Pain Patient Story

https://doctorsofcourage.org/pain-patient-story/

I received the following well-written letter from a patient 2 years ago. How many other patients are in this same situation?  It is for patients like her that everyone needs to learn that drugs are not the cause of addiction so we can get the Controlled Substance Act repealed.

I need help finding a doctor with the courage to prescribe my medications and increase the doses as needed when I move. I have severe intractable chronic pain, throughout my entire body, due to a 1986 motorcycle crash, where a drunk driver exceeding 80mph hit the motorcycle I was on the back of, literally tearing and breaking my body to pieces and almost ending my life. I obviously survived, however, 33 years later, being 52 years old now, I have a plethora of added conditions that cause a cruel and torturous constant state of pain. I moved to New Mexico in 2009, and it took me years of different doctors, all requiring new tests (i.e. x-ray to MRI, etc.), fighting my way through this completely messed up system with no doctors even close to being qualified to understand or care for my severe and unique condition. I finally have a doctor who, at minimum, feels terrible for me after viewing the few x-rays and MRIs that have been done, and although he won’t raise my medication to the dosage I need to have life quality, he will not lower my dosage because he realizes I’m suffering terribly. Now I’m just barely making it through each day, trying to stay strong. The medical board here is even backing my doctor up with what I do have, as they know my condition is very severe. Unfortunately, I do not have a condition that is technically considered end of life like cancer, and my conditions are mostly all physically impairing and have been dubbed “end of care” whatever that is supposed to mean. Basically, there’s nothing more that can be done to improve my conditions, and I’m one of the rare cases that truly just needs pain relief through the only thing that helps… opioid medications.

I cannot even take most types of opioids, because they just make me loopy in the doses I need, and don’t allow me to function. The only medication that truly works to ease my pain, and keep my brain faculties clear, is the demonized Oxycontin 80mg ER tablets, with breakthrough pain medication throughout the day. The doses I’m on are shy by two pills a day, as the Oxycontin doesn’t last 12 hours as they claim. I do not feel any kind of “high” or loopiness from this medication, only a slight relief from the completely debilitating pain I have. My doctor and nurse, along with myself of course, have been trying to get someone who specializes in pain and opioid prescribing to tell my doctor that it’s ok to raise my dose to 4-80mg ER tablets per 24 hours, because my doctor is just not a specialist in this field, and is afraid to increase my doses. I completely understand his concern, however, he’s sent me to many different so called pain specialists, and in this state as many others, they refuse to prescribe any opioid medications to any patients anymore, no matter how severe the condition. Therefore he’s just stuck in my care as it stands now, which he knows is still keeping me from life quality, but he tried. The state of affairs for a unique patient such as myself is just terrible, and I have fallen into the cracks of the medical system and the opioid crisis everyone is so invested into. They just forgot, or don’t even care, about the patients like myself, who legitimately require opioid medication therapy to survive my severe state of pain throughout my totally broken and increasingly degenerating body. We’ve been fighting to get someone educated and brave enough to tell my doctor it is ok to raise my dose to 4 pills a day, understanding that after 33 years taking opioids for my conditions, tolerance has built up, and what seems extremely high doses to an average person, is nothing to my tolerant state. But there isn’t 1 pain doctor or facility in the state of New Mexico that is qualified to understand this. And Medicare/ Medicaid here has completely cut out Palliative Pain Care in the state. It’s non-existent. So now, I’m completely terrified of my move to another state, as every doctor in the country it seems only has one plan of care for all patients taking opioid medication… lowering dosages and cutting patients off completely, no matter the condition. I’m 52 in May, tired of fighting for proper pain care, sick of being a Guinea Pig to all these “non-opioid” medications that have had scary consequences to my health (I’ve had really bad reactions to them), and invasive procedures that end up causing more harm and pain. I just want to live out the remainder of my life with adequate pain relief for quality of life. My first granddaughter is to be born in late August of this year, and I want to be able to enjoy being a grandmother, playing with and caring for her. But without proper pain relief I will continue to be homebound, unable to enjoy my older years, just as I’ve been unable to enjoy my years after being a victim to a drunk driver and my severe condition continuing to get more severe as I age. I feel I became a victim of a crime in 1986 at only age 18, and continue being victimized by the very medical system that is supposed to be making sure I’m safe and not suffering endlessly. I know other patients with as severe amounts of intractable pain (if anyone even exists with as much pain as me) turn to ending their life as the only way to stop the torture.

