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As the nation begins responding to the epidemic of overdoses and deaths caused by opioids, some people with chronic pain who have relied on these powerful painkillers for years are finding them harder to get. A survey conducted by the Boston Globe and Inspire, a health care social network of 200 online support groups with 800,000 members, found that nearly two-thirds of respondents reported that getting prescribed opioid medication had become more difficult in the past year.

STAT asked three Inspire members with Ehlers-Danlos syndrome — a painful condition that affects the connective tissues that support the skin, bones, blood vessels, and other organs and tissues — to talk about their experiences with opioids.

Dianne Bourque: Pain control is a problem in rural areas
Michael Bihovsky: Opioids give me quality of life
Alison Moore: People who responsibly use opioids for chronic pain aren’t addicts

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Dianne Bourque: I lived with chronic pain for years. I was able to make it through the day because my work as a surgical nurse kept me distracted. When not truly busy, though, the pain was impossible to ignore. By the time I got home to my family, I was spent. Nights were hard, as sleep was challenging. A colleague finally convinced me to see a pain management specialist. That visit changed my life. I don’t think I would still be working — or maybe even alive — if I hadn’t met Dr. Shah.

He has worked with me to find various ways to keep my pain under control. I have had spinal cord surgery, employ mind-body approaches, and use opioids. I take the absolute smallest dose of pain medication possible. I am very cautious with my meds because I don’t want my judgement to be impaired. Opioids have that potential, but so does pain.

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In my work surveying rural health clinics for accreditation, I have seen how difficult it is for people living away from big cities to control their chronic pain. Some rural health clinics are staffed by nurse practitioners and physician assistants. They provide safe, quality health care and are often the only health care providers available to entire communities. Depending on their state’s regulations, some nonphysician providers may encounter obstacles in their ability to effectively treat patients with complex conditions. Although rare, some providers admit they don’t feel comfortable treating chronic pain. I’ve actually seen signs in clinics stating “This clinic does not prescribe opioids” or “We don’t treat chronic pain.”

If you are elderly and have crippling arthritis pain, or have a chronic pain condition like Ehlers-Danlos syndrome, as I do, what happens when you don’t have access to humane health care? Although I appreciate the need to tighten up the prescribing of opioids, I worry that medical legislation could make life more difficult for people living with chronic pain, especially rural Americans.

Some experts have proposed that only pain management specialists be allowed to prescribe opioids for chronic pain.  Although inconvenient, this isn’t a hardship for me because I live in a major metropolitan area. But for rural Americans, the closest pain specialist may be many miles away. Since doctors can now prescribe only a 30-day supply of opioids, that means making the trip once a month. Many specialists also require mandatory urine testing, which only adds to the financial hardship of treatment.

The addiction crisis is terrifying, and many people don’t comprehend appropriate opioid use. When I first started taking pain medication, I remember a family member saying, “Dianne, you’re going to become an addict!”

We need to help people understand that taking pain medicine to maximize one’s ability to be productive and to sustain enriching relationships is very different than the disease of addiction, which limits one’s ability to contribute to society and maintain healthy habits.

Getting different people with different perspectives to the table is the first step in solving this crisis.  At least one of the seats should be occupied by someone promoting the conversation about rural health care.

Dianne Bourque, RN, is a health care surveyor for The Compliance Team.

Michael Bihovsky: I’ve begun to worry about changes in the way opioid painkillers are prescribed.

I have Ehlers-Danlos syndrome, a connective tissue disorder. It leads to frequent joint dislocations, ligament and tendon tears, and muscle spasms that cause intense acute and chronic pain. My daily pain from it is compounded by whiplash injuries I got not long ago from being rear-ended by an SUV.

Since my symptoms began 13 years ago, I’ve tried every form of pain management I could access — NSAIDS, nonopioid analgesics, neurologic medications, acupuncture, laser therapy, physical therapy, prolotherapy, massage, and trigger-point injections. Most of these have been unhelpful; others provide temporary relief, often at great expense. At the end of the day, when my body is fully depleted of its resources and in the most pain, a single dose of Percocet is the only tool that silences the pain enough for me to fall asleep.

