Discrimination Against Chronic Pain Sufferers…

Discrimination Against Chronic Pain Sufferers…

In September 2016 I posted about Chronic Pain & Pills… and the difficulty a family member was having. He is 73 and retired after 47 years of steady and often physically challenging employment. He was a tractor-trailer driver for 40 of his 47 years in the workforce so essentially sat in the cab of the truck for over 10 hours a day. He began feeling ill in 1991 but typical for him wouldn’t take off work to see a doctor until I finally insisted. His PCP at the time diagnosed him with fatigue. Hmmmm. As a nurse,  the diagnosis of fatigue didn’t sit well with me so once again I insisted he seeks a second opinion. This doctor ordered basic blood work and when it came back within normal limits, he also diagnosed him with fatigue. Again my professional experience kicked in and I instinctively felt they were both wrong; it was more than fatigue but I didn’t know what or whom to turn to.

One night while working at the hospital I saw a pamphlet about Lyme Disease which was still somewhat new in 1992. I remember looking at it and with each paragraph, my mouth fell open a bit more. It specifically described the symptoms and the discomfort he’d been experiencing since the previous summer. More telling, however, was the photograph of the classic red rash; a red ring surrounding a clear area and a red center. I remembered he’d been bitten by a tick the summer of 1991 and developed an identical rash. Small at first, it enlarged in size over days/weeks until it was approximately 6” in diameter. It lasted for at least a month and always felt warm. I realized that I might have found the answer to his lingering illness so made an appointment with an ID (infectious disease) specialist in  Philadelphia. After a comprehensive examination and specific blood tests, she diagnosed him with Stage 3 ( late disseminated) Lyme disease. He was hospitalized in ICU and after several days transferred to a medical floor for nearly a week. He had a port implanted in his chest prior to discharge and once home, received IV antibiotics for several weeks through it.  Finally, after what seemed like an eternity he began to feel better. Unfortunately, Stage 3 Lyme Disease can cause long-term joint inflammation (Lyme arthritis) usually in the knees along with a host of other complications, many which continue to resurface years later. He developed severe arthritis in his knees which the ID specialist thought was probably made worse by his profession ~ driving for long hours all week. He also developed arthritis in his hands, specifically in his fingers. It hurt his hands to try to grip things and he often dropped them. As a  driver, he often had to unload freight. I  remember he developed callouses on his inner wrists. When I asked what caused them, he said he was unable to unload the freight by hand so picked the boxes up using his wrists. Yet not once did he complain.  His dedication and strong work ethic were beyond reproach.

Shortly after moving to Maine he started seeing a rheumatologist for his arthritis. He began receiving injections to his knees which initially worked very well but as the years passed the effect of the injections didn’t last as long. He was still working so his knees were bent every day and he was frequently unloading freight by his wrists. His rheumatologist prescribed Vicodin which he only took on the weekend and even then, only if he couldn’t stand the pain. When he retired at age 66, he was finally able to live the kind of life most of us take for granted. He had the freedom to watch the news on television, walk the dog, drive to the store, sleep in a regular bed, make toast and a cup of tea in the kitchen. All those little everyday things that he wasn’t able to do for 40 years while living in a truck. Yet even with these lifestyle changes, his knees and hands continued to hurt and were steadily worsening. He had the Vicodin prescriptions filled every month even if he had leftovers from the previous month because he didn’t want the doctor to think he didn’t need them. They were prescribed four times daily as needed but rarely did he take more than one or two a day and some days none at all. 

He went to the rheumatologist for his routine appointment in March 2016 and upon arrival was told they needed a urine sample.  When leaving he was given a paper saying that in the future he had to bring his Vicodin bottle with him. That was new but given all drug-related issues in society not surprising. In the beginning of April,  the doctor’s office called to say the test didn’t indicate enough Vicodin in his system so it would no longer be prescribed for him. Dumbfounded doesn’t even come close to describing my reaction. He was glad he had leftover pills because when the Vicodin was stopped nothing else was prescribed. He didn’t see the rheumatologist until August so he would have been in horrible pain for five months. During the August visit, the doctor said that he wasn’t allowed to prescribe Vicodin based on the urine test, that it wasn’t his policy but rather that of the hospital whose umbrella he was under. He added that the hospital was working with the state to decrease narcotic prescriptions. He prescribed a different medication which is completely ineffective against the severity of his pain.

