Living with Pain: Fear and the War on Pain Patients

Living with Pain: Fear and the War on Pain Patients

The recent horrifying state intervention in the medical care of a brain dead pregnant woman in Texas has gotten me thinking across boundaries.

The young woman was found unconscious in her home and rushed to a hospital where she was diagnosed as brain dead. But the wishes of her husband and her parents to take her off life support were denied by hospital administrators, who said state law would not allow them to take the woman off life support because she was 14 weeks pregnant.

In other words this young woman, against her probable wishes and the wishes of her family, brain dead and unable to defend herself, was to be an incubator for the uncertain viability of the fetus in her. Texas state law trumped this woman’s rights and the rights of her family, setting itself up as the arbiter of her treatment, as well as the time of her death. That’s the ultimate in government intervention.

bigstock-man-taking-medication-13886486I don’t wish to reargue the abortion wars, but I do want to explore the similarities between the hospital’s questionable decision and the heavy handed interference by state and federal authorities into the relationship between physicians and pain patients.

As I see it this War on Pain Patients is imbedded in the War on Drugs and the War on Terror. Both wars have identified enemies who are legitimate targets of government repression: terrorists, drug cartels, dealers, and illegal drug users.

Both wars also depend on the government’s constant hyping of fear through a compliant media. The War on Drugs brings us fear of crime, gangs, and guns; and the War on Terror makes us fear suicide bombers, planes, radical Muslims, color coded levels, mosques built in the wrong places, and dark skinned foreigners. Danger, danger, danger.

Another hallmark of both wars is the flood of federal money into states, cities and rural areas. Along with this massive influx of money for law enforcement and military preparedness comes the militarization of our police departments. Many rural police departments have unwanted military equipment bestowed upon them because, as those police chiefs have learned to say, you never know what might happen: Fear of the unknown.

A consequence of both wars is the corruption of our civil rights. In the War on Drugs this can be seen in the deplorable stop and frisk police tactics that sweep up young men of color that leads to the burgeoning incarceration industry, the ultimate in social control.

We have also discovered our government scopes up information on all of its citizens; phone calls, emails and internet searches — and stores this information for future use. Why? To track down possible terrorists. Fear.

Enter the War on Pain Patients. Opioid medicines and those of us who rely on them for some semblances of relief and of life are now another group to be controlled and feared.

It is because of us that pharmaceutical companies have produced and marketed these lifesaving medicines. But as these medicines have been implicated in diversion, misuse, addiction and death, they and we are the new enemy on the block.

Does it matter that there are far more dangerous products available: alcohol, guns and tobacco products that have no medical value but are still allowed on the market to kill far more people than opioids?

I am treated like a potential criminal every time I need a refill of my opioid medication, treated as someone to be feared. Feared by my physician, pharmacist and drug manufacturer, as well as the public at large.

I have to see my doctor every month to get my subscription. I have to fill out extra paperwork at the pharmacy that no other patient has to fill out. And often, when I reveal to someone that I take an opioid, I am met with immediate suspicion and thought of as an addict. Fear.

Governments use fear to isolate and control groups of people seen as a challenge to their authority. People with pain are often in a constant state of agitation as a result of policies forced on us by government, specifically the Drug Enforcement Administration and the Food and Drug Administration.

People with pain need to do the opposite of what is intended for us. Instead of withdrawing into an anxious silence, we need to join with each other in online groups and other organizations to push back against an overreaching government that’s pressing for more control. It doesn’t just have to be pain groups. It can be any social or political group that interests you.

This has the effect of empowering us, involving us again in our communities and retaking the democratic power promised us in our constitution. The effect of this is synergistic. Wherever we become involved, we can push the cause of decent medical care to the foreground.

The people we work with will also begin to know us. And stop fearing us.