I honestly don’t know what I’d do if Percocet became unavailable to me, and the very thought scares me. I’ve been taking it for five years. To avoid any chance of addiction, I only take it at night and have stayed on a consistently low dose. My doctors, who are not cavalier with prescriptions, give me this medication because I have earned their trust. And yet, with mounting government and public pressure, my doctors’ hands are becoming increasingly tied. They apologetically explain to me why they are required to make the medication even harder for me to get, against their own medical judgment. If the day ever comes when they aren’t allowed to prescribe Percocet to me at all, it may well be the end of the minimal quality of life I fight so hard to achieve.

We have a genuine and devastating epidemic of opiate abuse in this country, and it is of critical importance that this problem be addressed. But we must do so in a way that doesn’t cut off an effective (and often the only) treatment for the chronically ill, many of whom are able to function in this world at all only because of the small respite that responsible opiate use provides.

Michael Bihovsky (@MichaelBihovsky) is an actor, composer, playwright, and activist for often-invisible chronic diseases.

Alison Moore: I’ve been living with pain since I was a child. It has increased and has been completely debilitating since 2012. When I was younger, I had severe leg pain in both legs. Doctors shrugged it off as “growing pains.” They were wrong. I’ve since been diagnosed with Ehlers-Danlos syndrome, fibromyalgia, and other issues that affect my health. I worked as a nurse for 19 years until pain and numbness in my legs made it impossible to safely care for patients.

I relied on ibuprofen for a long time. Unfortunately, it stopped working and also led to worsening gastrointestinal difficulties. I currently take Lortab, which is a combination of acetaminophen and hydrocodone. I’d rather not take this medication, or any medication for that matter, but it is the only one that controls my pain adequately enough to allow me to function on a daily basis. I take care of my 78-year-old mother, who has dementia, and my 13-year-old daughter. I take the smallest dose possible to enable me to remain as clear-headed as possible to do what I need to do each day.

Government agencies are trying to get doctors to cut back on prescribing opioids. I understand that they need to do something about the epidemic of overdoses. However, labeling everyone as addicts, including those who responsibly take opioids for chronic pain, is not the answer. If the proposed changes take effect, they would force physicians to neglect their patients. Moreover, legitimate pain patients, like myself, would be left in agony on a daily basis.

The government needs, instead, to allow doctors to assess patients’ pain individually. Lawmakers and “overseers” need to let doctors sift out legitimate pain patients who maintain their appointments and comply with care and prescribing instructions from those who do not, as well as those who obtain opioids illegally.

I’m not sure what I would do if my doctor felt he had to stop prescribing opioids, or moved away. If the new physician decided I didn’t “qualify” for an opioid, I would not be able to get out of bed, much less attend to anyone or anything else. I imagine I would be forced to do whatever it takes to lessen my pain in order to function. Even with the minimal opioids I take, I still have pain all the time, 24 hours a day; without opioids, life would be torture.

When you have chronic pain, your mind, your body, your everything is fixated on the pain, even though you don’t want it to be. You can’t sleep, shower, fix food, or walk across a room. I have to be able to do all of those things and more to care for myself and for the two people who depend on me every day.

Alison Moore, RN, lives in Spring Grove, Pennsylvania.

  • Do you know if there is a list of congress people or senators who understand and/or take the side of chronically ill people who need opioids and are having these difficulties talked about in your article? How can we contact them? Thank you for the great article. Please keep it going.

