Amazed at the Dropping of pain patients!!

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Sun, May 11, 2008

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Dear Dr.,

When I read your article, I was struck by the horrid way in which you describe some of the ways that the "Pain Doctors" chose to take final care of their patients. Give them a 30 day supply and a goodbye? Treat them like common criminals, and we all know why it is like this; those common criminals really did mess this up for us and the docs. The responsible and prudent people who treat taking their meds the same way, are the people/patients that get stuck in the middle. We have our side of responsibility to ourselves also, regarding our medications.

A lot of letter writing and talking to the higher-ups, is a great way to get things moving; but when we can't move (literally also), because we don't have our medications that allow us to LIVE and have some quality of life, what happens to us? Lose our jobs because we couldn't walk that day, or the next, or....? The migraine that has you over the toilet and crying does nothing good for anyone. Or is it real good now for the doctor that fired you so he has one less "Medication patient"?

I am a Chronic Pain sufferer, and also a nurse. Hospice is the job that stole my heart away and I will never allow my patients to be in pain, for whatever reason. My mom and dad both died at their homes, on Hospice; I was working as a Hospice Nurse and going to school, when my dad's colon CA had metastized to his liver, and I quit everything so I could be his primary caregiver. I saw firsthand how the patient actually dies in front of my eyes, day by day I watched a Triathalon Senior Division Winner and champion Bodysurfer reduced to a small, weak patient. I would not allow him to be in pain. Unless he was lying to me, (and his S&S showed he was not in pain), he did not require Morphine until the day before he died. He only took Vicodin. Everyone is different. But, not to steer off course, there is NO reason for anyone to experience pain.

After my 2nd back surgery, second day after surgery, I was told that I was becoming incoherent. Of course the Morphine was blamed, and out it came. I awoke to the most horrid pain, this was the "Big Sugery"; the Costotransversectomy with Fusion from the rib head. I can see the concern when a patient has a change in their LOC and the morphine is suspended until the patient becomes coherent again, assess the pain, and decide on another med, or, reduce the dose of morphine. In looking back, and with today being a 9/10 pain I remember that pain well. I was just lying there, curled up in pain, and the doctor did not write anything else but Toradol. No Demerol? I came to him an opiod tolerant patient and he basically did the opposite of what I was told about him by a nurse who works a lot with my Dr. there during phone check-in, "You will not need to be worried about pain when you have Dr. A, nope, no worries, he is tough on pain."

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Bill

5/15/08 10:07am

I agree with all you say. I'm not suggesting this but going on the morphine pump - implanted (by medtronics) has made a big difference even with how I am treated. One, it is a much more even pain management experience (although surgery not the walk in the park it's sounds like on the website). Two, no one can claim I don't need it or that I am abusing it. The morphine goes in, the pump is programed, I come back in 3 months unless something goes wrong. Between that and a good physical theraphist I've gone from living my life 3-9 on a scale of 10 to 0-6 or 7! Yes, I do have some zero time in the morning that I didn't have for 8 years. Check out Medtronics.com and they have a listing of doctors.

peace, Bill

Darrol Cox

5/15/08 2:14pm

I wanted to express my feelings about the current DEA stigma DR's must deal with, and also advocate for a better law/program for those truely suffering because someone else's decision, which would change drastically if they were the ones afflicted with these terrible physical/mental conditions.

Torture is the best way I can describe it...Why would anyone treat others so unjustly, and act like their simply seeking a quick fix by masking the pain with opiates, but what other alternatives are there? I would like to know!!!

I exercise when I am able and keep myself very active, even on most days when I would rather be curled up in a ball praying the pain would go away... It is so frustrating being judged by others because your no longer a "productive part of society" in most peoples eyes, which also includes the DR's we seek help from!!!

I am fortunate, as I do have an excellent mental health therapist whom has done everything possible to help me help myself. Living with chronic pain can leave you severly depressed and stressed, because lack of income, wondering how you'll make it throuch the day... I wish everyone the best; DH Cox

sundial1999

5/15/08 2:50pm

I don't understand that either. I'm a cancer patient and I'm so tired of my doctor playing me with urine test and switching my meds around. I'm paying him to help me.....I don't always need my pain meds but want them for when I do. If they don't see opium in my system I'm scared they will take me off of them. I have some good days so don't think I need to take that strong medication if I don't have to. Can I refuse the urine test and still be okay?

makeupgal

5/26/08 2:18am

Sundial,

I actually just read all the comments from the post I wrote what seems like years ago already!!

