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.

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.

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  • Most insurances are no longer covering pain meds beyond Neurontin .. Gabapentin. Opioid Prescribing and Tapering: Don’t Raise the Bridge; Lower the River https://www.practicalpainmanagement.com/resources/news-and-research/opioid-prescribing-tapering-don-t-raise-bridge-lower-river?fbclid=IwAR1P5U0c3NbDgcBwk8LVZJmKV8BbWMaSo7sf5T9uVHYriqRy7K1BnKaIBk0

    Gee, Pain Pills Are Not Killers. And the Sun Rises in the East. Who Knew? | American Council on Science and Health https://www.acsh.org/news/2019/10/21/gee-pain-pills-are-not-killers-and-sun-rises-east-who-knew-14349?fbclid=IwAR0Neu9Jb3TTxPCmAgs6dmJjuyf_ciU_n0Z2Cw23EkTk-FXZlgOJB0VcUE0

    MRI last Thursday on Right Dominate arm shows Tendonitist and a large thick tear. Rotator Cuff. There is no way to go through that surgery with out proper pain medication. As a Stage 3 Kidney and GI no OTC MEDS are a option.

  • I’m in my 60’s and have been prescribed various pain medications and eventually opioids for over 30 years. For the past 6 years I’ve been on morphine as it is the only medication that makes my chronic pain bearable. I’ve been on the same dosage for over six years. Diabetes, Heart disease and associated issues with my kidney failure and all rule out any other types of intervention. Taking away my pain medication would make my life unbearable.

  • Leicia,

    Why do doctors, government, and other agencies continue to Call the SUBSET OF INTRACTABLE PAIN THAT IS ONLY TREATABLE WITH NARCOTIC PAIN MEDS by the same name CHRONIC PAIN, which has other treatments and short term NARCOTIC PAIN MEDS THE SAME as Illicit Street OPIOIDS drugs? Chronic pain is NOT a LIFE TIME PAIN AT LEVEL 10. THAT IS INTRACTABLE PAIN THAT LAST 365 DAYS A YEAR FOR LIFE.

    https://medium.com/the-compendia-project/unscientific-guidelines-are-being-peddled-as-evidence-based-medicine-97ce32aeb830

  • Well written and supported article. Perhaps particularly important are the insights offered by trained medical professionals. With a network of medical professionals, healthcare writers and knowledgeable patients, I am working to force unconditional recall of the 2016 CDC guidelines on prescription of opioids, on grounds of deep harms to patients from cherry-picked science, faulty methodology, and unsupported assumptions concerning relationships between prescribing, addiction, and overdose mortality. As I have noted elsewhere on STAT, there simply is no such relationship. And 20 years of CDC published data prove it.

    I may be going out on a limb here, but I believe there is extensive medical evidence demonstrating that mandated or forced tapers of opioid medications are NEVER justified in patients who are otherwise medically stable and whose pain and quality of life have improved under opioid therapy.

    See “Stop Persecuting Doctors for Legitimately Prescribing Opioids for Chronic Pain”

    https://www.statnews.com/2019/06/28/stop-persecuting-doctors-legitimately-prescribing-opioids-chronic-pain/

  • I am a PhD clinical psychologist, a specialist in chronic pain management. Research indicates 97% of chronic pain patients never misuse their opioids. The so called opioid crisis is based on research with illegal drug addicts. Therefore these are totally different groups. Chronic pain patients can stroke or die without their opoids. Which are used with multimodal treatments. People who make policies about opioids should learn interpret research correctly.

    • You are 100% correct. I am in contact with a malpractice attorney not just about the horrible experience of being taken off my meds but complete medical abandonment, doctor profiling, wrong tests ordered and concerning results that were never shared with me or paid attention to, I had to read the results myself and say “wait, that’s a dangerous thing how could this be ignored?” I finally got a pain apt but it is with a clinic an hour one way that has no doctors…only nurse practitioners who have never heard of Ehlers Danlos. My only option was Belbuca (buprenorphine) which I tried when it was new as Subutex 20 yrs ago and it did not work for me. I cannot find a single pain doctor who accepts my insurance and will prescribe the med I was on for 20 yrs that works. And my pharmacy of a decade said that’s only the 2nd script they have ever seen for Belbuca and why would anyone prescribe that? Apparently the FDA has decided bupranorphine and MMJ are the only appropriate pain options for chronic pain patients, regardless of their conditions. I will never understand what has happened to me and so many other chronic pain patients with real medical conditions.

  • What is happening in my State of CT to chronically ill patients is no less than a tragedy due to the Fed and State overreaction to the CDC letter and guidelines for chronic pain management. I have Ehlers Danlos Syndrome, and have dealt with a lifetime of chronic debilitating conditions and excruciating chronic pain. I have had many, many surgeries, both to repair failing joints as well as internal hemorrhaging, kidney stones, intractable migraines, circulatory, cardiac, bone involvement and more. I am now 48 yrs old and I have literally been medically abandoned as I continue to decline physically and mentally. Last October, my amazing PCP resigned without notice when our hospital network ordered all doctors to stop prescribing pain meds for chronic pain and refer to pain specialists. The doctor taking over took me off my long acting pain med that I had been on for almost 20 years, in a 4 week taper. Minimally, it should have been done over 6 months. My break through pain med for acute pain had already been taken away months before that. I have State insurance and not one pain specialist would accept my insurance locally. It has been a year now and I have yet to be seen by an appropriate pain management doctor. A YEAR. I lost 35 lbs, was taken by ambulance 3 times for withdrawal and dehydration/pain and was in a wheelchair for my daughters National Cheer championships which took her 6 years to qualify for. She also has Ehlers Danlos. I have always and continue to do alternative therapies, acupuncture, warm water therapy, massage, inversion therapy, tens, all natural supplements. I do not drink, do illegal drugs, smoke nor had I ever violated a pain contract. My pain meds were treated exactly like my blood pressure and other meds. I was a fully functioning mother who worked and enjoyed life because my pain meds gave me quality of life. Now I am not functioning. My daughter lives with her father because I can not consistently care for her. My physical and emotional health is just non existent. For the first time in 48 years I had a mental breakdown and suicide attempts. Doctors are quitting left and right because they are being bullied by State and Federal agencies overreacting to guidelines for prescribing and who do not understand Ehlers Danlos and that it should be included on the list for palliative care. Referrals take 3 months to a year or don’t happen at all. This is a travesty. No one cares about the patient who did EVERYTHING right and who actually needs palliative care when alternatives just do not work. There are legit ways to make sure these patients are compliant and my lifetime of medical records prove this in my case, along with my very serious diagnosis. I hope someone reads this comment who can make some changes because patients like me are literally suffering needlessly without quality of life, committing suicide or turning to actual drug dealers to treat their pain. This is unacceptable and unjust. DO NO HARM needs to be taken seriously and looked at and addressed from both sides of the spectrum here.

    • There are states in the US that have legal and medical protections for pain patients. In Alabama for example it is illegal and unethical to not treat a patients pain. Can you sue the MD who took you off your meds ? Certainly what he did was immortal and unethical.

  • Unfortunately, suicide has been the only answer people see. They can not live without pain control. I have felt the same, but I’m still here. If the day comes when I can not handle it anymore, then we will find out.
    Cyndi

  • No, suicide isn’t the answer, don’t give the President or any of the politicians the pleasure of knowing you took your life, they & no one is worth that🙏🙏🙏 I beg you & I will pray for you. Yes, the pain is unbearable & no we should not suffer & God willing those of us with real pain will receive relief 🙏🙏🙏🙏🙏🙏 I think our government has more important issues to be concerned about!

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