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.

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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  • The government has left us. Those with any form of chronic pain. We voiced our opinions from the mountaintops, still we have not been heard. If we refuse things like injections, implant devises. They shun us or mark our files with red marks. There are some of us who can Not have injections. I have cerebral spinal fluid filled cysts throughout my sacrum pushing my nerve roots and causing more nerve damage everyday. If an injection hits one of my cysts, I will have a spinal fluid leak.

    What used to work for some of us was opiates. Now we get tossed a 10 mg and we are told “it’s all you need. We have been taking them to survive! No it’s not a cure. For many of us there Is NO cure. We are expected to seriously suffer until our deaths. For a good portion of us suicide rings true. For others they can not do that. I know “get it”.

    The remaining are either going to suffer greatly until pain kills them, others are going to the dealers seeking herion or anything else that will ease there pain.

    With opiates, I could help a some around the house. I could walk a bit as I go.

    I asked for a light weight wheel chair that I could use. Because without opiates I can not walk. They sent me a walker instead….

    It seems to me they don’t want us here.

    Cyndi
    55 years young

    • Cyndi, I totally agree with you! Thr corrupt lawmakers sure did abandon us! Seems to me their goal is to send us to the streets or suicide. I bet their just hoping we go away . Thousands upon thousands of pain pts have taken their lives to end the pain. What kind of country is this anymore?!!

    • I am living with sever pain from at least two diseases. The system pretends we are not here. I have personally contacted Pres Trump, both my senators, my representative, and numerous federal agencies that are involved. None care. One responded thinking I was suicidal and sent state police and an ambulance to my house. Great! Lets keep the miserable pain patient alive. No one cares.

      And because no one cares, sooner or later most of us will reach the point where we choose suicide over misery. I have a small suggestion that may help by bringing notice to our suffering. If/when we choose that step, I suggest we leave a note that blames the President. It is actually his war on opiates that is causing our pain and suffering. Maybe when enough of us take this step, someone will begin to notice and even correct the problem. I no longer know what else will help. I generally agree with his political issues but to be fair, he is killing us.

      Just my thoughts. I contemplate suicide daily. What else can we do???

  • Agreed & the “new “ epidemic becoming marijuana in my opinion ! They have manipulated perhaps a not so bad alternative drug to an epidemic too & I guarantee there will be lawsuits coming soon from marijuana, because it’s not the “hippie “ marijuana of the Woodstock era! It’s a potent lethal drug that is causing addiction & mental suicide rampage among its users!! The opioid crisis is from Dr’s over prescribing & making money on people with authentic pain issues & those without pain issues to ensure their pockets are well padded!!!!

  • We are 22 years out in this created opioid crisis, and still no closer to a fact based response. It is really looking genocidal. The healthcare, insurance and pharmaceutical industries are making a lot of money off of the miser of patients. Through a process know as Regulatory Capture, all of our feral agencies no longer work to protect people. The FTC failed to enforce laws on marketing, allowing these industries to profit from all sides, by denying care to people who might become addicted or need medical care, to the high end fly by night treatment industry.

    Opioids are so scary now, that self described experts can charge thousands for corporate speaking engagements, designed to help them profit from this epidemic of despair. Formerly credible academic institutional are now peddling pseudo science and misinformation to please their corporate sponsors.

    We are in post Fact America people, where anything can be advertised as long as it sounds like it is a public health message. We can see the damage all of it is doing as the suicide and overdose rates climb. They turned this public health problem into a marketing campaign, where anything goes.

    Whether is tainted CBD oil, marijuana or JUUL vaping for kids, it is all A-OK, as long as there is money to be made. There are no laws enforced anymore when it comes to health marketing, and pain is a really profitable topic.

    If I was as sleazy as these health markers I could start adverting Leeches for any random medical problem. There are no ethics in healthcare anymore, any physician can set up a phony website and peddle anything. They are peddling plastic surgery to teens on TV, addiction treatment centers where people die, and rancid fish oil.