You are a cancer patient? Well, you can and should refuse all tests that are there to 'prove' you are not selling the meds!! You obviously know your body very well, and know when you need them and when you don't. Please don't add this fear of being taken off your medications, to the horrible fear that goes along with any cancer diagnosis!!

I would start a search for a center that treats cancer patients, regardless of your state, stage, etc. That is your focus, and you are a patient that deserves as much compassion as anyone in pain. It is the diagnosis of cancer that just floored me when I read your post. How DARE your doctor require a urine test of you? Good God. I am truly at a loss for words.

How about a big hug? ((((((((((((((Sundial))))))))))))))))))))) Keep up the fight!!

Makeupgal

sundial1999

5/26/08 2:33am

Thank you very much for your reply....it's embarrassing for one thing and dealing with the news of stage 4 cancer at 50 (i was 48 when i was diagnosed). I really wanted something different and less mg's but he wouldn't change it. I'm falling asleep but keep send a post whenever you want....

Happy Memorial Da

Denise Coleman

5/15/08 5:24pm

Dear Shauna,

Thank you for writing such a passionate and necessary piece about the need for more doctors to understand the physiology of pain, as well as how pain can best be treated with medications, most specifically opiates. I have lived with chronic pain in my back for over 40 years and have had five spinal surgeries, including a double fusion with hardware, so I can relate to the amount and type of pain you must have and the frustration you experience in efforts to get some relief.

Most doctors do not learn about pain in medical school. Only recently has there been a specialty in pain management, which is a good step, however all doctors, regardless of specialty, should be required to learn about pain, treatment, and how chronic pain differs from acute pain.

Chronic pain is always with you, although it may be worse at times, but even with medication you are aware of the pain that you have lived with for months or years, because our cells don't forget and pain medicines only last a certain amount of time. I cannot even count the number of doctors; orthopedists, neurologists, and neurosurgeons, that I have seen over the years, nor the names of all the pain medicines I have been given. I have taken everything from aspirin to morphine, methadone, vicodan, and numerous others to various degrees of effectiveness. Finally, I found a pain management specialist, an anesthesiologist by specialty, who recognizes the role that pain has in a person's life, and the impact it has on the quality of that life. In January 2000, I had an intrathecal morphine pump implanted in my abdomen and since then, for the first time in all these years I have had days where I can almost forget I have pain. I can honestly say that my pain has been consistently reduced by 80-90% on most days.

The pump works by distributing an even level of morphine to my spine on a 24/7 basis. therefore I do not go through the ups and downs of pain relief we get from oral meds, which take some time to start working, give a little relief and then there is a period where the effectiveness becomes less and less, and only when you are in terrible pain again are you scheduled for another pain medication. Doctors and physical therapists will tell you not to let the pain get too bad, it is more difficult to treat, yet prescriptions are not written on an individualized schedule to meet the patient's pain cycle.

And if it isn't hard enough to educate a medical professional about your pain and what makes it feel better, we now have to be at the mercy of insurance company employees who may refuse to authorize a pharmacist to fill a prescription if they, or someone else in the almighty pharmaceutical industry, do not think you need that dosage, or to receive your medicine on that schedule.

There is much that needs to be done to educate the medical community about life with chronic pain so they can become our advocates with the insurance companies and the policy makers. We are at a dangerous point where policy makers in this country are considering or have passed legislation that would outlaw certain opiates for pain management. The National Pain Management Legislation (I am not sure of the exact name but the Pain Foundation can tell you what it is.) that was introduced in Congress calls for, among other things, increased funding for research on pain management, a national conference on pain and increased education for physicians on pain management and the use of opiates for chronic pain. We should support this type of legislation by contacting our Senators, Congressmen, and Congresswomen.

I apologize for the length of this comment but your posting really affected me. Please stay with me as I comment on one more item. I totally agree with your point of being treated like a criminal, perhaps the ones who should be criminalized are the physicians that don't live up to their Oath for caring for patients. "Do No Harm" is the first point in that Oath, and whether they know it or not, or whether they believe it or not, they are doing great harm to chronic pain patients by not treating them adequately and effectively. But just as it is easier to call all welfare recipients frauds than to actively seek out and prosecute those that are frauds, it is easy to call all patients who need pain medicine criminals who are drug seeking. Do they exist? Of course they do. Is everyone in pain a drug seeker? How ridiculous?

