Living with Pain: Declining Care for Pain Patients

Living with Pain: Declining Care for Pain Patients

Recently I spoke with a pain management physician in southern California.  He has been in practice a number of years caring for patients suffering from chronic pain.

But that is changing.

“Dr. P.” contacted me after experiencing the fallout from a series of articles in the Los Angeles Times on pain care in southern California. The Times reporters focused on a handful of doctors who cared for very difficult to treat people, some of them addicts, who came to them seeking prescriptions for pain relievers.

bigstock-Doctor-writing-patient-notes-o-16554509These patients had unsuccessfully sought help from other caregivers prior to seeking out the physicians written about in the Times. These doctors took on pain patients with intractable conditions. The Times reporters wrote that these physicians had, in their view, been responsible for too many deaths in their practices. They concluded that those deaths were the result of poor practice and lax patient management.

Dr. P. worries that these often erroneous reports, in combination with regulatory and law enforcement agencies, have created a hostile atmosphere for both pain care providers and their patients. He believes that this atmosphere has become corrosive to treatment for those seeking relief from chronic, often debilitating pain.

Dr. P. says pain care providers in southern California are now often targeted by medical boards, regulatory agencies like the DEA, and other law enforcement agencies when they are deemed to have prescribed too many opioids to patients who later die. He adds that many physicians now refuse to take on these very ill and difficult to manage patients because it could jeopardize their practice or result in criminal prosecution.

Dr. P. introduced me to one of these patients, Lilia Mora, who he was fearful of taking on because of possible regulatory interference and unwanted contact with law enforcement agencies. He couldn’t take the risk of treating her because of these barriers, but he wanted very much for me to tell her story. Dr. P. believes it is emblematic of many patients with pain in California and elsewhere in U.S.

Ms. Mora is a 36-year old single mom with six children ranging from 4 to 20 who, with her children, now live with her parents in southern California.

A few years ago, Mora was diagnosed with a brain tumor. She had been suffering headaches and the loss of motor skills and coordination. Though I didn’t notice it when interviewing her, she said that she also has trouble speaking clearly.

In 2010, Mora underwent surgery to remove the invasive tumor. She told me that 93% of it was surgically removed and the remaining 7% was destroyed by radiation.

Mora has been in remission since then, but she has been in terrible life altering back pain. She has also suffered the loss of use her left hand due to uncontrollable shaking. Needless to say, she is no longer able to work.

“The pain has been so bad I had to quit work and haven’t had a job in a long time. I’ve needed help showering, cleaning, everything,” she told me.

Mora explained that her husband left her because, she believes, he couldn’t live with someone so disabled. Research shows that more than 80 % of the marriages where one of the partners is chronically ill or in chronic pain end in separation or divorce.

Not only did she suffer the rejection of her husband, but now, when in public she believes that “people look at me as being different. I’m no longer like them, just different.”

Mora underwent spinal surgery that left her with much reduced movement of her head, thus increasing her disability. She also suffers from the initial stages of arthritis.

Like so many others in chronic pain, Mora has fallen down the socioeconomic ladder. Her medical care is covered by Medicare, but that limits her treatment options as many providers choose not to deal with Medicare. She receives $1,246 monthly in Social Security disability and pays $100 to $200 monthly on medical bills not otherwise covered.

Mora worked for a time with a pain specialist who offered trigger point injections and ultimately methadone. Using methadone scared her, so she declined his offer. She was referred then to a neurologist, who suggested she try another pain management practice.

In addition to 4 to 6 hydrocodone pills a day, Mora takes 12 other medicines. But she still finds caring for her children and helping around her mother’s house too painful, thus increasing her very real sense of emotional isolation.

When I originally spoke to Mora in April, she had contacted five pain practices, all of whom refused to take her on. As of this writing, she is still struggling to find a physician who will treat her pain.

Like so many other patients in California and other states where the war on pain patients is in full bloom, Mora suffers from the widening holes in pain care. This is brought about by the zealous opposition to opioid medicines that leave so many untreated, in horrible pain, suffering from depression, and often looking to the streets for illegal relief.

We can, unfortunately, count on statistics to support the horrible reality that many people with pain will opt for suicide in lieu of unavailable treatment.

Across the country there has been a spike in people turning to heroin, and I imagine research will show that a large portion of the new demand for heroin comes from desperate people living with pain left with no legal options.

These conditions are immoral and scandalous, and should not stand.

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 represent 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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Jason

Its just criminal what the DEA had done to the legitimate chronic sufferers out there. We need to fight back and get our rights back to be treated with dignity & respect in terms of our ailments.

dave

People in pain should unite and create petitions calling on better care. Its clear that medicine continues to fail people in pain and government has done what’s best for medicine instead of people in pain. As I live in the only district in the U.S. where all my city, state and federal legislators have sponsored legislation to improve pain care I know it comes down to walking the walk.

