Amazed at the Dropping of pain patients!!

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

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

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?

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  

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

Hi

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

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!