  • I too suffer from multiple debilitating incurable conditions. Have tried all the alternative therapies MY BODY, coukd take and has left me thousands of dollars in debt. I have tried every non opiod, OTC AND NSAID out there, NOTHING worked. Opiod therapy was my LAST RESORT and I was given QUALITY OF LIFE once mu dr and I found what worked for me. Eight years i was on the SAME STABLE DOSE. up until last March. My dr lowered my meds to ineffective doses and took so me away. .i am left in agony. I have ZERO QUALITY OF LIFE. The war on legitimate pain pts is killing innocent law abiding chronically ill citizens. The pendulum has swung way to far. WE ARE NOT ADDICTS WE ARE CHRONICALLY ILL PEOPLE AND DESERVE TO BE TREATED WITH DIGNITY AND RESPECT AND WE HAVE THE RIGHT TO HAVE OUR PAIN TREATED WITH MEDICATION THAT WORKS TO EAZE OUR PAIN! We need to fight back, soon opiods will totally be taken off the shelves unless we are dying. Our government wants us to suffer until death. This is GENOCIDE! Every day more chronic pain pts are forced to the streets for relief or SUICIDE, suicide should never be an option, and turning to the streets will turn us into criminals, just what the government wants. I urge you all to write your state congressmen/women, tell them the TORTURE they are inflicting onto you by DENYING you your LIFE SAVING PAIN MEDICATION! There is NO opiod epidemic! Anything can seem possible when you have corrupt agencies like the CDC, DEA, FDA AND PROP along with the government leading the way. THE CDC used FALSIFIED statistics made to fit the governments addiction driven agenda! The CDC admits to MISCLASSIFYING MANY heroin deaths as prescription pill deaths, suicides from legitimate pain pts who took their life to escape the pain were labeled as prescription pill deaths, they doubled many deaths. This witchhunt they all have going on needs to end now. They have the blood of many on their hands. How the DEA, CDC and the government are getting away with inflicting harm, pain and suffering onto legitimate pain pts, I will never understand. FORCING US TO SUFFER UNTIL WE DIE! I say these corrupt lawmakers should have to know what never ending severe pain is like, Surely someone can invent a full body suit that is capable of inflicting painful sensations, all over body throbbing, piercing, stabbing pain, a sensation that your back feels like its being crushed by a steam truck roller, electric type shocks shoot down the legs. a zillion burning pins and needles covering their feet, their hips must feel like they are being scraped along the concrete, chipping away at the bones. Thats just some of what I feel. Add what it does to a person mentally, how untreated, under medicated severe pain affects you mentally, it rips families apart, it makes one feel like a failure when you can no longer work due to severe pain, can no longer provide for your family, you start becoming isolated, left alone to fight for your rights to medicine. CPP’s don’t want to take pain medication, in fact nearly all CPP’s will tell you they hate having to take pills, but if we want any QUALITY OF LIFE, chances are opiods are our last hope. Many of us have been on them for years, decades even, then in steps the corrupt government and their sidekicks the DEA, CDC, FDA and PROP, dictating who is allowed some relief and who will be forced to suffer. HOW MANY MORE SUICIDES WILL IT TAKE!?!? GOVERNMENT AND DEA NEED TO GET THE HELL OUT IF OUR HEALTHCARE! LET OUR DRS TREAT OUR PAIN!!

  • Mr. Skerrett,
    As a chronic pain sufferer I appreciate the intent of your article. My own issues with pain come from my daily battles with multiple sclerosis symptoms as well as many major injuries to joints and bones that have occurred over the course of a career in the military and law enforcement.
    In the past 3 years I have had to find a new doctor four times. The laws are becoming so restrictive here in Florida that I have actually seen signs on offices saying that they will not prescribe opioids. Then there is the issue with pharmacies deciding what and when they will dispense anything, even over riding a valid doctors prescription.
    I have contacted my elected representatives, I have contacted ranking counsel members, the directors of the CDC, the DEA, and even the President.
    All I manage to get back are form letters with empty words and no real care or concern for the patients.
    It is now a political issue and god knows politicians don’t want to look bad to the voters.
    Unfortunately people like me will be run over and cast aside in their quest for political standing.
    Then again I can always become a raging alcoholic to try and numb the pain, that for some reason is legal.
    Maybe my lobby just isn’t strong or rich enough.
    Thank you for your efforts, but eventually, probably sooner rather than later, I and patients like me will be making hard choices for our lives without the ability to receive the medicines that work for us.

  • I am new to Connective Tissue disease, suspected Ehlers Danlos. The constant subluxations and dislocations can really tax you physically and emotionally. Chronic pain can be compared to an abusive mate. It’s controlling, demands attention 24/7 and has little regard for your feelings and health.
    I try not to take opiates telling myself it’s better to go without now rather than becoming dependent on them and then have them taken away.

    I’m already dealing with so many changes in my life with this new diagnosis that affects every system of my body that to add the stress of not having pain relief is beyond daunting.

    It is a stress that should not be. Pain Relief should be a basic human right. Don’t punish us because a few patients and doctors abuse the system.

  • I know of the pain that you speak of. My family and I have a variety of neurophathy conditions,CMT,MS,Fybromyalgia just to name a few. My mom has gone all these years I’m pain because she didn’t want or understand pain medication. She is now 71 years of age and decided that she would ask for pain medication. She went to our family doctor an explained that the pain from the metal plates & screws in her ankle is to the point t that she needs help. The doctor told her that he would not prescribe any pain medication for her because of the government crack down on the abuse of opiates. I have e to ask, what does that have to do with my elderly mother??? Trust me, when I see this do for at my next & last appointment, I will let him know how he failed our family and that he should be ashamed of his self. I could go on & on about how people in pain all over are suffering without any help but who would listen, then who would help ??? The system is failing us all…..