  • When ,… That is what we to know. If they are not willing to return medically necessary meds that efficiently treat our painful inflictions, illnesses,and chronic conditions ,so that we can live some sort of quality of life,then let us be able to elect death with dignity, I personally have had enough of this agony…

  • im forced to se a pain management doctor/clinic who cares nothing about me.Knows nothing about my history even though I have all the reports and a history of 13 spine surgeries..who wanted to do EPIDURAL STERIOD INJECTIONS when I had just taken 3 rounds ( yes 3 seven day Medrol Dosepaks) I refused the procedure…and they had no idea I was having a bad reaction to it…they never asked …I , having a hospital Pharmacy job history have heard all the drawbacks about steroids..but I was down for a solid month with a severe pinched sciatic nerve…only meds I got in the ER was Tylenol and ibuprofen ALTERNATING BY IV…and all the while telling me it worked as well as any narcotic….THATS A LOAD OF BULLCRAP !!!!!!!! even the steroids were not working…by going to my regular doctor I got Tylenol # 4…and even that was not working…I know first hand by going to the ER BY AMBULANCE that they are treating a person in PAIN was total torture for me….Thats what landed me in PAIN MANAGEMENT…I had two more ER VISITS and was treated better but not much by the doctor in the ER …Then being a pain patient for numerous years …I then encountered a sudden CHANGE IN Pharmacy I had used for many many years ….if your chronic your stuck with what your already taking since the PHARMACY knew better that the ER DOCTOR about my PINCHED NERVE….>???ive complained to Pharmacy Board about a pharmacist completely changing a script…because he knew BEST????WHEN DID PHARMACIST BECOME DOCTORS??

  • I am battling the problem now. I travel 8-10 hours to my ortho dr., because a dr in my area missed up my spine from an over invasive surgery. I have had 14 surgeries to help correct the mishap. I have seen other ortho surgeons and some advised they were afraid to touch me. I have tried pain management and it has not helped and and is temp patch. They made me feel like a criminal instead of victim. Do they actually think the criminals are going to come in to pain management clinics for help? Who is God’s name came up with that idea.
    Well my dr. Recently changed from a top Univ Hospital and was Prof over orthopaedics to go with a chain of orthopaedics sports. I can not get through to him because his secretary keeps giving me the run around. I drive 10 hours for my appointments and she says the outfit he is now with does not issue pain medicine scripts. I was never notified of this policy or his change of practice location. I am the victim trying to deal with chronic pain that leaves me feeling like my head sits on a toothpick and I would love to just sit it on the table for a rest. My pharmacy has been the same pharmacy for over 17 years even before the mishap. I don’t drink. So that leaves getting relief from alcohol. It would be easier to obtain. My state doesn’t have medical marijuana. I am 64 and just want to manage daily chores, ie., folding towels, sweeping, sitting on my stool working in flower bed. Now it is impossible to even accomplish the littlest things that many never would think could be so painful. What do you do. Maybe that is why many buy stuff on the streets because of what doctors do…They just don’t know what they actually purchased. Something that dealers laced with other junk. Maybe our government has created this to eliminate over population of the elders. Who knows? It sure leaves honest pain victims wondering.

    • Yes, I agree 100%!!!! Real chronic pain sufferers are being made to feel horrible about ourselves & unable to perform simple activities of daily living!!! It’s horrible, horrific & so so wrong!!! I’m a RN, my pain is so incredibly bad I can barely move, I have a minor child to care for, my pets, myself!! I’m not a addict & neither are the majority of us, we are paying for some poor choices some Dr’s have made & addiction & it’s 100% unfair!!! I’m with you, I feel we have been left to die!!!

  • Write your senators and anyone who is directly or indirectly responsible for this blatant injustice and don’t stop until we get the change needed!

  • To the politician: when did my pain become your pain?
    or maybe you had a personal experience of someone who overdosed on drugs and I understand that but….some things are just better off unsaid. You see I have to own my pain but you don’t. I take no drugs for fibromyalgia and that doesn’t mean I don’t need them. I’ve read these posts and people are in serious pain. May God help you!!

    • Write your senators and anyone who is directly or indirectly responsible for this blatant injustice and don’t stop until we get the change needed!

  • After reading the above comments and experiencing these intrusive regulations first hand, I have to add I’m a True Libertarian. I feel for chronic pain patients who have to suffer THEN fight the government and doctors for their pain medication because of what mindless junkies do. The so-called freedom-loving Republican Party is in knee deep as well. Folks, this is a land where Personal Responsibility needs to be encouraged! I’m also a gun-owner who feels the same way about guns. Why are Republicans so passionate about our gun rights and yet not giving a crap about are quality of life???

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