That’s very sad and I understand it, but that’s not who I am. I’m a fighter and was made clearly aware, by my orthopedic surgeons who saved my life 33 years ago, that I would end up in severe pain by age 40, and they thought I’d be forced to live in a nursing home. But I refuse to give up my life and independence, and push myself on a daily basis. And now, I want to move to my dream home so I can enjoy the things that improve life quality like nature, green grasses, trees, clear and clean natural water sources everywhere, and most important, my granddaughter! After all I’ve been through and all the suffering, I do not think these final years of happiness and life quality is too much to ask for. In fact, at this point I feel I’ve followed all the rules, cooperated with my doctor even though I still suffer, and I feel it’s owed to me to finally have some peace, decent care, and life quality. As I said, I’ve been strong and have fought for my independence and don’t plan in just “giving up” on quality of life and happiness. But I can’t do it completely alone. I must have a doctor who is willing to give me that life quality care, along with the other care for other conditions I suffer from, and prescribe medications, including high dose opioid medications, that have been proven to work for my biology (I cannot take some of the opioids such as morphine as they just make me loopy), and yet allow me to stay as independent as possible, for as long as possible. I know my doctor currently will do whatever he can for me, including writing a letter of recommendation for care, as he feels terribly for my suffering.   He would even increase my dose to 4-80mg ER per 24 hours if another doctor gave him the recommendation to do so.

The problem I fear so much, is the receptiveness of another doctor in another state to actually take over the prescribing and care. Too many doctors today fear the loss of their licenses so much, that they all have completely stopped any and all opioid prescribing regardless of a patient’s severe condition. It’s completely wrong, unconstitutionally and civilly wrong. We’re all supposed to have the right to life, liberty, and the pursuit of happiness, regardless of our disabilities and medical/ medication needs. I would even consider some part time work if my pain was controlled properly; in fact, that is one of my many desires for life quality, to work again and contribute to society, pay taxes, etc. In fact, I was working, and excelling at work to the highest and award worthy levels before moving to New Mexico, when I was being prescribed 4-80mg ER Oxycontin per day along with the breakthrough medications that I only took if the pain got severe enough. I was excelling above all my peers and truly enjoying my work. But when I got to New Mexico and changed doctors etc., she got my records and prescribed them once, but when a Prior Authorization was needed, she refused and lowered it to 2 per day, which at the time didn’t need the PA as it now does. I deteriorated quickly after that, pushed myself to continue working for as long as I could take it, until I had to be put onto the FMLA due to my inability to even get out of bed many days, and the company I worked for allowed me to continue working until all the FMLA allowed time was used up. I’ve been unable to work since and unfortunately my body has continued to deteriorate with added painful conditions too. But I sure would love to have my pain controlled with medication that works well with my body and be able to work again as well. My mind is still very much intact, and I’m intelligent and talented and can learn just about any task or job fairly quickly, and usually become top employee fast and qualify for promotions. How I would love to feel those accomplishments again, adding to my life quality, giving me purpose, validating my life and ability to succeed. But as I stated, that was taken from me back in 2009, even before “the opioid crisis in America” took such a horrible turn in medical care for so many patients. I need help Doctors of Courage. Help with finding a doctor willing to take over my care without taking my opioid pain medications away or trying to change them, and if possible, even getting a recommendation to my physician currently to raise my medication dose to 4-80mg ER Oxycontin per 24 hours and maybe even reduce the breakthrough medication.

