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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  • right on!I live in fear on how I am going to handle my chronic pain from lupus spinal stonious and migrains I don’t take my pills till I hurt really bad and that’s not go you need to control the pain and not wait till your out of your mind with pain I have taken them the way the Dr told me never been in jail or tried any other pills or stree drugs so I don’t think I will If they take this pain pills we will have to look for something to help the pain then we may get other bad pills could you live life in pain every day like I do and many others no hell no It is like being ing labor and never having the baby. please don’t take our life away..

  • I am an EMT trained and also worked in three hospitals, one teaching and pain management was the real reason opioid became such a problem. They would force oxycontin, morphine, fentyenl and strong drugs if you didn’t jump through degrading hoops they forced you to extra expensive appointments and used as teaching specimens for residents I was forced to spend up to 3 hours in the pain management and they got away with it. I can’t tell you how often we are threatened and the use of duress that if we don’t follow this shameful abuse in us they would stop the meds and no I’m patient detox inpatient the suffering was horrible. The last straw for me was saying if I didn’t take methadone I would be dismissed for not following there dangerous treatment, I chose to leave. Pain management are the real pushers, before your local doctor knew you and worked with you, pain management came and the government gives the money to provide patients treatment, giving their favorite drug methadone which I saw was dangerous. Now they want them to get millions to treat patents they addicted. Th e clinic I go to in New York using threats coersion and duress forcing us to go the abuse counselors accusing us of abuse, while the doctor at the time rarely refilled prescriptions on time sometimes days or weeks after it was due. Hundreds of thousands of emergency and ambulance costs occured. Call centers in medical monopolies make it impossible to even be connected to one doctors office, they only are allowed to email. It is shocking even urgent messages are unanswered I must have been forced unnecessarily into 14 unnecessary life threatening withdrawals I am 69 I have so many unnecessary dangerous withdrawals, and life threatening withdrawals my health declines and our government feeds these monopolies as they cause death to chronic pain patients. The government declared war on us, and now the suicide rate up 30 percent out killing overdoses. Some abuse so all are punished, causing desperately to find even dangerous ways to control pain. If we truly are a free people then the government as no right to dictate, how much pain we must indure. Chronic pain patients give up crawl into fetal positions and pray that death comes, some free country The war on us must end if not those who say they are experts are getting rich off the suffering of people whose little quality of life will be taken away. Personally instead of doctors rich from our suffering of they are refusing to lessen suffering, an alternative place should be set up, for those will will honor their vow first do no harm. Affordable care act is causing wide spread death while hospitals squeeze, patients and insurance companies dry. Doctors must not be allowed to threaten, force patents to submit like animals with no rights. When doctors as so powerful and the are allowed to cause the death of 800,000 a year from preventable medical errors. So much carelessness I have seen and the use of Do not resitate, order not used as C P R but a way to lessen care given. We must break up medical monopolies if not thousands more will die. It is shocking how much government knows about what really is happening in teaching hospitals because of medical jargon, a person who knows how to read a medical that was altered to cover up a serious medical errors can find out the truth of how deaths are covered up, the number one cause of death is really caused by medical errors and the estimate is very low from what I have seen on acute med floors and ICUs Not only that secret fees passing bills massive violations of the medical records, signing papers giving twenty of your rights away. Most dangerous are calling centers the death rate will skyrocket very soon, if medical monopolies are not broken up. In NYS no place to reach any department, the new crazy call centers make dealing with NYS government thanks to the insanity of progressives New Yorkers feel powerless I pray NYC wakes up before progressives destroy the once great state of NY. Our Governor laws against New Yorkers is nothing short of insane. To the babyboomers you are the new targets of an out of control psychiatric and Medical profession. We had otherwise up Big Pharm must not continue to peddle drugs in TV and Magazines, where is the FDA who do they really protect, bribes to doctors continue, reform must happen before greed kills thousands more, while our children and military are drugged to suicide because the aid affects of powerful and extremely harmful side affects. Before you blame mass shootings in guns look to the fact many actually took these deadly psychiatric drugs either just going on the during the attacks or coming off of them. Progressives would have you believe guns are the problem. They are not, it is due to shock treatments which are now done secretly, I asked a few hospitals how many ECT treatments do they do. Most said we don’t keep track of the amount, really. Here is a sobering thought shock treatments are a huge money maker for hospitals, I myself had a medical problem and instead of being taken a medical emergency room I was taken to psych WE mocked and insulted, forced drugging to unresponsive state brought to med emergency room for star chest xray, and head CT, brought back to psych emergency tied up for hours, denied medical aid twice then arrested and in a locked unit, since I had worked on these floors they knew I never had a mental illness, after those two weeks they finally looked at my extensive medical history this is called malpractice 60 percent that are brought to psych Emergency rooms are misdiagnosed and Since I could have died, the sick thing is no attorney will take these malpractice cases, not enough money and with no way to stop this, they die. Another reason I was taken to psych was I am a big time President Trump supporter and even after the he ok I went through, I still stand with him. Progressives pumped thousands into these medical monopolies to make it appear Obama care was a success tenner what they told you without it people will die, wrong because of it people have died. Greed will never allow Medicare for hall, it’s a pipe dream. Doctors barely accept Medicare from elderly and disabled.

