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.

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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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  • I’ve been on opioids for over 15 to 20 years due to multiple injuries throughout my 35 yr work life. The past 5 years I’ve been on 60 mg of IR Morphine daily. Finally my pain has been controlled well enough that I have a satisfactory quality of life. Due to health issues such as heart disease, AFIB, diabetes, coumadin therapy as well as several amputations that also resulted in bone infections I’m not a candidate for other therapies such as nsaids, injections, tylenol, etc. An angry doctor changed my dose from 60 mg of morphine daily to 40 mg of hydrocodone daily. Beyond putting me into withdrawals, I also became severely, chronically constipated. He did this because I refused to stop Coumadin therapy so he could do injections. I tried to get help as I’m on a workers compensation claim with the state of Ohio. Ultimately they granted the condition of opioid constipation after two hearings. Although I’ve not yet been able to receive treatment. However they decided after all these years, opioids were not needed for my pain and have stopped paying for them. My only claim allowance is for osteoarthritis and torn miniscus in my left knee. Law says you can only see one pain doctor. Ohio Bureau of Workers Compensation says they are likely treating all of my chronic pain conditions. I’ve never denied this and have always made my doctors aware of that fact. And yes all of my injuries were a direct result of my working life. Currently my pain level in my left knee varies from about a one to a three. The rest of my body due to my back, neck, groin, shoulder injuries as well as the osteoarthritis throughout my body incuding even my hips varies from about a three to oftentimes a six or seven. But I live with that. Yet the Ohio Bureau of Workers Compensation feels justified in refusing to pay for even any part of my medications, even though I feel they should pay for all of it. Since 2003 all of my medications have been charged to my 2003 claim. Even my 2005 and 2009 medications were charged against my 2003 claim. My lawyers have filed two hearings, not really introducing much of anything so I’ve obviously lost. They told me my doctor never submited the documents they requested. Now they say they received something but it wasn’t sufficient. I’ve seen the report my doctor sent them. It seems rather clear to me, so I’m thinking my attorney let me down big time. This isn’t the first time something like this has happened. The mental and emotional stress I’ve been through for the last 15 plus years is beyond explaining. Yet there seems to be no attorney willing to help me!

  • I am facing this change and they have taken from 180 pills of 30ml to 90pills of 60ml to 30ml within 2mos and my body is freaking out so bad I want to end It! I was barely functioning with the 180 pills but now I am looking for other things to control the pain and I can’t stop it! What is wrong with our government as they treat animals with more dignity they I get and if they can’t help with medicine at least they put them to sleep. Pleas, is there anyone that can help turn this around? I tried to talk to my doctor who once was very caring and at least tried to help but now he don’t even make eye contact, throws his hands up, and walks away! I feel like someone who is getting ready for the worst torcher of my life.

    Myrna Arens

    • Hi Myrna.
      I feel your pain.

      First I want to tell you what my “loving caring doctor” did to me.

      I was on 30 @120 per month 4 times a day. My next rx she sat me down and gave me an rx for 10 ml at 3 times a freaking day!! No towering down, nothing and said, your on this until pain management decides what you need. I did freak out, cried, even begging her not to do it this way.

      I even told her that if she’s trying to wean me off this is not the correct way. It fell on deaf ears. For 2 month now going on 3, I am at the pain clinic and they did another mri, and I have an appointment to see a retired specialist surgeon to look over my case and decide what is best.

      So I wait in complete pain, begging for it to be over. I’ve thought about. You know what many times.

      Your friend
      Cyndi

      My dr

  • I have had three surgeries on my lower back and cervical and cannot function without opioids. I have fibromyalgia, spinal stenosis, and severe arthritis that runs from my cervical to my lower lumbar. It is intense chronic pain. It’s not a question of addiction it’s a question of an affliction. My dr told me that she would have to lower my fentanyl patch from 100 mg to nothing while keeping my choice of 30 mg of oxy for the pain. I was rear ended recently and my neck which had not given me any problems became excruciating pain due to the whiplash.

    As of today I have to make my dr understand that this lead to more severe pain. The mri showed the damage in my neck due to arthritis from top to the lower lumbar. I don’t know if she will give me more fentanyl but the oxy alone is not working. The dr is basing her reduction of pain meds due to government and state requirements. There has already been 3 fellow patients who have committed suicide due to lowering their meds. It is sad as these people died wanting to find something to help them with their chronic pain.

    Today my dr prescribed soma just ten to alleviate my muscle spasms. The pharmacist would not fill it because I have addictive drugs on my profile and soma is on the addictive list.

    Now the pharmacist are blocking too? It’s frustrating because all we are looking for is being productive and pain free. Is that so much to ask?

  • I was perfectly normal on my opioids then the government went bonkers and my doctors started treating me like a criminal after 8 years of by the book use. I tried all the antidepressants and all of them had huge side effects. I am now trying Medical Marijuana and it does not work in my pain and makes me very tired and dizzy. I just want my Percocet back and be left alone. I have not lived a normal life in almost two years now since they started messing with my percocet

  • This person is exactly what we are fighting, people attitudes that think that people with Chronic Pain can deal with without Opioids. They do not know that most of us have had every test and tried every medicine possible without Opioids. It was my last choice but gave me a life worth living,to be a Husband & Father again made me think I still had something to give. Love to my wife a father active in his sons life, to go sit in the bleachers at a game for my son to look for me and FIND ME IN THE BLEACHERS WAS WORTH ITS WEIGHT IN GOLD. Don’t tell me Opioids are bad they are just another pill in the morning it just this one helps you be part life. Not just watching it go by.
    (Just like Insulin for a diabetic) They don’t get high and neither does a Chronic Pain Patient. Thank you for your time,
    Sean

  • I am so sorry that your lack of being able to obtain adequate pain control medication is causing you to want to end your life, but I totally understand. As one who has undergone 7 serious back surgeries, I too, have my moments of despair. Politicians need to stop intervening in patient care and scaring doctors into compliance that is detrimental to their care. Doctors and punished by both the government and insurance companies not to do what, in their medical opinion, is best for their patients.

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