I would welcome anyone who thinks that we are just looking for a high, and by the way a real pain patient doesn't get high, the medicine is used up in the central nervous system fighting the pain, to come spend some time with me and see first hand what chronic pain has taken from me, and what the effect has been on my life. Thank you for your posting and for letting me speak on this issue. Denise

makeupgal

5/26/08 3:09am

Dear Denise,

I am SO happy that the intrathecal Morphine pump has worked for you and is giving you what sounds like the best pain relief you have had in a long time!!

It seems we all agree...(us pain patients), on the subject of what to do with our pain. We all sound like a bunch of very strong willed (thank our pain for giving or helping that trait in us to grow), people that just happen to have pain in our lives. As I have written somehwere here, I have been told by my family that if they could just feel the pain I deal with every minute, every second sometimes, for just long enough to understand what a 9 out of 10 on a pain scale feels like. Then, deal with that for more than 30 minutes before we are rushed to the Hospital like they would (no disrespect, they would just freak out,) but we don't go anywhere. Except try to take care of our lives. I now have to work and I find myself in a very odd spot in my life. Back to the old days of after nursing school and raising my son a single mom. He's now 22. Good grief, HOW DO WE DO IT? I say we go on Oprah. LOL

Take care Denise, and Gentle Hugs to you sweetie.

makeupgal

annie

5/16/08 8:21pm

I am shocked at some of the ways the patients are treated. Your letter just enlightened me more. Working in a hospice is a true measurement of a good soul! My brother died in a hospice of pancreatic cancer. They helped him tremendously! My daughter has just been "almost fired" by a pain management daughter and it stressed her so badly. They did a UA which didn't surprise or scare her because she knew she had taken her meds. He made her wait an extra day for her meds, whil deciding why her pain medication didn't show up, then failed to call it in on time the next day. Her son was having back surgery at 18 and she was so stressed, just getting her meds before taking him to the hospital. Fortunately, he didn't fire her and apologized because the second test showed she had been taking her meds properly. Keep pushing for those in pain and hooray for you! There are a lot of people out here hurting and I can bet you they and thier families don't have to go through all of this nonsense! Thanks! Jewelbug

makeupgal

5/26/08 3:27am

Dear Annie,

I of course, agree with your very passionate post also!! I am sorry for the loss of your brother. I am so glad to read that he had the loving care of the what I believe are 's.

This testing for the Opiate in urine is something new to me! I feel a bit odd, being a nurse and also an educated pain patient for so many years, and now know that exisited!! It seems like such a 'guilty before proven innocent' type of underlying message there to me! 'We beleive that the medication we prescribed you may be sold and will not be found in your system'. My God, what is this all coming to??? And have I just not been associated with the right doctors to know this is a more common practice from what I have read than imagined?

I have been treated at a Teaching Hospital Level I Trauma Center, entire families fly to for the unprecidented treatments available. I never once saw the urine test. There is a Ronald Mc Donald house across the street for the families of Children patients to stay. My Pain Doc now was hiding in an unusual actual Hospital for Pain, including Outpatient patients, like me. No urine test. I have proved to my doctor that I treat my meds as I would a patients, I keep a med journal that shows every med that goes in my mouth and what time it was. No addict does that! But he knows I have never called in for more meds, (or had to), lost them, or any of those horrid things that put us into withdrawl. He would never let that happen to me, and if it did happen, he would believe me. I'd love to work there, and writing this just realized I have to fill that out!

You have so much going on in your life, and your families life, I wish you Peace in your home. Gentle Hugs, and I hope this finds you with no or low pain today.

makeupgal

annie

5/26/08 5:04am

Thank you for your message! Your concern is very much appreciated. Yes, my brother died with angels watching after him in a loving environment. His wife had just died not 2 years earlier from leukemia. He had been taking her to treatment and with her in hospitals for years. We were quite surprised when he called to say he had pancreatic cancer. I believe we walk among angels and am so new to even being told I needed stronger pain meds by the attending pain management doctor that I was shocked to see the response of the other doctors. I've not even followed up with the pain mangement doctor.