Mark Maginn

Mark Maginn

Mark Maginn lives in Chicago where he is a poet, writer and social justice activist. Mark suffers from chronic pain and was a longtime volunteer with the American Pain Foundation. His blog “Left Eye Blind” can be found here.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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vicki strasler

I am a 67 year old chronic pain patient as a result of back problems. The opiod pain medication is the only thing that works. As far as “alternate” pain relief which the doctor keeps wanting to talk about, IT DOES NOT WORK. I have tried it all: chiropractic, physical therapy, massage, water, hypnosis (same thing as the mindful mediation), tens unit, lumbar traction,etc. None of the above things work. It is clear who is in pain and who is not from reading the posts. I have become very angry over this entire “war on pain patients.” It is time for somebody to be held accountable for this shameful condition in our country,

Bill Elliott

I live in Canada and been on morphine since 31. I’m 45 now and was told that half my pain killers that make my life some what normal. I had 3000lbs of solid concrete fall on me from 70 feet in the air. My head was split wide open and brains were lost and I had a big beam across my back wich need to be lifted of by the Crain do I could breath. I had about 7 surgerys do to it. I had a broken neck and ribs and eye socket smashed in but the goverment is taking away my pain meds away. I don’t sell them and I don’t over do them and yes still in pain since I was 21. Been beat up by wcb and now there taking the only thing away that helps me. My morphine!!!!! They should be proud of them selfs because it’s even the guy that can approve there hurting do to MRI s. how does this work for me. I’m in so much cronic pain and they just don’t care. I hope everyone that’s going through the pain start what ever it takes to tell these people with no pain to go you know we’re.

Donna C

I worked as an R.N. prior to developing R.S.D. I often find myself reflecting back to the days of my schooling in which it was embedded into our brains that :”PAIN IS WHAT THE PATIENT TELLS YOU IT IS “. How extremely important it was to NEVER judge your patient. You administered their pain meds that were ordered , according to their level of pain. Well, I have over and over wondered what was the point of all those lectures because once in the real world , i sadly found it most certainly is a different life. Not that i didnt follow what i was taught but what you begin to see around you is sad. I cannot say i truly felt the complete concept until i became the patient. I have never been so belittled , so dehumanized , ever in my entire life. All you want is for someone to care. Someone to please help you and over and over again you are treated like some kind of horrible person. I can remember so clearly being at my wits end one day, prior to being diagnosed. I wound up at the emergency room. I was mentally and physically exhausted from the pain and could not take any more. I was in tears. The Dr. came in and i told her to please help me. The very first words out of her mouth were ” well, I’m not giving you narcotics ! ” Her tone was horrific. I could feel the anger welling up inside me. I suppose beneath the anger was a ton of hurt. My reply was ” I didn’t ask you for any narcotics ! And actually, I don’t want anything from you !!!! I marched away and as i approached the exit door i looked over at her across the nursing station and told her i thought she should consider taking a course on bedside mannerism. That was just one encounter. I have never taken any strong medication until now. For breakthrough pain i take tylenol # 3. I was offered percocets but told them i did not want them as i was given them once for migraines and did not at all like how they made me so sick. Not only do i have this terrible illness that has taken away my job and changed my life in every aspect, now i feel as though i get treated like some sort of criminal or drug addict. They demoralize you when you are already fighting daily to just survive !!! It’s inhumane !!!

I know I’m late getting in on this article, but Mark is my friend and so I wanted to say something.
If I do nothing else on this earth, I will FIGHT to the BONE for pain patients RIGHTS! as long as I’m able.

Please… I’m asking everyone to visit their local state reps office and tell them what kind of hell we are living in now days!
Actually I had a couple members go see their reps face to face, and guess what? The reps had NO idea on what pain patients have been going through to get meds filled much less get enough of them to take care of their pain.

I found this odd because hundreds of us have written so many emails and letters to them with only form letters returned to us. So please know? They don’t know. Our governor office won’t even help us because he against legal pain drugs ,cause his brother was an addict.
Sorry Governor but that’s not everybody and your working for us, the citizens of FL.
Please all of you reading this? You can possibly make a huge change by going to see your rep today or make an appointment.
Were losing our rights more each day. Are we just going to sit here and allow it? I would hope not because after all, WE ARE AMERICAN PATRIOTS! Communism is coming our way, we have to speak out and stop it Now.

