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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  • I have a family member who suffers from an extremely painful chronic spinal condition due to iatrogenic injury. Is there any way to have class action law suit against the government on behalf of people who rely on opiates to live as close to “normal” as possible with horrendous pain problems?

    • I feel that when President Obama signed into law some of these restrictions (at first it was 300 MME (Feb of 2016), with a goal to reduce to 120, but is now 90 reguardless if you do anything else or if you see a pain doc or primary only – yet I have a heating pad for the car and my bed and couch, I got a great deal on a tens\ems, every time I get a Groupon for massage I do it, I had my physical therapist help me make a book of exercises so I could do it all year, I signed up for water therapy, and my doc said I use every relief option avalible to me or I at least tried them for months!
      Now the fix for 600 people a year in a study I just read (over all 50 states) might not get addicted, but I go in every 30 days, pee in a cup to show no diversion of my meds, and everything else I can – but I am punished so much every single day- just trying to lift my feet!
      The rules have me choosing between getting the food from the store or making it to feed myself and my disabled dad… Or I have to pick between a shower or laundry… Or sooo many other choices that become so impossible, and I can no longer get relief since I don’t have cancer and I am not in hospice or palliative care! It doesn’t matter that at birth I wasn’t suppose to walk, and I am greatful I can, but the alignment being off has caused me pain that has been significant since I can remember – bone and joint changes from degertive disc and joint diseases, 4 ruptured disc’s and many other conditions and if I want to breathe – no nsaids for me…
      We have to write our local, state and federal representative’s so they see how many people who aren’t currently dying or don’t currently have cancer – that doesn’t mean we should suffer because of the people that “want to catch a buzz” – witch I really have never had, not at 16 with kidney stones and I had to stay on iv opioid meds or any of the other MANY reasons and ways I have taken them – it honestly makes me wonder if you only “catch a buzz” (or whatever else people not in pain use it for) only if the medication isn’t needed!
      So many pharmacy’s have been robbed at gun point here, now I get the door unlocked and opened for me by an armed guard and I am let out the same way – it was found to be by patients that couldn’t get relief any other way! So that leaves the next step to be street drugs! It shouldn’t be people who aren’t seeing the suffering making the decisions far away – by a man who called himself the drug czar on either 60 min or 20/20 who is an alcoholic and he went to court and was offered something good if he stopped drinking and jail/prison if not and he feels like equating addiction to a disease much like breast cancer but I have never met any cancer survivor who was offered half of the cost of their treatment as a reward for going to meetings and getting their tumor to shrink or they could not go to the meetings and they could get chemo or surgery and get their tumor to shrink because no other disease can be cured or influenced by aa/na, therapy, or rehab! It’s just not close to the same – and if od’s weren’t counted twice if the person took heroin cut with Fentanyl, or some other street drug cut with something that is pharmaceutical-grade… It is then counted as an overdose of a prescription opiate and as a street drug but that person only died one time – so if the deaths were only counted once and it didn’t include things like people dying of Tylenol overdose and taking too much Norco or Percocet – I feel like the numbers would be drastically different period

      The other thing that kills me is they don’t understand why narcotics are being prescribed more when the Baby Boomers have now reached an age where they have severe arthritis are breaking hips and arms and elbows and all of those things but also since the late 90s we have also been at war in the Middle East and it’s great that more of our soldiers are coming back then would have at any other time in medical history but they’re coming back with severe pain problems having Phantom limb pain or any other number of things so if you’re going to go back and look at the last decade and wonder why opiate use has more than doubled you need to look at the other factors happening around the same times as well because it’s not all about heroin and it being a gateway drug!

  • I got hit in the head with heavy object fractured my neck split my skull open the ER doctor gave me nothing for pain I couldn’t stand the pain took off the neck collar and ran away my life has been hell ever since

  • I have 4 herniated discs in low back and three in my neck work full time supporting a family I have to take Percocet to move at all don’t like it don’t sleep due to pain normally run out in three weeks and go one without the pain is blinding I really should be on disability get epidural shots regularly to survive pain management is my only hope to continue working and supporting my family the government regulations make it so hard on me even the pharmacy doesn’t like to stock the medication and yes I know a former heroen addict that gets percocet 4 times stronger than than what is prescribed for me they are in a big city filled with addicts and it’s common there