  • Dear Virginia:

    I know that you are in pain and have suffered terribly but please do not write this type of posting. Your logic is disjointed and it appears that you are confused about who is responsible for your pain. You are in no condition to lay the blame for the opioid crisis on political parties, teaching hospitals, methadone, or anything else. Testimony like yours has been used by lawyers and psychologists to deprive the rest of us of needed pain medication. You are seeing conspiracies everywhere, and most of the time they just don’t exist. You are, however, right about one thing. Money is the root of the problem. I can’t believe that you are an educated person (you say that you are an EMT) and write the things that you do. I am respectfully hoping that you will realize that your post makes it appear that you are a very sick, or very ignorant person.

    Hoping and praying that you will find some relief,

    Steve Speer

  • I have been a pain patient for 30 years. I also worked in a teaching hospital as well as 2 others. I am a trained EMT. I was one in the 90s when pain management arrived. These are the ones that caused the situation we find ourselves in and now millions will be given to those who caused it and now they will make millions treating those who are addicted. I learned early, that they have drug reps big time. You would think they know opoids. Yes, they do but money is the root of all of it. When you go to pain management, you are degraded, to get patients their needed meds they must jump through hoops, have to be subjects in teaching hospitals sometimes forced to be their hours for residents to learn. I learned it you do not follow each hoop the stop your meds suddenly and the dismiss you, as you become extremely sick so if you are on high doses, it becomes life threatening. I am in a medical monopoly clinic and the doctor does it 28 days, he will refill whenever he feels like it , worse was a three week period, thousands of emergency and ambulance dollars. It may be 30 days, maybe a week when ever the mood hits him. Because this monopoly owns this clinic and the ER in the teaching hospital instead of dealing with this issue and I have not received an answer to a urgent problem. He waits until after I am forced to go to that Emergency Room, being I am 69 my health has gone down. I believe he has caused me to go through 14 unnecessary withdrawals that can be verified by NYS. What is happening to patients in Rochester is a crime. One of the favorite drug and the most dangerous in my opinion, is methadone I have refused to use methadone, the pressure to take so many higher doses of opoids was so bad they said if you do not follow the treatment you will have to leave, they were shocked I left. Now less then a mile from my house a Thousand patient methadone clinic surrounded by a large amount of security is present in the parking lot and inside like a police station, even they don’t have as many in a real police station. Making big bucks treating those they forced into addiction. I feel that there is some a time when this medical monopolies
    Just be ended a danger in all patients and what Obama care did to bring down our heathcare system. So many secrets it holds, it is beyond shocking this post would take me two days to post everything only I decided to write a book exposing Obama care for what it truly is a fake success that democrats want to bring back thanks to Obama care the opioid problem for those that use it for a high has risen to a huge problem. Democrats and I use to be one is now pure evil because they still want to have obamacare, which actually would cause more deaths as it continues to remain biggest rise in costs . Hospitals love all the money, grants and big bucks . Hidden fees and violations of the typos laws God help us all of this is allowed to continue this fraud. I lost track of how many medical errors and other reasons I have suffered over 30 plus withdrawals plus near death issues. And I worked there they have no problem doing this to me what about those that lack medical knowledge. The end