Thanks for your comment and advice, Steve. Yes, whenever anyone hears it’s the law or policy, do exactly as Steve advises and ask to see that law or policy in writing. Usually it’s just crap. Don’t take no for an answer. Be patient and keep demanding to see the document while mentioning that you will talk to a lawyer about being treated fraudulently. The only way to fight back against these liars is to simply fight back. If they can’t produce the documentation to back up their claims, insist on getting what you deserve or have been prescribed. It is certainly okay to make a scene. In fact, waiting until there are a number of people present is a good time to make that scene. Remember, they expect acquiescence, these people are ultimately cowardly.

@Alfred.
If I may give you insight into the inner workings of medicine;
You sister is the victim of modern “we can fix anything” medicine. Get a new doctor and a fresh opinion from someone who will take the time to truly figure out the proper treatment for her. NO matter what they find, she will still need a team of mental health, medicine management and ongoing physical therapy, daily, weekly and monthly.

You sister is in pain because of the AMA and the RUC committee has put up a wall against alternative therapies. This is the therapy that will help your sister heal.

They lied about the Obamacare restrictions which has noting to do with the standard of patient care or whether your sister can get pain medications. The ACA is about giving all Americans a fair chance at reasonably cost health insurance.

The Government has very little to do with the daily workings of healthcare. The AMA, big business and drug makers and a lot of misguided doctors have been screwing around with it for a few decades and are winning and will continue to win because they have a lobby and grease the palms of your state’s reps.

WE are the government so turn that anger into action and call your legislators and demand alternative medical options in the form of Acupuncture, massage, chiropractic adjustment, dry/wet needling etc.

Anytime someone – in authority – tells you that they can’t do that because it is the law.. just ask them to tell you where you can find a copy of that law..

An example, my mother in law was in a ADL unit and she asked for her pain meds and they gave her Tylenol.. not the Hydrocodone that was also ordered.. when I asked the nurse.. why they did not comply with her wishes.. they stated that was “the policy”.. I just asked them to show me that policy in writing.. in their policy and procedure manual and it was like “deer in headlights”.. the nursing staff had just made this policy up and couldn’t back up their actions/in actions in written policy.

It has been my experience, that when someone doesn’t want to do something.. they will state that .. that is the rule/law.. but.. when you ask them to show you the rule/law in writing.. typically they can’t .. because someone had pulled that rule/law out of their lower posterior orifice .

Alfred

Today I went to the Hospital to pick up my sister who had to be take in because she is in chronic pain, she has had 3 back surgeries, knee replacement, and can no longer be operated on because of a tumor on her adrenal gland. They tell her at the hospital they are not allowed to give medical help or any form of relief to a chronic pain patients, because of stricter control on pain meds that were written in Obama care law. I cannot for the life of me understand these political leaders who do what ever they want with no consistency, for example a woman has an unwant pregentcy and can kill the life within her because as they say it is her body, but if I am suffering I don’t have the right to put whatever I deem necessary to relieve that suffering without first going through the medical system and then have the government get in that and tell a doctor what an how medication can be prescribed, what happened to my body my rights? Do me a favor government get out of my business and off my back, I am intelligent enough to do research and determine what I need in form medication an doctor care so that I have the will to even live. A society can have no more dangerous a citizen than to get a person who is suffering so much they don’t want to live and are also desperate they don’t care who they hurt but will do almost anything to stop their own suffering. I can say this if I did not have a faith that stopped me from takng somethng that is not mine, when I saw my sister crying in pain and unable to get relief, I could have then truly became dangerous by walking into a pharmacy with a gun and demanded every pain med they had, not to sell not for myself but to just ease or reduce the suffering of this person I love and care about. The government need to let people get what an how much medication the need without interfearance from the government. DON,T TREAD ON ME!

