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s 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 reading the comments as I also have chronic pain , I just wanted to say that we need to stand together and fight for are right to receive are meds! Also ignore people like Lisa who is the very reason why true pain patients are losing the meds that allow us to live! Drug addicts will always find a way to get drugs , and we are not in a opioid epidemic , we are in a fentanyl/ heroin epidemic that has gotten worse since the crackdown ! My thoughts and prayers are with you all who are truly suffering from chronic pain !!!! True pain patients like me and millions of others don’t get a high of are meds , it is not possible and if you do u clearly aren’t in legitimate pain !!!! Gentle hugs my brother and sister warriors , keep hope and faith and NEVER stop fighting!!!!!!

  • And I’d like to add the following questions to all you responded to my opinion…how did people survive before opioids were given out like candy? Did we suffer, hell yeah we did, did it kill us? No. I have suffered through 2 major car wrecks – on head on and one roll over. The left side of my face was shattered, my jaw wired shut, and plates in my forehead. I disks in my lower lumbar region are so messed up and the slightest wrong move will cripple me for weeks. For 15 years my job required me to stand on tile and I honestly don’t know how I managed to do it. Now that I have a job where I sit all day, it’s becoming worse. Walking sitting getting up moving around and driving takes my breath away.. my teeth are all screwed up from when my jaw was broken and I constantally have pain that i can hardly cope. So yes, I do know pain. But it’s amazing the strength we find when we are left with no alternative. It’s not the pain that keeps people needing pills. Its the pills themselves.

  • I have chronic pain been on pain meds about 7 years norco10 main relief from pain but past two months it no longer works I think they changed the medicine formula without our knowledge I cannot get out of pain I also been talking 800 ibpropren which makes me sick it takes edge off I don’t no what to do my doctor won’t listen to me if I could just lay down die get out of pain I would I don’t believe harming myself I’m just sick of hurting just want to quite trying I’m tired if it fighting doctors and pain to much

  • I have been on opiods since 99′. Now they want to cut them out completely. I haven’t had any problems at all since I have been on them. I have arthritis, fibromyalgia, migraines, total replacements in both knees, need a shoulder and hip replacement, have herniated disk, bulging disk, had a staph infection wrapped around my spine, bone spurs, and a doctor tore my sciatic nerve and was told it will never heal! The opiods are the only thing that help me stand or walk. I’m scared to death and won’t know what I’m going to do! It just doesn’t seem fair. My doctor even agrees but her hands are tied! Thank you!

  • I believe the only solution to the problem is too phase the drug out. Only those who already are prescribed these drugs will have them prescribed. Any future patients will no longer have access to prescriptions of these types of drugs. As those who were grandfathered in die, eventually there will be no one left with a prescription. No prescription on the street equals solution to the problem. At least for prescribed over doses / addiction goes.

    • Lisa,
      Please do research on pain and the impact pain has on human beings.
      Pray that you are never impacted by an accident, surgery or disease that leaves you in crippling pain.
      In 2014, I went from living an active, healthy life to severe crippling pain after a botched surgery on my neck. It can happen to anyone!!!

    • I am a nurse, a critical care nurse and 7 years ago my husband and I were in an accident on black ice. I spent 3 1/2 months in the hospital, one month on a ventilator . I had a incomplete spinal cord injury that was so painful even the feel of a sheet caused me such severe pain and total body spasms that I felt like I wanted to die. I will not be the last person that has this severe pain problem and I pray this will never happen to you or your family and have a Dr say I’m sorry only the people grandfathered in can have access to some pain relief with opioids. I have never abused my medication. I have tried acupuncture exercise and anything that would give me quality of life. I hope this message gives you a reason to rethink your way of solving this complex problem. Thank you Laura Roach RN

    • You really don’t understand what you just wrote. If the medical community did what you just suggested the suicide rate would go up tremendously because patients with debilitating , chronic pain would not be able to stand it and would have no choice but suicide. pray you never find out what I am talking about by developing sever chronic pain yourself.

    • I appreciate everyone’s opinions, I really do. I understand my solution is not without its flaws. The fact is, I don’t believe there can ever be a win-win solution. People will suffer and people will continue to lose their lives.
      My mother was prescribed oxy, moriphine, and xanex after she became ill and given a year to live. She ended up living 8 years and as her health slowly deteriorated, her addiction grew. The reason she took her meds was no longer to take away the pain (they stopped doing that long ago) she needed them to keep from becoming physically more sick.
      Aside from her illness that started it all, I knew the situation she was in. I struggled with an addiction for 2 1/2 years and I know all to well what a hell it isand how it is next to impossible to walk away from. The physical sickness was difficult without health problems, I couldn’t imagine being in her situation with a terminal illness. I worried just as much as she did that she would no longer have access to her meds. Her frail little body couldn’t have handled it. I understand there are those who suffer greatly and pills help ease the pain. and I know people are addicted and I know they never intended to be. We trust doctors are not going to harm us but they do. What kind of doctor thinks it’s ok to prescribe oxy, moriphine and xanex all together??
      For those who rely on these pills, I know where they are. I appreciate their concerns and their needs. I know we cannot ask to give it up. I know how much harm it would cause. My heart feels their pain.
      But what about the patient with a short term pain or the teenager who raids the medicine cabinet who becomes addicted? Once the the supply runs out they have exhausted access to it what happens? They turn to the street and now it’s become a lot worse as
      heroine becomes the alternative. Heroin is an opiate and oxy an opiate. Difference is one is regulated the other is not. Who knows what you are getting off the street but chances are it’s a hell of a lot more lethal. Moms and dads and grandparents and kids lives ruined.
      Who can honestly say their lives have been made better by taking pills. Anyone who does is in denial. I rather deal with the pain any day then to ever go back to waking up everyday and the 1st thing in my mind is to pop a pill. Trust me there are weeks when I can’t even get up without excruciating pain. I remind myself pain doesn’t kill but pain killers do.
      It ruins lives, it takes lives. It’s nothing but a legal heroin and it’s not right to think of it as anything other then that.
      We need to put an end to it soon. I know people will suffer and it really sucks. How do we justify allowing the cycle to go unbroken?
      My solution probably does sound foolish but its a start. Let’s stop finding excuses and start bouncing ideas around and come up with a solution.

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