It pains me to watch him struggle to get up from a chair or limp when he walks. My heart aches as I see him wince in pain when trying to open a jar. Now is the time he should be enjoying his life but because of chronic pain, he is doing anything but. He wants very much to go to Tennessee this summer to visit his family but is worried that his arthritis will affect him; that he won’t be able to participate in simple activities with his grandchildren due to his pain level. Every week I read of more drug-related arrests and indictments in our small rural community. Many are for trafficking which simply amazes me. Where do they get the drugs? If a 73-year-old man with arthritis so severe and painful that it’s adversely affecting his life can’t get a prescription, where are these people getting them? I asked his PCP about it but he said he doesn’t prescribe for a patient who’s been “cut off” by another provider.

As to the medical center’s across the board policy, I have to wonder if it ever crossed their minds that not every person with chronic pain is a potential trafficker? That not every senior citizen is supplementing their income by selling some of their pain pills? Why do doctors automatically assume that everyone who complains of severe, chronic pain has nefarious motives? What gives them the right to play God with a person’s health and welfare? A person who has been their patient for 15 years? Yet because of a prejudicial policy, he suffers each and every day, his quality of life so impaired that he is often unable to enjoy his days.

The same thing applies to the state. In April 2016 over two-thirds of the Maine legislature voted to override two harm reduction bills vetoed by Governor Paul LePage ~ LD1552, a bill that would provide public funding for syringe exchange and expand syringe access, and LD 1547, legislation to allow access to the life-saving overdose antidote Narcan (naloxone) without a prescription, something Governor  LePage vehemently objected to. During a town meeting in Damariscotta last year LePage said:

“There comes a point in time where who is responsible for who. You know a shot of Narcan is $70 and the person who gets it doesn’t have to pay it back.”

So a state whose governor publicly implies that a human life is not worth $70 is the same state establishing narcotic prescribing guidelines?

With no doctor to help and pain that is severely impacting his life, my family member has decided to try medical marijuana  because it’s legal in Maine. As I researched cannabis I was surprised because it’s definitely a profitable business. You make an initial appointment with a doctor who is certified by the state to prescribe medical marijuana. Upon completion of the appointment, providing your medical condition is one that qualifies,  you will be issued a Medical Marijuana Card (usually tamper-proof). The first visit ranges from $150 to $300 and the annual recertification is about $50 less. Then there is the cost of the actual cannabis which can be approximately $300 a month.  My family member doesn’t want to smoke so will try a concentrate that he can add to a cup of tea. And of course, insurance doesn’t cover any of the costs whereas a prescription for Vicodin is $10.

So let’s recap. A senior citizen with a long, well-documented history of Lyme Disease and arthritis. Retired after 47 years in the workforce, 40 of them as a tractor-trailer driver. No history of drug or alcohol abuse. He didn’t take Vicodin four times daily because he didn’t want to develop a dependency plus the prescription said: “as needed”. Yet for not taking them when he didn’t need them or was driving, the hospital’s inane and unjust policy is forcing him to turn to an alternative source in an attempt to obtain some degree of pain relief. In doing so, he’ll be spending several hundred dollars a month of his limited retirement income; money that he could spend on enjoying his life instead.

Maine, like every other state, is seeing the tragedy of the nation’s prescription opioid and heroin epidemic but it is also seeing an increase in people with chronic pain, especially as baby boomers age. Chronic pain now affects more than a third of Americans yet as I have discovered, getting help from your physician, no matter how many years you’ve been a patient, is often impossible.

I will never go to that hospital for a procedure because of his experience. And should I develop a condition which causes me chronic pain, I’ll definitely seek help elsewhere because no one should be made to arbitrarily suffer like my family member; to have his treatment altered based on not taking as many pain pills as they think he should but rather, as prescribed. To be judged on the results of a single urine test as opposed to a long documented medical history and 15 years.

What a sad indictment against the medical profession. When did it lose humanity and compassion?

