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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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  • Everyday there is more talk out there about getting rid of opioids or reduction of pills.

    This talk seems to me keeps getting worse and worse.

    I wonder how they will react when people in our position start committing suicide? (I dislike that word). I am not trying to bring more drama into this hot topic, but I am very sure we have all thought about suicide.

    Cyndi

  • My name is Tammy and I have much in common with these chronic pain stories I have read. I have been with the same doctor for the past 20 years. I have suffered through 19 surgeries (3 of them were C-sections so the actual total is 22). I have tried the same as everyone else in the prior stories I have read. The opiates I take give me the only quality of life I could possibly hope for at this point. I have never taken more nor have I abused them in any way. I am expected to begin taking less medicine just as the pain is seemingly getting worse. I cannot imagine my future without relief from the horrific bone pain that encompasses my entire spine. Nor can I live with the same horrific muscle spasms that are set off once the bone pain begins. For many years I just wanted to live a “normal” life, take care of my children, my husband, my family, and my home. I admit I may have tried to take better care of them than I have paid attention to myself. I am strong willed but I fear living with the constant pain, if my only source of quality of life is taken away, will cease to be come any kind of quality. I was prescribed these medicines by my doctor – I took them as prescribed. I have lived as both a prisoner and grateful user of these meds as the help in assisting me to tolerate my pain, yet at the same time I feel like a prisoner because without them as I’ve said life will cease to exist for me. I cannot live with this pain. I am looking into alternatives to add to my current pain management routine ( which has become simply taking the medication) but I am finding they are quite costly especially those that do not take my insurance and most do not. I understand the current situation and unfortunate need for people to get high. What I do not understand is why a simple criteria for receiving these pain meds cannot be conceived and put into action. My medical records speak for themselves. I expect I will for as long as o live need the assistance of some form of pain medication. I do not say this because I am defeated it is simply because my body has been broken and injured so entirely decreased mobility and increased pain is just part of my future. I wish I had the answers. I wish it was true that the mind could control the body- as of yet I have found that to not be true. I now live in pain and in fear. Is anyone listening ??

  • After working 40 years as a nurse I have many things wrong with my back & have tried everything including surgery. Most doctors INCLUDING pain clinics in Kansas city will NOT give opiods!! My last choice will be suicide. I am doing all I can but I am only human.

  • I have chronic pain syndrome after a motorcycle accident. Spent 2 months with fixated bars in both sides of my hips. Several other broken bones. Going to pain management doctor who prescribed generic opana. Working well. Now the FDA has banned Endo pharmaceutical company from making it available. This drug has been used for pain relief,since 1948. I am angry because,the medication,, works. I’m under a contract with my Dr. and submit to drug test and count of the tablets. Since when did the FDA dictate what a physician can prescribe my medication??? This should be between my physician and me,, period.

  • Please Please gather all the PROVEN facts you can. Post them here so they can be compiled and presented to basically everyone who can make a difference in the hope that someone anyone will take our side and see reason. Recently a workshop was held https://www.regulations.gov/document?D=FDA-2017-N-1094-0001 in which they had an open forum. A group was trying to get only 100,000 signatures on a petition to force the workshop ppl to realize there are real people out there suffering. Unfortunately only 38 at last count had signed!!!!! We cannot affect change without banding together. Also unfortunately the time to submit your signature closed 7/10. I will keep you informed if I find any more like this unless it offends people because it’s political in which case I will shut up.

  • I have had chronic pain due to heart surgery for 4 yrs i also have sciata my cleveland clinic doctor refused my request for oxycotin which i had been prescribed the lowest dose for 3 years. I am in so much pain. I have followed all their instructions and there are no signs of abuse. This irritates me so much. They create drug addicts. If i knew how or where to buy crack cocaine i may.