I follow all the rules and laws, take urine tests every few months, have a contract with my doctor, and all the requirements for patients taking opioid medications, and have never had any problems. In fact, my doctor has it in my file as “Uncomplicated Opioid Dependence”. I have so many things wrong or going wrong with my body, they won’t even know what every one is until my autopsy is done at this rate. It’s a terrible system, the medical and medical insurance system. It’s broken worse than my broken body, which is extremely broken. And the really sad part is, in my particular case, my medical conditions that cause my severe chronic intractable pain, are things that are quite viable and undeniable with things like theIr x-rays and MRIs, unlike some of the other pain patients out there fighting for their medications and pain relief that have conditions that aren’t so easily viewable, but I still am being treated poorly, like the other pain patients. I’m a perfect patient subject to use to show how horribly out of control the opioid crisis solutions have affected pain patients. Because my conditions are multiple, complicated, severe conditions, and yet just like every other pain patient, most all doctors, so called “pain specialists” and so called “experts” still use the new “no opioid prescribing”, “opioid weaning” methodology, or what we pain patients call the “One Size Fits All” theory and solution they have come to the conclusion will stop the opioid epidemic. I am a clear case patient that, if used as an example, can verify to all those doctors, specialists, rule makers like HHS, CDC, DEA, Our Government, The White House, Senators, Governors, EVERYONE who has turned their backs on all patients who need pain medication, that it’s a horrible injustice, cruelty, unconditionally wrong to just take this “guideline” and this opioid crisis, and apply it to every and all, rather than using a case by case patient analysis to see if a patient truly requires opioid pain medications, even in high doses due to tolerance or severity and number of years taking opioid medications, just the same as a diabetic needs insulin, or a coma patient who needs a feeding tube. It’s a critical mistake to just stop prescribing opioid medications to everyone as a policy. And I’m the perfect patient to show them how much of a mistake it is. It’s cruelty, inhumane, and against everything true medical care providers are supposed to be doing (caring for patients). It’s torture and we treat our pets and animals better than pain patients at this point. I’m the perfect patient to get a thorough pain diagnostic profile on, and present to everyone who has turned their backs on severe intractable pain patients, forcing inhumane torture and suffering.

I cannot afford to “fly to Washington D.C.” to protest these actions taken, but I’m willing to help any way I can to show our side of this crisis, and how cruel, inhumane, and totally wrong they all are in this methodology they are using in this solution to the opioid crises epidemic, and how patients like me and so many others are being poorly treated, undertreated, and outright ignored and shut out, falling right through the cracks of the system. And how patients like us do not have the time to wait while suffering so badly in torturous pain, for them to “work out the issues”, as they say they are doing, while so many are in so much pain, that death becomes the best option to patients who would have never dreamt of suicide or had mental issues of depression prior to their medications being taken from them and being forced to suffer unimaginable pain.

We should never have to suffer like this, as disabled Americans with legitimate conditions. I’m hoping, when I move, that I can get the help I need to get to the dosage I need. Please let me know if I can help our fight for pain patients. I’m willing to allow full examination or whatever it’s needed, and the history of how I got here as a victim of crime in the first place. Talk about being dealt the worst hand ever! Since I was just barely 18 years old. I’m about to turn 52, and suffering. God Bless Doctors Of Courage!

Having just connected with her again after 2 years, she wrote the following update:

Hi Linda,

It truly has been a very rough time since I emailed you. I never have been able to move, which is truly depressing, and so much has changed, for the worse. My doctor has retired here in NM, and I am about to be completely out of my medications because the new doctor refuses to prescribe anything, and the horrible part, the pain doctor he sent me to literally said he would not continue to prescribe even what I’ve been taking for a decade+ because, and I quote, “my insurance will drop me” he said. Not because that’s the best patient care. As it is a fact that my condition is bad, getting worse, and there is no procedure that can help me, and it’s dangerous. So to answer your initial question I just read from the first email, yes, use my story, I want to be a part of this anyway I can. I’m not sure what’s going to happen to me, but I’m scared and they are putting me back on the Rollercoaster of hell. Tell me what you need from me.

And my response to all pain patients is that you need to learn the REAL cause of drug abuse so that you can teach it to everyone and we can get the Controlled Substance Act repealed. Chasing the CDC guidelines will get you nowhere.  I really don’t see much help even coming out of the Supreme Court decision on the Kahn/Ruan case, because the DOJ can still use the phrase in the CSA “legitimate medical practice” calling anything they want “illegitimate”. As long as the propaganda against opioids is in the minds of the jurors, doctors will be prosecuted and convicted, and opioids will become a thing of the past.

Filed under: General Problems