Chronic Pain & Pills…

Chronic Pain & Pills…

Playing devil’s advocate for tonight. I was reading our local online paper and saw that a 30 something couple had been arrested for trafficking in narcotics and numerous individuals were indicted for  drug related offenses. What bothers me is because some individuals CHOOSE to traffic in narcotics, honest people with serious and  chronic pain issues are often denied prescriptions. I have an older family member who was prescribed  Vicodin monthly. He worked hard his entire life as a blue collar worker hence physical labor. Of the 47 years he worked, 40 were as an OTR (over the road) tractor trailer driver. He literally lived all week in his truck and was in a sitting position with knees bent for at least (11) hours a day. I’m sure that when he started driving many years ago, the DOT rules were not regulated as they are today. In 1991 and continuing into early 1992  he was sick for months yet because of his strong work ethic wouldn’t take off. When he finally went to his PCP he was diagnosed with general fatigue but I knew that wasn’t it.  I practically had to force him to go for a second opinion. After an exam and basic blood tests, that physician also said it was fatigue. My nursing instinct however told me it was something more ~ I just didn’t know what or whom to turn to. Then one night at work it hit me. I saw a pamphlet in the hospital about Lyme Disease , a disease the medical community was learning about. As I read the pamphlet I suddenly remembered he has been bitten by a tick the previous summer and had the distinctive red bull’s eye rash. I took him to see an Infectious Disease doctor who, with the help of a specific blood test, diagnosed him with Stage 3, or late disseminated, Lyme disease. This stage can cause long-term joint inflammation (Lyme arthritis) usually in the knees along with a host of other complications, many of which he has experienced years later. In 1996 and again in 2000 he had  episodes of Bell’s Palsy, a possible occurrence of Stage 3 Lyme Disease than can occur years later. Fortunately both times he was treated and it resolved. His severe and often debilitating arthritis however has not been resolved despite injections of cortisone to his knees. Because of its severity he has been treated by a rheumatologist for nearly fifteen years. In addition to the knee injections the rheumatologist prescribed Vicodin. My  family member never used it when he was still driving but now that he’s retired takes it on an infrequent basis. Some days he needs it two or three times while other days only once or not at all. He chooses not to take the Vicodin daily because he doesn’t want to develop a dependence (just because we get older doesn’t necessarily mean we get stupid). Plus at age 73 he is of the generation that simply doesn’t take pills. Instead he opted to take it as needed, using plain Tylenol or homeopathic arnica in between. His specialist of fifteen years is under the umbrella of a Maine hospital. My family member went for his six month checkup a few months ago and learned the practice had implemented blood drug screening tests for anyone on narcotics. When his test came back with less Vicodin in his system (because he didn’t take it every single day), he was cut off completely. Told he was not taking them as often as he should even though the prescription label clearly said “every six hours as needed“.  As needed means just that ~ when you have severe discomfort/pain. It does not mean take it on a schedule. He was questioned by a rather nasty office nurse  as to what he was doing with the Vicodin. Was he selling or sharing? In my professional opinion she crossed a line and when I learned of her interrogative questioning tactics  I went ballistic. Her approach and accusing manner was unacceptable so I called the practice manager to complain. I had to leave a voicemail and ended with a request that the physician call. When one week passed without a return phone call from anyone, I called and again had to leave a voicemail. I gave it another 10 days then sent a certified letter to my family member’s doctor. He finally called us and explained that he is being monitored by the hospital he works for (as were other doctors under that healthcare umbrella who treat pain) and that the blood tests and stopping the Vicodin were the hospital’s rules – not his personal ones. He went on to say that the people who either fake pain to obtain narcotics to sell or those with real pain who supplement their income by selling some of their prescription has made a HUGE impact for doctors like him, a board certified rheumatologist  who specializes in treating chronic pain. It’s a terrible situation for an honest person to be in. They know one can become addicted so don’t “overindulge” and because they choose to stay on the safe side find themselves penalized without ANY prescription pain medication. Finally the rheumatologist prescribed something which is NOT effective for his arthritic pain and only causes constipation so he simply doesn’t it. All because of the people in society who choose to traffic which in my opinion include those with genuine pain who sell part of their prescription. Selling/trading/sharing YOUR prescription medication is illegal any way you look at it, whether it’s a narcotic or some leftover antibiotics from an infected tooth. And because people sell drugs for whatever reason, those with severe pain have to suffer. I keep reading articles blaming the pharmaceutical companies for manufacturing such powerful medications and blaming physicians for prescribing them. My feeling is ~ society NEEDS pain medication for people who live with chronic pain on a daily basis. I am thankful that drugs are manufactured that would help me retain some quality of life should I develop an extremely painful disease. We should not be penalized however because of those who CHOOSE to engage in trafficking. No person with severe, debilitating pain should be denied relief yet they are. Unlike traffickers, chronic pain is not our CHOICE.  

Now I watch my family member suffer in his retirement years, when he should be enjoying himself. Instead, just rising from a chair causes him pain. He can barely do anything with his hands because they are so painful. It hurts me to see a 73 year old man who worked 47 years, 40 of which were spent in the confined cab of a tractor trailer, not be able to enjoy  simple everyday things because of severe pain. He wants to visit family in TN this summer but is concerned about the pain, wondering if he will be able to participate in doing things with them. This is absolutely heartbreaking.

I think that’s why the medical marijuana movement has gained such momentum. Honest people with real pain issues need help and if they can’t get it from their medical provider then what alternative do they have? It’s a very slippery slope. I truly feel for those caught up in it. My family member said he would take medical marijuana which nearly blew my socks off. For him to say that tells me he is in agony. I’ll wait awhile and broach the subject with him again and if he still expresses interest than I’ll have to see how one goes about doing it in Maine.