I am one of the lucky ones. It only took me 5 years to find a pain doctor willing to treat me and have been his patient for 7 years. I often have panic attacks when I think of what will become of me if he retires, or moves, or god forbid ends up in jail or having his license taken away because he dares to treat patients with terrible incurable painful conditions. His office informs new patients that the office does not prescribe opiates, that is a change that took place after I had been his patient for years, this change is directly related to the War on Drugs becoming the War on Sick People in pain and the doctors willing to treat them, why bother looking for actual criminals when you can make your quota by further abusing people who for the most part are too ill to fight back. Like others who have posted I have Ehlers Danlos Syndrome – Classic type. It took me 28 painful years before I was even diagnosed, there is no cure for EDS, the only treatment options are managing symptoms as they happen, and one of the hardest symptoms to manage is the unrelenting pain. Every single day we wake up not knowing what our bodies will do. Personally I wake up every morning with at least a dislocated hip and shoulder that I popped out in my sleep. Many EDS patients have trouble metabolizing, that includes food and drugs. We either hyper metabolize them or they sit in our systems doing no good, that makes us terribly difficult to treat. We have acute pain from constant injury and dislocations as well as chronic pain from years of sprains, strains, dislocations and tears. Many of us have co morbid spinal disease, it is all pain all the time with few options for treatment. In our community suicide is a real threat, I talk to people in so much pain unable to find help all over the country. It breaks my heart every single time we lose one, knowing that it could have been prevented had that person been able to find a pain doctor willing to treat them! I am currently a Cannabis patient, it is one of the few things my body can metabolize without me having to worry of accidental overdoses. As someone else mentioned, Cannabis is illegal. I happen to live in a legal state, but that doesn’t change the fact that every time I medicate I am breaking federal laws, I know that if I don’t medicate I will die, or very strongly wish I was dead, anything not to feel that pain, not sleeping, barely eating that is how I lived for years and it never leaves my thoughts. What will become of me if I lose my pain doctor? I am a prisoner of war, the war with my body and the war with finding adequate medical care. Isn’t it bad enough I have to… Read more »

Michelle

We are all complaining to each other, but what we need to do is contact the lawmakers and sign petitions to the DEA. Also express your despair to your doctor. If you feel suicidal from pain, tell them! Maybe someone with a heart will finally stand up to the DEA.

Viki B

I totally hear where you all are coming from. I have fibromyalgia and deteriorated discs in my spine. Every time I have to find a new Dr. because of insurance changes, the first words out of their mouths is they won’t prescribe pain killers. Even the ER will do that to you, I tell not to bother prescribing me tylonol since what I take regularly is stronger. They make you feel like a street junky. I go to the only place in town that is for pain management. I have been going to them for about 7 years. Every time I go I have to have a drug test to make certain that I am taking my meds as prescribed. And thanks to the newest laws I have to drive all the way across town every month to get my prescription since they aren’t allowed to call it in to the pharmacy any more. I really do not understand the logic behind this.

jonquil

Jeannette, I have EDS and I can just imagine what your daughter went through. Like some people with EDS I am genetically immune to the effects of opiates. They don’t work. It’s hard to get a pain specialist or any doctor that knows how to deal with that. Pot works – but it’s illegal. The system is just messed up.

Brenda

I refused to take any prescription pain killers because I was too afraid it would mask my symptoms and that doctors would just dismiss me thinking I only wanted drugs for the 3 years of endless doctor appointments and tests that it took before I was finally diagnosed with Hypermobility Ehlers-Danlos Syndrome. I won’t even get into how badly I was treated by some doctors during that time frame (and since). I figured that finally with my diagnosis I could get the medical help I needed but it didn’t end up working out like that. The genetics clinic would send me to other departments that specialized in some of the different medical problems a person can have with EDS and about all I got out of it was their egotistically ignorant and inaccurate “knowledge” about EDS. When you have no faith in the doctor’s medical opinions on your condition because you know they don’t know their arse from a hole in the ground when it comes to EDS you’d have to take a pretty huge leap of faith to follow any of their medical advice which I was unable to bring myself to do. In the years since then I am still surviving on Ibuprofen only although I now get that in a prescription rather than over the counter so insurance will cover it. My life mainly consists of moving from my bed to computer chair and to the bathroom when required. My pain reduction program consists of not only the large doses of Ibuprofen I have to take to get barely any relief at all but also moving as little as possible. The negative experiences I’ve had with the medical profession starting in the 3 years leading up to my final diagnosis and since has left me too afraid (even though I realize that fear is a bit irrational I can’t seem to overcome it) of even asking for the help I know I need. I can’t stand for more than 5 minutes without the pain becoming so intense that my whole body shakes violently until I can sit back down. I’m not even sure I’d be able to tolerate the pain long enough to even be able to get in to see a doctor now which is why I haven’t been to one in over a year. They just call in the prescriptions for the Ibuprofen without needing to see me. I wish I had even one doctor I felt like I could talk to about my pain but I don’t. I wish we had some kind of National Database that doctors and pharmacists could use to easily track when and what types of medications a person has already been prescribed and is currently taking from all sources so the addicts out there doctor shopping can be more easily identified and separated from those of us that aren’t doing that and really do need help.