  • I too have chronic pain with too much too list without eyes rolling. I have lived with this over 40 years and it is a challenge just to live your life period. I too take as little as possible since I started pain management over 14 years ago when Advil gave me gastritis and bleeding ulcers. My daughter is a doctor and she is so angry that the government is dictating to them what and how to prescribe their patients. I’m not going to go on and on because unless you walk in our shoes you have no idea how big of a struggle it is to live every day like this. I would definitely not want to be here if they stopped us from getting our pain meds. Why isn’t any drug company trying to come up with another pain med that works. Because they don’t care. This is so pitiful that I hate even putting my two cents in.

  • I too am in chronic pain, and have been since a spinal surgery in 1993. After trying many ways to manage pain in the 90’s, a miracle occured when Oxycontin was prescribed. I have been on this medication for 15 plus years, and it works. Now, our government has thrown a blanket on Chronic Pain and is making my life a living hell. In the state of Missouri, we can only be prescribed 59 milligrams per day. This low dose does not touch my pain, and I am looking for an Advocacy Group to join to help people like me get their quality of life restored by getting my normal dose of Oxycontin back. Real people who are not drug addicts are being forced by our government to live a life filled with pain and despair. Please, let me know who I can write to that has the ability address this matter. I am nearly 60 years old, and my life as I knew it has ended. Now, I lay in bed, suffer daily, and pray. Please, help me if you can.

    • Nancy, Look up dontpunishpainrally.com. A woman , Claudia Merandi, started the group. They have had several protests NATIONWIDE in every state to try and get our voices heard. Tgere’s also a Marine Vet Robert D. Rose in TN who has taken on class action suits in several states, He’s not a lawyer, but a group of pain pts fighting for our right to pain relief. You can find info at sickofsuffering.com. I am so sorry you too are suffering. I don’t think there are many chronic pain pts left that are being treated humanely. We must continue to call our senators, media, expose the corruption and lies, greed. There should be an investigation into Andrew Kolodny/PROP, CDC, FDA, PROP members, So many profiting off the bodies of the chronically ill. They know dam well they are causing thousands and thousands to take thier lives to end the pain! Sure does help to fix the social security problem doesn’t it?! No bodies, no SS payments going out.

  • We are at the mercy of bureaucrats, this is what communist countries do, I never dreamed we’d have a government that would be telling Dr.s what they must do, who’s fault is this, it’s over so lets face it. I was a pain patient for many years at the same clinic and never had a problem till the government had my Dr to reduce my meds to where it no longer worked, I voluntarily quit, why go once a month and jump expensive hoops for enough pain meds to make you want relief. It’s over for me, now my days are spent in bed in the one position that causes the least pain, wanting to die because I no longer have a life. I just wonder if the politicians and Bureaucrats had sudden constant pain if they would hold the rules for us to themselves to obey, it’s just maddening. It’s easier for a mother to kill her child than for a person with crippling pain from a bad, bad, bad back get some relief. God Help America.

  • I’ll be 75 in a couple months and suffer with chronic back pain. Scoliosis, bulging discs and degeneration of the spine have lead to a ruptured disc 12 years ago. Doctors recommend against surgery since fusion would just increase the likelihood of future ruptures and surgeries and more not less pain. I was able to obtain low dose opioid tablets for a number of years which allowed me to continue to be active, I cycle 50+ miles a week plus still work full time. A few years ago the medical practice I was treated by made a change to their policy’s which suspended prescribing opioids for chronic pain patients. This change left me with few options and none that were satisfactory. I eventually found a doctor who operates a concierge practice with annual membership fees which cover his extra time & costs of complying with government regulations relating to opioids. I also now have to be tested regularly and can only get a 30 day supply at a time but at least I can still get the medications I need to continue to function. As other have mentioned, I still have pain but my low dose treatments which I do not abuse, take the edge off the pain and allow a quality of life abet at considerable extra financial cost. The government should separate the legitimate patients who need opioid treatment from the drug addicts so patients and their doctors are not punished for the abusers actions. One size does not fit all.