    • Hi Brenda,
      Crack cocaine won’t help your pain.
      My cervical spine has irreversible damage caused by a neurosurgeon in 2013.
      After 3 surgeries to relieve debilitating pain, I had to seek pain Management.
      I found that Pain Management treatment varies between providers. The worst are Major Medical Centers who rely on government funding for research.
      I was in crippling pain and bed-ridden by December, 2016. Over the past year, my husband & I consulted 5 different Pain Management Clinics and the treatments were inconsistent.
      Providers:
      #1-He had a 40 MME max on narcotic pain relievers despite the severity of pain.
      #2-He prescribed the most expensive pain relievers on the market. None that were on our insurance plan.
      #3-He pushed procedures (some that were not medically necessary) and tapered my pain medication to 20 mg. MME.
      #4-Major Medical Center Pain Clinic. The attending told me, “Eventually your body will get adjust to severe pain and I wouldn’t experience pain after a few years. (At this time, I couldn’t walk or care for myself).
      #5-I received a referral to a Pain Clinic near our home for treatment of “intractable pain.” In March, he started me on a pain patch and a few pain pills for breakthrough pain daily. (Over 3 months, he made a few adjustments)
      The following week, I started intensive physical therapy at home for my neck.
      Within 2 weeks, I could perform basic ADL’s.
      Ten weeks later, he performed a nerve ablation to the Facet Joints in my lumbar spine; allowing me to walk without pain.
      I started aerobic exercise 3 days post-ablation.
      At 8 weeks post-ablation, I workout daily.
      4 days a week/stationary biking (I’ve progressed to 14 miles) + walking on the Treadmill 2 miles + stretching.
      2-3 days a week, I go swimming for 45″ doing laps and isometric exercises.
      I have NOT needed to increase my pain medication, it dulls severe pain.
      Bottom Line: Keep searching for a decent pain specialist.
      I nearly gave up, too.
      I’m not going to a “Pill Mill”
      He does a comprehensive physical and history, explains drug screening protocols and will discharge patients if they aren’t doing the physical therapy he feels pain relief should lead to or fail a drug screen.
      I’ll never be 100% pain free but I’m able to enjoy life again.
      Best Wishes to you.

  • Watch the below video:

    http://my.xfinity.com/video/sessions-announces-new-doj-unit-to-combat-opioid-fraud/1015606339557/Comcast/NBCNews_new?cid=trending_SF_middle

    We need to get as many people as possible write to Mr. Sessions ASAP to make sure they have pain mgmt Dr’s on the panel as well as CPP’s. They need to make sure that while this very real problem does need to be addressed, there are people being forgotten in the furor to clamp down on inappropriate prescribing. If you don’t do this ASAP it will be too late…

    • thanks for sharing that video! That is extremely scary because we all know this cracking down always effects the chronic pain patient in a negative way! I beg anyone reading this to contact Mr. Sessions and whomever else, we need to start making noise and make our voices be heard!!! If we sit and do nothing we will lose it all!

  • I just want to thank STAT for this article. I’m glad to see I’m not alone in my struggles with chronic pain. I strongly encourage all readers to write your senators and representatives and let them know there are chronic pain patients that need opioid treatment and access to these medications. We can’t deny the opioid epidemic we are experiencing in the US and the need for responsible prescribing of these medications, but pain patients are going to have to speak up so that we are not denied the opioid treatment we need to sustain our lives.

  • I have been on an opioid basted pain program since 1999. I have had 2 pain management doctors, the first one died, the second one was arrested for questionable practices. I was having a really hard time getting another pain doctor so my family doctor knows my situation and decided to start writing my prescription herself. I have had both knees replaced ,it didn’t fix the pain, bone spurs, fibromyalgia, arthritis, a torn cystic nerve in my back which affects me every day. I had to take that doctor to court. I had a staph infection wrapped around my spinal column, herniated and bulging discus in my back. If the start missing with my medication now I won’t be able to walk or stand. I just Don’t know who to talk to or where to go. This is my only quality of life that I have left. I Don’t want my doctor to feel like she has to cut me off or lose her job. It bad where the addicts have to ruin things for people that are just trying to motivate. That’s all I want is to be able to get up in the morning and help my disabled husband he is within just a few months of not being able to walk at all or use his hands. Thank You! I just hope something happens before It’s too late and they take everything!

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