Thank you for all the information in your note. Compassion is one of our most valuable attributes and I pray we manifest it more often. It sounds like you have found a good doctor and center. I wish you nothing but the best in your life. I, like you, had never known about drug tests and such in cases like these. I'd never heard anyone speak of it. I think we all need to be better informed as I know there are so many people in this world suffering regularly. Some days are better than others. A pain journal is a very good idea. Thanks for the suggestion. I don't abuse meds either and was totally shocked when a night nurse taking care of me for pylonephritis and stones in both kidneys, just so nonchalantly ignored my calls in the night hours. Well, she came in to give me a Darvocette and to say she would check back with me in about 30 minutes to see if the pain had eased. Stupidly, I endured the pain for a couple of hours because I had picked up very definite vibes that she didn't want to give me anything stronger. My daughter woke up and found me in such pain and went to the desk. We got results then. I was able to find comfort after a short while.

This entire set-up is so new to me and I know lots of others, that I can only hope the journal and my history help. I wish you all of life's best and may your life be filled with as little pain as possible. Right now, I am in quite a bit of pain, but have had a few good days, so I'm not going to complain. God bless you!

wanderer

6/17/08 11:17am

Could you tell me about the BIll of Rights? Haven't heard of it. It sounds like you've gone through hell and back. I hope things get better for you. I've been in chronic pain since a car accident in '94, had failed back surgery in 2000, and have been going to a pain clinic for 4 years. I have a very understanding anaesthesiologist who listens, prescribes meds well, and is willing to try different things. I had one treatment of radio frequency pain ablation which helped my shoulder blade pain immensely. I hope they can help my low back pain as well.

Wanderer

makeupgal

6/30/08 1:46am

Dear Wanderer,

Excuse please my late look at this site, a new job has me in a real whirlwind!!!

If you go to the American Pain Foundation's website @ apf.org , they will have it posted somewhere. I hate to be so general, but I myself have not gone to that site in just too long.

I have seen it posted at my old Pain Center, and also on the wall at outpatient surgery centers. Where I work now I haven't seen it yet, and I also see what I think is too tough of an attitude about those with pain in some nurses I work with, and others that think as I do, that a cry from a post-stroke patient are sounds of pain relief need! The patient happens to be a nurse who was walking down the hall at work one day, and had a stroke.) At 48. She continues to have them. She cries when she is touched or moved. Is this an involuntary cry which is a post-stroke condtition, or is she in pain? It is interesting to see the vast difference in nurses and their beliefs, some very deep-rooted, that the patient just wants the high.

http://www.rsd-ca.org/Pain%20Patients%20Bill%20of%20Rights.htm

That is a link to read the Pain Bill of Rights, provided by the American Pain Foundation.

Gentle Hugs,

makeupgal

Stop by my blog on my own life in Chronic Pain and Other Fun Things @

http://shaunaslifeinpain.blogspot.com

troll

5/ 6/09 7:45pm

Hi fellow pain pts,

I am a 55 y.o. w/f who SUFFERS from chronic pain with C5-6 & C6-7 pain due to herniations and DJD and bulging discs, with pain radiating down my arms and into my hands causing burning, tingling, numbness of the hands and migraines. I once described my main pain as feeling like something was trying to pull the meat off my left arm when I tried to reach behind me or up. I had an episode of LOC due to the sleeping med I was given to help me sleep thru some of the pain because when I tried to lift my head to roll over in bed I would naturally awaken in considerable pain because the time-released pain med I was given had begun to wear off. When I had the syncopal episode (LOC) my sister and mother had to pick me up and take me back to bed. When my sister tried to raise my left arm over her shoulder I was told I screamed, even though I was unconscious. Now my right arm is doing the same. I ended up in the ER, via ambulance, and then admitted to ICU. Oh, I forgot to tell you about being S/P MI (had a heart attack in Nov. 2003 and they decided to keep me overnight for observation because of the LOC but also because I am a cardiac patient who has to take medicine for my heart that I'm also almost out of! (Thus, the reason I need to find another fam doc!) When I awoke I knew what had happened because it had happened once before. The problem is, I don't remember very much about either admissions I was so "doped" up!! Anyway, that's a slightly brief description of my diagnoses because there are several others. I won't go into all of those except to say they cause pain and short-term memory loss, something I hate almost as much as the pain. It's one of the reasons I am disabled and trying desperately to get SS disability now since 3-2004 when I had to quit my job as an office mgr. Yes, you've guessed it. Too much typing and using the computer and holding a phone on my shoulder with my head which doesn't help the neck pain at all and I've done that type of work almost all my adult life. Anyway, where I'm going with this is to tell you my story of why I lost my fam doc and pain doc. They were one in the same. The reason they dropped me after over 10 yrs. of being my doc was that when I went in for my usual monthly visit, they tested me to check what med I showed in my system. This is the first time they've done this. I know you're probably not going to believe me but I had ran short of my Oxycontin 80 and 20mg six days early. I did a very stupid thing. I know you are not supposed to share your meds., but I did so with my daughter who was having a lot of pain due to a kidney infection that was causing burning on urination and severe low back pain that she said felt like it was on fire. The doc Rx her Lortab 10 but she had had to take all of that after 3 mos. of taking it and he wouldn't give her any more. I guess he thought she was going to get dependent on them, too. Please don't jump to the wrong conclusion!! I had already taken her to the doc for this 3 mos. in a row and he wasn't helping her very much. She's still on Bactrim DS another 2 mos. I couldn't take her again because I had no more money to pay the doc with and you can't see them until you paid the OV charge. I have no money coming in at all. I live with my mother and she only gets SS. The rest of my family has been trying to help me but they can only do so much. And to be honest, I just couldn't keep asking them! Well, you know what I did. I couldn't stand to see her in so much pain and I gave her some of mine. Because this happened I did another stupid thing. A friend gave me her some of her Methadone but, as you know when you are in our kind of pain you do stupid things sometimes. The only excuse I have is that I was on so many different kinds of medications I just wasn't thinking straight and completely forgot about the "agreement" form I signed. (You see! I can't even remember the name of that thing!! Dammit.!!!) Anyway, when they saw I didn't have Oxycontin in my system but instead had the Methadone, they dumped me!! After they notified me by "certified mail" that they could no longer be my physicians I wrote to them explaining what I had done. Stupid me! I even went there and tried to talk to them but they told me, in so many words, that if I harrassed them about this they would turn me over to the law and have me prosecuted for dealing drugs!!!!! That hurt so badly and scared the "sh##" out of me. I thought I was going to have another heart attack!!! I ended up having to take 3 NTGs.