  • I am 30 years old with a genetic spinal condition that causes my spine to degenerate and I’m in constant agony. I blew my first disc at 16 years old and have been in pain since. It is only the last about 5 years that I have needed pain meds constantly to function. Before that I used many alternatives and only took strong meds during flare ups and nothing in between flares. I have been accused by ERs as being a drug seeker solely due to my age. One particular time I’m lying on the gurney crying and trying not scream from the pain and unable to walk after falling when my apartment flooded, so the ER Dr had security remove me physically. He refused to review my history or call my dr. I called my Dr myself and he told me he would meet me at another hospital he had privileges at and he treated me. He had me then file a complaint against the other Dr as c6, l4 and l5 had ruptured into my spinal cord and could have killed me had I not gone to the other hospital. I too have had issues getting meds filled and some of the excuses from the pharmacies are beyond ridiculous! I am trying to keep working but without meds I can’t; and to be honest I don’t want to think about years of agony without effective treatment. What lawmakers are ignoring is that addicts will feed their addiction no matter what and all they’re doing is punishing legitimate pain patients. I do agree with oversight to some extent to keep pill mill Dr’s closed but don’t punish people in need.

  • I was 22 & a college student when I had my back broken by a habitual drunk driver, after being thrown thru a car door. Since then, getting medical care has been a nightmare, as our system tends to view chronic pain patients as addicts. The problem is politicians who treat addicts & patients as the same, when they write legislation.
    I’ve avoided emergency room visits for pain flare ups, for over a decade, once a low dosage of Morphine was prescribed, over a decade ago. Yet, my medical care is now being threatened by new laws & patients which target patents and heroin addicts alike.
    Yes, heron addicts use opioids when they can’t get smack, however this says noting about us chronic pain patients, except for the issue of theft. I stopped flying on commercial aircraft, since TSA stole my prescriptions twice on the last two flights I took.
    However having one of our politicians false claim that 80% of opioids are being diverted because 80% of the people who have used opioids for illicit purposes, does not mean that 80% of the opioids consumed are being used for illicit purposes. It only means that when our perspirations are stolen, they are sold to a number of heroin addicts, because one stolen bottle of pills is not being sold to a single addict.

  • I have had neck surgery with the hip bone used for my stem as well. I am in constant pain with my neck and back I was on opioids for over three years and miss them I can’t have a normal life. I need help so badly been without pain meds for 8 mos. I have no life and feel hopeless.

    • I have experienced the same thing, as I living for 18 months while needing emergency back surgery, because a doctor wrote: “young male seeking pain medication for illicit purposes”. That doctor never even looked at my X-rays, which showed that I broke L1, L,3, L4, & L5, before he decided that I was a criminal, hence the reason my surgeon told him that he was going to retire, after punching him out, because he almost killed me.

  • I am severely crippled and live with a 9-10 pain level. I can not move without pain medication. I am not addicted! I take very little of these meds. but I moan non-stop without them. My inoperable condition is like a death sentence. And now there is talk that I could lose these meds? Exactly how heartless is our government? I will be forced to go in a nursing home to get pain relief. I am on medicaid. Are the taxpayers ready for the influx of elderly and disabled who will soon flood our nursing homes because they can no longer function in their homes with level 10 pain? I see the problem is being exacerbated by these families who have lost someone to a heroin addiction. I am truly sorry for your loss, but please don’t use your son/daughter as an excuse to get my meds cut off. Your child was a drug abuser plain and simple, and suffered the consequences. I am a disabled patient, I have nothing to do with your loss. I use my medicine responsibly. Taking this away from me is not going to bring your child back. It will only make my life more difficult and painful. You need to realize your child made a poor choice, and you don’t take away legitimate medicine from someone who is suffering pain. And to all you newspapers who are trying to make a buck….STOP pushing your propaganda. When a doctor refuses pain meds to someone in pain, and that person kills themselves as a result or resorts to street drugs because of it…well, that is the doctors fault. They and the well meaning politicians are creating the heroin problem by creating a market for it. So their answer is to take away the pills from the rest of us. How does putting a pile of people in pain benefit anyone? And please don’t give me that you’ll get addicted baloney. If you need these drugs for life, the question of withdrawal does not exist.People need to stand up to these doctors and politicians and just SAY NO. No more interference in our lives and telling us what we can do with our bodies. If you are in pain, go to your nearest ER and demand they treat you for that pain and if everyone did this every day the ERs would be flooded and forced to do something, and medicaid and free care will likely cover the cost of it. To me that would be way more effective than rallying at some state house. Can you just picture a couple of hundred people wailing and moaning in pain at the local ER. That would scare the crap out of most sick people. They would wonder what the epidemic is.

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