@Mary M, You are a victim of the war on “Alternative Medical” therapeutic options. Your case is the status quo of high-tech modern medicine failure and a good opportunity to get the word out on the best of integrative care. The scientific community has been co-opted by dogmatic mechanical scientist. These scientist have been trained to see medicine in a narrow view driven by less that altruistic entities. All the evidence is old as penicillin for a reasonable mind to comprehend. The missing link today are the age old “word of mouth” history and hands-on touch examination. They have ignored the obvious just because it can not be proved … yet.

Hard to believe that a simple defect in a muscle can lead to such pain and agony. How could such a genetic flaw in human muscles drive such a miserable disease that will cause someone to want to commit suicide. Yes it’s as true as the air you are breathing. The defect is a malformed muscle fiber “repair” call Trigger Points. These defects began to make muscles weaker, erratic, stiff and shorter compressing vital structures and even restricting it’s own nourishment. Auto-self feeding. Once your flesh has been invaded with TrPs in the muscles they can actually re-seed, grow and spread to other parts of the body just like a cancer. In your case, you have a very high invasion count and spread into your spinal column architecture. RSD/CRPS is the result of this metastatic pain cancer and it can STILL get worse!

ALL of your pain and disability is treatable!!!

You must roundup an “alternative” medical team to get you out of your situation. You life depends on it. The treatment for this defect has to be in the form of manual labor from hands on therapy and with needle intramuscular stimulation. The needles can be with either an acupuncture needle or a hypodermic needle called dry or wet needling, trigger point injections. You will need long term daily, weekly and monthly care for a long time. Get started as soon as you can because this type of pain will not go away without therapy.

Don’t be distracted by a quick fix pill or surgery and don’t be let down with they tell you “there is nothing on a scan, X-ray, MRI or in blood test, this is a “no-see’um” type disease. Stay focused on your care and be proactive because myofascial disease is fertilized by stress, mineral deficiencies, fear and time without therapy. The longer you take to start the longer it will take to get better.

Godspeed young lady.

Dave

Of course pain care problems are primarily a moral issue in America- though government and medicine would prefer to avoid such discussion and relegate all issues in pain care to being technocratic. People in pain lack the political capital to stand up to the poor showing of morals from government and medicine-and until people overcome the poor morality of government and medicine when it comes to pain care there will be a continuing escalation of failure in pain care and the dried voices of people in pain-and those who really care about them will remain mute and meaningless and distant as fading stars to the powers that be until people in pain unite and take a moral stand to change pain care.

Mary M

So True. I am 22 years old. I have RSD/CRPS and fibro. have had RSD/CRPS for over 8 years. The initial injury that caused the RSD I was 13 almost 14! Despite this- i never took anything stronger than ibuprofen for ANY REASON (other than what was administered during an upper gi Endoscopy)- in my ENTIRE LIFE. Finally my second year of college, (at the time I was going full time, 13+ credits a semester, dorming, 3-4 hours away from my parents and my pain doctor and primary doctor). Obviously cause of the distance (especially being out of State, I was in NY, my home doctors were in NJ), there was limits to what can be done “over the phone”. I was already coming home almost every week (yes traveling 5 hours via 4 forms of public transit each way) to go home most thursday nights for friday appointments. I caved and went to the local ER near my college. There i had my first perocet 5-325 mg. Since i was so far from my doctors at home they wrote me a script for 5 more to take “as needed” till i could me with my doctor at home and decide if i need more. First time i had ever taken a perocet. My pain had gone from a 9 out of ten to a 3 out of ten with just that pill- and actually remained low for days! Those “five pills” that were written i didn’t use them all until over two months later. I am very cautious with these meds. I now am living back at home. I now take low dose oxycontin (10 mg 2x a day) and a 5-325 mg perocet for breakthrough if needed. But i’m constantly given “oh you are so young” you cant have these meds. As if i can choose my age. I was sent to the ER after an outpatient treatment for my pain that was done in the fifth floor of the hospital. the ER doctor verbally attacked me saying I had no business in the ER- it is a chronic condition they don’t manage chronic conditions- I have to follow up with pain management on the next day. Which because by that time it was a Friday 5:15 pm- meant i would not be able to call pain magmt till Monday 9 AM (they do not have an emergency on call line for patients- it says if there is an emergency go to ER). I wasn’t expecting long term management in the ER, but i couldn’t get ahold of my doctor at that point. I had been SENT There by my doctors COLLEAGUE! I wish i didn’t have to take these meds- i actually HATE when they make me feel “loopy” or “HIGH”- i can’t believe people WANT to feel that way. I always am EXTRA Careful with my meds. If i am unsure if i can take an extra pill- I WONT. I’d rather suffer in pain than… Read more »