These people would prefer to find resolutions to their pain and see an end to their pain. The doctors that can do something about the pain follow too many “protocols” instead of actually thinking and looking at the symptoms of the patient. I know I was classified as a “doctor shopper” during my 7 years of debilitating back pain, but that was because I wanted answers and an end to my pain. I finally got answers and an end to my pain last year. I had surgery that other doctors said I didn’t need on an issue that I had been told was a “normal variant” . . . I am now pain free and so happy to not need a pain management doctor or pain medication. Let the doctors do their jobs, encourage the doctors to look beyond the obvious (or in my case to look at the obvious), and stop making those in chronic pain feel like scum!

Ryan Lankford

The DEA, FDA and law enforcement’s War on Sick People has nothing to do with preventing people from getting addicted and/or dying. It’s all about justifying their multi-billion dollar budgets and keeping their jobs. The DEA has failed to keep cocaine, heroin, LSD, ketamine and a slew of other street drugs out of the US, and therefore out of the hands of users. So, rather than admit that they’re complete failures, they go after soft targets: sick people and the doctors that care for them. I mean, these people are REALLY easy targets, because everything is documented. Scripts are in duplicate and sometimes triplicate, the agents NEVER have to try to find the doctors because they aren’t in hiding, and by reading a state’s PMP records they know exactly which patients have pills and which ones don’t.

Government doesn’t care who lives or dies, period. None of this is for “the good of the public” or to stem an “epidemic.” It’s all about keeping the money flowing to private prisons, and keeping LE agents, judges, substance abuse counselors, prison guards and the slew of contractors who equip this phony “War on Sick People” employed.

Rebecca Gavin

Denese, I am really sorry to hear about what you go through. Only people with chronic pain truly understand what it is like. I, like you, haven’t had problems with addiction and/or withdrawal. I also don’t feel any euphoria when I take them (which could be a good or a bad thing…probably a good thing, for me). I do think opiate addiction and abuse is real, and more serious than marijuana use. But it’s still a relatively small percentage of pain patients who end up in trouble. Even though that amounts to enough people to alarm professionals in both medicine and government, it is still not nearly as widespread as it is made out to be. Very unfair, even inhumane, that we have to suffer because of the stupidity of the few.

Jon

I too had a spinal injury at work. The surgery and ESI’s left me with chemically induced meningitis as well as the degenerating Adhesive Arachnoiditis, Cauda Equina Syndrome, Mid level thoracic spondylosis. Death was the only thing that did not go wrong with my surgery and subsequent treatment. Adhesive Arachnoiditis is the most painful- non cancerous disease that we know about.

These facts being proven my workers comp fails to cover opioids after 2 years. Because of the Workers comp I can not get any other insurance. So I have to pay over 350 dollars a month JUST ON PAIN CONTROL. This is money I don’t have. Eventually I will have to make a decision to die- or continue to live in excrutiating intractable pain.

I know I am not alone.
Jon

Jeannette

wow. my daughter had EDS and had surgery for a spiral knee fracture. she works full time and is raising 3 babies on her own. She received a prescription of 30 pain pills over 6 months ago, she called her doctor to ask for something for pain and was told that since Tennessee has such an addiction problem , she couldn’t have pain meds. with the last prescription being over 6 months ago seems it would be ovious she is not abusing meds. If she were an addict she could go in and get whatever she wants . grrr

denese

i too fall into the same catagory as mora and sooo many others … untill 6 years ago i was a healthy .. active person .. then i was diagnosed with 1b1 cervical cancer .. idk what happened in surgery but i came out of surgery with bulging and herniated disks .. my legs were numb and my bowels and bladder no longer worked propery .. in 1 day i went from being a strong ,sturdy able to walk around with 50 lbs. all day farm girl , to being disabled then we had the radiation and chemo damage to the damaged disks .. i’ve not lived a single day without horrible pain ever sence !! there is not a dr. anywhere to help .. nerve blocks did even more damage and made things much worse !! i have found myself with -0- trust in the medical feild and in serch of alturnatives such as accupucture ,herbs ,and when i can find even opiates from [the street ] .. i saw doc for a sprained ankle ,all i wanted was an exray to make sure and was treated like all i was after was druggs !!! even when i could get opiate pain relief i would take only what was absolutly nessasary [ i really don’t like the feeling of haveing to take ]and never delt w/this withdrawl that the dr.’s and dea want to hype .. yea it’s all hype like when in the 1950’s the propaganda movie reefer madness .. i really wish i wouldn’t had fought cancer because i really don’t want to live in pain all the time — sometimes death is better !!