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


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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  • In approximately 1995 I had a full MRI of my spine completed & the neurosurgeon said I had degenerative disc disease. He went on to say; I was okay then but in about 10 years I would start having all sorts of problems. It was almost 10 years to the date when it started; I had to hire a lawn crew to care for my lawn as it was to painful for me to do myself. I had to give up sand bass fishing because I couldn’t stand in one place for too long due to the pain. I also had to give up golfing because of the twisting of my spine. I used to play a lot of other sports when I was younger, after my service in the Marines. But during one of my many games, I broke my left ankle in 3 places. I’ve had 3 reconstructive surgeries but some of the rotating ligament had to be removed so I’ve been living with bone-on-bone issues ever since & haven’t been able to run or have any low impact ability (like sports) either. I only mentioned that because I was living with that long before my spinal problema started. I never took pain medication for my ankle pain except for post surgery reasons. Then in 2007 I lost use of my left arm & had to carry it in a sling. My doctors ran many tests & was getting hopeless until a CT-scan w/dye finally revealed spinal stenosis at several levels in my cervical spine & was crushing my spinal cord. Got referred to a neurosurgeon who performed an ACDF surgery at 2 levels. Anterior cervical discectomy and fusion (ACDF) is a surgery to remove a herniated or degenerative disc in the neck. An incision is made in the throat area to reach the front of the spine. The disc is removed and a graft is inserted to fuse together the bones above and below the disc. I eventually regained the use of my left arm but was left with a titanium plate & 6 screws as a souvenir. Still didn’t take pain medication except for post surgery reasons. A few years later, 2009, I started having neck pain again & had to have another fusion surgery which failed; the bones didn’t fuse properly & was left w/daily stenosis pain that radiates down my shoulders & feels like I’m being stabbed in the scapula area. Trigger point injections were tried but failed too. Soon after my thoracic (middle) spine was diagnosed with spondylosis which feels like an elephant standing on my back. Have had numerous epidural steroid injections, facet injections & rhizotomys without any success. I started taking pain medication (just so I could function) after the failed neck surgery & the dosages, strengths & brands have changed & increased over time. I was laid off from a 16 year career with a big company in 2007 (same time of 1st ACDF surgery) so I was dealing with unemployment too which complicated matters & somewhere along the timeline I was also diagnosed with MDD (major depression disorder). What I’ve learned over these many years is that I’m highly sensitive to any medication that interacts with the brain serotonin. Have been hospitalized several times, 1 of which, was for Serotonin Syndrome. A pattern that started to develop over time is that I would find a job & then 6-8 months later I’d have to stop working due to the agonizing pain. I would go onto the employers short term disability plan but couldn’t get well enough in time to go back to work & would end up losing that job & wind up on unemployment again. This pattern occurred numerous times. The last job I got was around 2011 or 2012 & I loved it. It was actually in the field of study I took in college. It dealt with the ability to read/understand blueprints & providing quotes on the production of the blueprint item. So I couldn’t afford a cloudy/foggy mind so taking my pain medication as prescribed was critical. I had been at this job longer than any of the others since the 2007 layoff. A little after a year I started having severe lower back pain & was diagnosed with annular tears in the lumbar spine. My pain medication got bumped up which helped with the pain but eventually the pain got so bad I finally had to say to myself that I just couldn’t do this anymore & accept it. This was the hardest thing I ever had to do (even harder than Marine boot camp)! I was referred to the only Mayo Clinic certified neurosurgeon in the entire DFW area. He ordered several imaging procedures to get the best look. He showed me how bad it was & recommended 360° fusion surgery in which he’d go in through the front & the back. Very invasive, no guarantee it’d work & a very extensive recovery which included a big bulky brace & not being able to drive for 8-12 weeks. I live alone & explained my situation to him, that I wasn’t a good candidate & asked him what my options I had. His partner performed more epidural steroid injections but something went horribly wrong & when I went back to the job I loved, I couldn’t think straight & was in the most pain I ever experienced. That was the last day I worked & filed for Social Security Disability the next day. I was prepared for a long road as far as that was concerned & my neurosurgeon referred me to one the top Pain Psychiatrists in the DFW area. After many trials & errors we found that 8mg Dilaudid @ 300/month along with Morphine for breakthrough pain relief worked best for me. In the beginning, before the CDC crackdown & establishing the MED (Morphine Equivalent Dosage) program my doctor appointments were pleasant & getting my medications refilled were never an issue. He also has me on the anti-anxiety medication Klonopin plus the mood-stabilizer Seroquel to help with sleep. Nowadays I dread my appointments because I know we’re going to have the tapering talk & am brought to tears as I plead my case in hopes of not going any lower than where I’ve already been reduced to. My Morphine was taken away & my 300/month has eventually reduced to 120/month. Having 10/day allowed me to function somewhat normally but now 4/day keeps me miserable & bedridden w/agonizing pain that is constant. My doctor is on my side but his hands are tied or he could lose his license. I eventually won my SSDI case w/the help of attorneys. My family helped me financially during my long battle with my SSDI case after my last employers short term disability ran out. I had no income for a good while but I’m blessed with a wonderful family & was able to pay them back with my back pay from winning my SSDI case. My heart goes out to those in my situation that’s not as blessed. Anyway, in conclusion, I don’t know where to turn for help with the fight against the CDC & President Trump as they attempt to ruin the lives of people like us who so desperately need & deserve to get the medication to help us function as best we can. Being bedridden & disabled really sucks & it shouldn’t have to when there is another & better way.

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