  • Have you read the recent pain contracts required by the DEA of all LTO patients? They are horribly written, riddled with contradictions and typos, and they strip the patient of all rights. It’s assumed you’re a criminal just for claiming to be in chronic pain.

  • I chose not to take opioid meds. Now people are telling me I don’t have fibro?

  • I no longer have a Doctor. The one I was seeing wanted me on fental patches,my husband said I should try it. Well ok after 4 pain patches that didn’t cove the 3 days with pain relief. I thought how I don’t want to become addicted to any medication like this.
    So I called the dr. June 27 as he asked me to so I can get off these patches and go back on my norco at 3 a day. But… this doctor have never called me back to date. Today is July 15th .
    I am in so much pain I am having anxiety anger with the horrible pain. No one cares. I have NO ONE TO HELP ME.
    What can I do…end my life when ALL I want is to be out of pain???

    • Diane,
      I can completely understand why you wouldn’t want to be on such a strong medication as Fentanyl, when it didn’t even control your pain, and you could take a low dose of Norco. How could they not prescribe it to you? Don’t give up looking for a pain management specialist. It’s a very difficult fight right now, and takes everything we have, but we have to keep fighting to get treatment. Our lives are worth it. Keep going!

  • Thank you for being one of the few reporting on opioids and their value to chronic pain patients. May I suggest you follow this story with one that interviews some of the many people with chronic pain who have lost their medication since the CDC guidelines and other regulations have gone into effect? Try getting in touch with groups like Patients Not Addicts or a group I help administer on Facebook, Chronic Pain Voices. We hear from desperate people who have lost their medications all the time, and it is heartbreaking.

  • I totally agree with the people in this article. Legitimately, chronically ill patients are in need of opioids in order to maintain their daily life activities. They are not addicts and should NOT be treated as such. I recently underwent 2 major back surgeries and have Mixed Connective Tissue Disease (MCTD). I needed my opioids. Thankfully I’m now off them and back to my reg DMARDS and enbrel. But at night, after a PT session I do need an occasional oxy. When I was discharged from the hospital after surgery of 2 fusions and stenosis relief of 3 other vertebrae, I was given 3 days worth of oxy by the hospitalist who said he couldn’t give me anymore. Really!!! Thankfully my neurosurgeon wrote me a script for more.

    I fear there will be many people who are not able to obtain their needed pain medication will end up committing suicide!! It is so unfair to punish those in true need because others abuse opioids.

    I do know the DEA and insurance companies carefully monitor docs prescribing opioids. Doctors need to stand up for their patients. They need to carefully document their patients needs and follow guidelines for monitoring, i.e., urine drug screening.

    The pendulum has swung from docs prescribing too many opioids to not prescribing enough to people who legitimately need them.

    • Such a much-needed article, but I fear we are crying in the wind. Over the last two years I have had Lyme Disease (confirmed diagnosis) which has accelerated my hip arthritis/joint pain. I too have had cortisone injections, and have tried many types of pain control. Very appreciative to my doctor who gives me Tramadol, which I take in the most minuscule dose, along with NSAIDS. It is extremely unfortunate that people like are the babies being thrown out with the bathwater in the fight against opiod abuse. I also think that the storyline that virtually every abuser began with a legitimate pain prescription is a convenient but incorrect red herring, and allows abusers to evade responsibility and pin blame squarely on doctors. This narrative contributes to the difficulty of legitimate pain patients like myself and those those described in the article receiving much-needed medication. People like us want to live our lives in a way that allows us to function in the highest level possible–everyone here describes taking the lowest dose of pain meds they can so they can work without impairment. We are not addicts, we are people that need medication assistance to live as fully as possible.

    • Ms. Long, I must take issue with your support of urine tests for CPPs. Urine tests are used as a tool to check for possible diversion of a patient’s pain meds. If the opioid level is too low or non-existent in a sample – maybe because the patient had a good month and didn’t need so much medication – the doctor will automatically deny the patient pain medication altogether. Why? Because the patient must have sold or given away (diverted) their medication! It doesn’t matter what the patient says, it matters what the test says. Urine testing under these conditions is degrading. The requirement tells CPPs that they (I would say “we” but have not had to undo such testing) are criminals until proven otherwise.

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