Thanks for your comment Stephen, I hope to expand on this in my next column coming soon.

Erika

Another excellent column! Mark, you are so right.

In 2012, we have the ability to keep a human body alive for a few years, it does not mean we should beyond a person’s or family wishes. The hospital board should have only considered the moral and legal issues. I get the feeling that there is a political and religious agenda.

“A consequence of both wars is the corruption of our civil rights.”
In my opinion, the war is on life, liberty and the pursuit of happiness! Political and religious entities are using deception in the media and scientific community to distort what was gifted to us by our Heavenly Father and Founding Fathers. They have stolen our inalienable freedoms and rights by distorting the lines between political, social, economic and religious values. Then they mix in hate, blame and resentment, separate out the teams “The Makers” and “The Takers.” Put all these elements in an arena and then they sit back and watch the savagery. All for profits, power and status.

Humans have been treating pain with safe effective low or no technology but due to the fog, no one can see or even want to know.

Diane C

Great article. As a 60 yr old who suffers with chronic pain, I am very offended to be treated as as junkie & denied relief.

Malcolm Kyle

Prohibition has finally run its course; the lives and livelihoods of hundred’s of millions of people (users and non-users) worldwide have been destroyed or severely disrupted; many countries that were once shining beacons of liberty and prosperity have become toxic, repressive, smoldering heaps of hypocrisy and a gross affront to fundamental human decency. It is now the duty of every last one of us to insure that the people who are responsible for this shameful situation are not simply left in peace to enjoy the wealth and status that their despicable actions have, until now, afforded them. Former and present Prohibitionists must not be allowed to remain untainted or untouched by the unconscionable acts that they have viciously committed on their fellow human beings. They have provided us with neither safe communities nor safe streets. We will provide them with neither a safe haven to enjoy their ill-gotten gains nor the liberty to repeat such a similar atrocity.

Dennis Kinch

You’re so right. The War on Terror and the War on Drugs create FEAR as the catalyst for the laws created by the “do-gooders.” These are the people, who, since the 70’s have been out to protect us from ourselves but use the extreme minority to justify their ridiculous actions. As usual, the minority still gets away with it, the large majority suffers and the “do-gooders” make a lot of money. Since we are the large majority, over 75 million of us, as you stated so correctly, we need to join up, sign in, find groups, and then they must unite, like a Board of People in Pain, set standards for doctors, for insurance companies, for employers and legislators, and be a voice of POWER. We have the power…it’s just that it’s sleeping right now.

As Mark so well pointed out.. as a country we seem to like to “fight wars”.. the 100 yr war on drugs… Prohibition was a “war on drunks ?”.. then there was “the war on poverty” or the war on the poor.. then we had the “no kid left behind”.. or the war on dumb kids.. we have had civil wars and racial wars.. the last war in which there was really a declared winner was WW II and that took two A-bombs to get that to come to a end. Our latest war on terror has been one more futile effort in declaring war on someone or something.. Chronic pain pts are either casualties or prisoners of the war on drugs… in fact .. because of the Geneva convention.. prisoners of other wars are treated much better than these poor souls in our society… and the latter is our own citizens.