Please, please tell me what do I do now? I've already considered suicide. Lots and lots of times. I even knew how I could do it. But, every time I find a reason not to.

Anyway, I need a family physician to give me maintenance care of my heart and my other conditions because I "think" I still have my cardiologist. How do you get medical help when you have no money? I have been told I can't get gov assistance other than food stamps. And I've read a lot of horror stories about going to the ER. And even if I did go to the ER, they would maybe refer me to a private practice physician to see but how do I pay them? I just don't think I can take being treated like an addict, again!!! Where in the world can I go to get help??? Canada or the UK or Cuba like Michael Moore did in that documentary movie "Sicko"?!?

Hell, I can't even do that unless I hitch hike there!!!!

I know I sound like a defeatist and depressed and just downright lost, but it's the way I feel. I can't help it.

Does anyone have any ideas? Because I'm completely out of any options that I can think of. I'm hoping you can help because you seem like some one who would understand and wouldn't condemn me for what I did, especially if you have any children. (I'm also afraid that once another doctor finds out what I did they'll turn me away, because it'll be in my records from my former doctor. Unless, they want to have me arrested, too!!)

Am I a lost case? Should I even be telling anyone about what I did?

Is there help out there?

Desperately in need of HHHEEELLLPPP!

Sarah A.

PS; I'm sorry this post is so long!! It only took me a little over 10 hours to type this because I had to keep stopping and resting!

hate most drs

2/24/11 9:05am

Wow,what a nightmare.Being in chronic pain as well,and also dropped by many doctors.I have zero advise.You cant give your meds away like that.Big no no.Then again,how is it so many people sell these pills on the street?I know two pain doctors,one a two time convicted felon with his license suspended in two states,yet he is still practicing in my state?He is definetly using pains meds and abusing them as he made fun of me when I had mentioned my son had passed and I was busy with funeral arrangements to answer his call.Then at my next visit he did not show up but rather did a in office phone consult.He must have been high on drugs because he had accused me of double dosing?When I was there after the day my meds should have run out?Then there is another one who is also a user.Dropped me and refused to get me my medical records.Well at this point I had had it.A felon questioing my integrety and this other one.The other one gives certain patients better treatment.If your female and he is attracted to you not only will you be treated well,you will get calls at 1 am in the morning.I hope to get both of these soical misfits out of the office.The state stopped by my home and is now looking into the matter,I am suffering from extreme pain of stenosis of choking of nerve desease on four levels severe.Today I will find out if,or what type of surgery I may be able to get.I hope my suffering will end sooner then later.

Amazed at the Dropping of pain patients!!

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