. However, the majority of RSD patients will never see their RSD pain cured. Not only that, their RSD can go from a little area in their body to their whole body (this is the case with me and many others, young ones as well as old ones).

Quote: "Identifying and treating the causes of the pain might be an option, if they are treatable." Like I said in the previous paragraph, some chronic pain conditions cannot be cured. I hope that, soon, scientists will find a cure for RSD and other non-curable chronic pain conditions. I hope this will not just stay a dream!

Quote: "A poor diet will not give you the nutrients your body needs to repair itself. Determining what is a good diet is an interesting exercise in itself and is no easy task. As a start, avoid all manufactured products and prepare all meals from scratch." Unfortunately for me and for some other people, we might have health conditions that cut our appetite off. As a result, we do not want to eat, even the foods we like. This is the case with me. I almost never want to eat and I am almost never hungry, even though I have never been anorexic. The cause for me is my thyroiditis (Hashimoto's hypothyroidism).

Thanks for your information to us.

Hi, Dr. Smith:

Quote: "You have a right to copies of any/all your medical records, which you can then review, and send a letter citing any errors, and requesting correction. This will, at least, have your concerns/objections/explanations on record." Does this apply to doctors' handwritten notes? Several times, when I asked to consult my medical records or to get a copy of them, they removed the doctors' handwritten notes. Is this legal, to the best of your knowledge?

Thanks for your information.

Hi, ColoVet:

Quote: "The nurse starts reading me the notes, and there are quite a few mistakes, mistakes would impact my care." Sometimes, these mistakes are not just mistakes; they are outright lies. In this world, there unfortunately are doctors who will lie about a patient's health condition or pain, just for the pleasure of harming this patient physically and emotionally, for example to prevent this patient from getting the good pain care he/she deserves. I am not just talking about me here; many, many other patients all over the world have been through this.

In my medical records, a lawyer told me I should look not only for mistakes and lies, but also for deffamation, which is illegal. You can sue a doctor for this if you have proof this doctor made deffamatory comments about you. For example, if your doctor says you are a druggie when you know you are not and you have proof you are not, you can ask the doctor to correct that deffamatory statement or sue him/her. It is your choice and your right as a human being.

Quote: "The thing is, my new doctor seems to think that when I'm weaned off the pain medication my pain will magically disappear!" This is one of the most ridiculous things I ever heard. This doctor is obviously not walking in your shoes 24 hours a day, 365 days a year.

Quote: "The problem is that each time I step down on the Fentanyl Patch my pain gets worse. My back is now spasming, something that hasn't happened in more than five years. I hurt in places that I don't remember hurting in before. I'm terrified that when they get me weaned off the pain is going to be more horrible than it was when I started on the meds." If you know you absolutely need your fentanyl patches and some doctor wants to wean you off or cut you off of them without giving you something else that works, fight to keep your patches. It is not easy to do this when you are in pain. I know it because I have been through it. I fought to keep my patches and I have won up until now. Maybe someday I will lose, but I hope not. It is your decision to make.

Quote: "The VAMC is determined to implement this policy of weaning all veterans with chronic pain but no cancer OFF THEIR MEDS." Do they think cancer is the only painful disease? If they take a good, hard look at the McGill Pain Scale, they will see RSD is supposed to be more painful than cancer. The McGill Pain Scale rates many acute and chronic pain conditions to compare them in terms of pain, even if each person reacts differently to pain.

[Dr. Smith]

Originally Posted by kittycapucine1974

Hi, Dr. Smith:

Quote: "You have a right to copies of any/all your medical records, which you can then review, and send a letter citing any errors, and requesting correction. This will, at least, have your concerns/objections/explanations on record." Does this apply to doctors' handwritten notes? Several times, when I asked to consult my medical records or to get a copy of them, they removed the doctors' handwritten notes. Is this legal, to the best of your knowledge?

Thanks for your information.

I don't know the answer to that. It could even be location-specific. Question for a medical malpractice atty.? I've seen message board sites similar to NT that are more law-centric (that's not a real word - having vocabulary access issues today) and some where you can ask a lawyer a general question (like some where you can ask a doctor a general question).

Doc