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Why don't doctors understand
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 |
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 ;) |
Pain meds
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. |
Hi ColoVet,
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Google: buprenorphine for chronic pain Doc |
((((((( high importance thread for all )))))))))
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. :mad: |
i feel for u.I think all vets deserve the latest,greatest med. care-my dad was a med
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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. |
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Re: just a thought
I am sorry your are having troulbe with your doctors and pain medications. Taking it away, won't make the pain go away. There is an unreasonalbe mind set going on because of all the people who misuse their medications. Those of us that really need them, should be alowed to have quality of life. In fact you should demand that you be allowed to keep your quality of life. That is what is at risk. I go to a private pain specialist, and yes in a state that is going overboard with withdrawing people from pain medication. Fla. My doctor has to be one of the best I have ever met. After two spinal fusions, and my disorder in the ankles, my quality of life would be compromised if I were taken off of them. Because he is willing to treat me, I have been able without fear, to adjust them to a lower dose, and I will try again this coming Jan. Maybe instead of the VA, you see a pain specialist in the private sector and tell him or her what is going on for a second opinion. I really wish for you all the best, and that today you have less pain. Take care of yourself, and I hope things work out for you. ginnie:hug:
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The percentage of people who misuse appropriately prescribed pain medications is actually very small - around 2%. http://www.health.com/health/conditi...9482_2,00.html http://www.chronicpainrevolutions.co...ic-pain/75.htm People who obtain/use meds illegally is a different issue. It's the lumping in, along with celebrity poster children abusers, that in part condone the unreasonable mindset. Google: politics of pain Doc |
Hi dr.smith
thank you for your post. I know there are only a tiny fraction of the people misusing meds. It still makes it tuff on the doctors and patients. I would gladly give my thumb print, or any other information my doctor wanted of me. The meds. make my life bearable and gives me quality of life too. I really hope all those who are in pain, get the proper treatment. Here in fla. that mind set of misuse is a real big thing. I hear daily of someone dying, or being arested trying to procure meds. Even a grandson, stole medications from his grandmother and had her beat up. It is this kind of thing that makes it hard to keep in control. Fla. has a bad reputation in this. take care Dr. smith, I read all your posts. ginnie:hug:
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A doctor would have no need/use for your fingerprint; the government would, and government interference in doctor/patient confidentiality, and/or legislating medicine is a big part of the politics of pain. The practice of medicine should be left to doctors - not the government. More and more pain doctors and clinics are requiring monthly blood tests to insure compliance. Personally, I think that's presumption of guilt. An initial test, or one if a doctor has reason to be suspicious is one thing; blanket testing is another, like blanket drug-testing school kids. There's too much room for error, and not enough for appeal in the event of an erroneous test; the attached stigma is always following a person around. It's also expensive. The problem, as with other illegal drugs, guns, (and I just forgot the third thing I was thinking of) is not the legitimate patients - it's the criminals, and penalizing doctors and pain patients is not going to solve that problem; they will obtain their fix via other channels as they have always done. Pain patients trying to obtain medicine because they are inadequately treated are not criminals, and need to be treated differently than those abusing drugs (some of which are criminals, and some of which are not). I apologize for getting into this. This is what pain awareness month (September every year) is/should be about. IMO, every pain patient should be familiar with Definitions Related to the Use of Opioids for the Treatment of Pain http://www.partnersagainstpain.com/p...ts/A7012R9.pdf and with what the politics of pain are all about, and how it may/will affect them personally. http://www.aapsonline.org/painman/pbmaterials.htm I'll (try to) shut up now, :o Doc |
Re: you are right
You are right, it should be up to the doctors you have, not the government going where it should not be, into private medical records. I think they are going to do this regardless down in my state of Fla. Somebody just sued the governor, as he tried to make a law for blanket testing for all medicare patients. I would hate to have people presumed guilty of doing something illigal. Gov. Scott is trying to do this, even though the people are against it. I like everybody else would have to comply to keep my benefits. Of course I am against what our governor is trying to do. This state has alot of problems with the illicit type of goings on, but what he proposes is not the answer. I am glad to get responce from you since it is in our headlines almost daily. I hate to see people who really have pain issues be turned away from doctors. thanks Doc for your input, and I hope this state can find a place where innocent people don't have to be tested to keep their benefits. If this passes it would set a bad thing in motion for other states. I think they want to reduce the number of people who are on medicare as there are so many in this state. Fair or not, that is what our governor is trying to do. I don't know how to stand against it except by trying to vote him out of office. Any ideas? ginnie
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It's not really up to the governor, but the legislature, which passes laws. That may depend on which side which lobbyists are on. If it flies (and I could be wrong, but I believe it already has in other states, so the precedent may already be set) it could be challenged constitutuionally at either state or federal level (I'm not a lawyer) if it hasn't already. With the current climate and courts...
You're right that it's about denying benefits to as many people as they can. They'll bump people who have anything in their bloodstream that isn't prescribed, and they'll bump anyone that doesn't have exactly the right amounts - either too high or too low. These tests are better than they were years ago, but they're still a long way from perfect (false results) and people could go broke trying to exonerate themselves from some lab foul-up. Two things I'm sure of are it's the wrong way to handle a complex medical issue and it's not about medicine anyway - it's about money. I see the Gray Panthers are still around http://www.graypanthers.org/ (I would hope they have some pull in FL), AARP, and other pain patient advocacy organizations who could tell you better than I how to fight it in specific states. Doc |
are any of the other "retirement" states friendlier? could point out to the fla governor that he would be losing money if retirees go some where else.
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Hi pabb
It seems to be about control, power and money. Fla. is from what I understand the worst of the bunch. The governor I believe is trying to be sued at the state level. The blanket testing he wants is to reduce the number on the rolls of medicare. I don't know about any of the other states, just that this would set a bad example for the rest. I think it an invasion of privacy, and assumes guilt. It would also be expensive for the state to put into action. From what I understand, he would like us to pay for our own testing. Our country needs to get a grip on this situation and not assume people are doing the wrong thing. I also believe we have our rights to put into our bodies what we want. Pain patients get a bad rap. because of the few who do abuse harder drugs. I have had two spinal fusions after reversing the curve of my cervical neck. I will be on pain medications and that is to allow me to have quality of life. My pain specialist is wonderful, but he is so busy these days I feel sorry for him. The paper work that has just increased takes an extra half hour to fill out on each and every visit. I would comply of course if this test were mandated, but I wouldn't be happy about it. I also get infusions so I will be seeing this doctor, probably the rest of my life, or as long as he keeps his practice. Pain can destroy a life, and those that need medications should not be made to feel they are criminals. My home is in trust to me, so moving isn't an option right now. ginnie
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