  • I agree with you, I have chronic pain since my late 40’s, unbearably. I’m a nurse too. I can’t take care of patients anymore & if I don’t have my pain medications I can’t care for myself or my family. We aren’t drug addicts & should NOT be treated as such!! Sometimes pain medications are necessary & pain is known as the 5th vital sign. Please stop treating us as drug addicts & making us feel less than because we suffer from extreme pain every day of our lives & we need medications, just like a diabetic!!

  • I am in my late 70s and within the past year suffered a fractured shoulder and 5 months of excruciating sciatic nerve pain. I resent being treated like a drug addict, being made to sign papers and have urine tests for so few pills, it’s ridiculous. So, I agree with all the comments: this legislation is too tough. Older people in pain are not going to become addicts; we simply want some degree of quality of life. We are not looking to get ‘high’, we are seeking minimal relief from debilitating physical pain, which leads to depression. Acetominaphen and ibuprofen are worse for your system in the long run and can kill you. Who addresses that? What other form of relief of severe pain is there? In Georgia medical marijuana is illegal. What else is there? Why can’t these lawmakers understand they have taken away options for any of us who are not in nursing homes, hospitals or hospice care, to name a few. It’s as if having severe pain for months is OK as long as you’re at home. It’s sort of like gun control: take away guns from law enforcement as well as from the potentially dangerous public, because, who knows, maybe there’s some power-happy cop out there, who COULD wrongfully kill an innocent person, so, yeah, take away their service pistols as well. Not really that different. People who seek relief from debilitating pain are not potential criminals or abusers. Our state governments need to be able to differentiate and made adjustments to existing laws.

    • They just recently made gabapintin a scheduled med I got that for my nerve pain this government is determined to make people in pain suffer and or so expensive they just kill themselves, THANK YOU Trumps war on opioids and I voted and trusted you.

    • Yellowbird, I chose to reply after reading all comments and yours is most relavent to us. One point being missed here and so sinister I would like to point it out. Short version, My wife endured spine fusion surgery ten years ago and has as much titanium as bone to keep her upright. Age 53, And under pain management since surgery. Myself 58 Y/O and just say I am 2 inches shorter from disk degeneration. Also under pain management since 1984. We take “as needed” not as prescribed. Often having excess at the end of the month and even declining some hydrocodon scripts. Regular drug tests and take NOTHING other than prescribed except OTC. At my last appt I mentioned tripping as losing walking function. A problem as I do run a full time farm and take care of both elderly parents. The Doc said when I start face planting once a day, More would have to be done. Situation outlined! Yesterday we BOTH received certified letters notifying us we were being dropped from our healthcare for failing a urine test screen. Suspicious as we signed new drug test forms two weeks ago and the wife has not taken a test in 4 months! So now, No Doc, No meds, And the wife also gets her B/P, Anti depressant, cholesteral and liver function meds. All gone. And with the stain of being labeled an Illicit user good luck finding a new provider! I noticed so many here are my age and older, It brought to mind yes we are older and with age and years of hard work comes issues. It also brought to mind the fact I have filed and paid income tax for well over 40 years and am fully vested in SS. As are so many here. If we die its a win, If we die while taking pain medication and listed as an “overdose” Its a win win for the agenda. Right! I will exist as long as I can be useful in some way to the world. And understand, We HAVE been useful. We would love to be useful many more years. We are not addicts or abusers. We are dependent, Dependent to walk, Dependent to live, Dependent to get out of bed each morning! Dependent to raise two sons. One in Aeronautical college. Second, At 14 played violin At Carnegie hall last week bye the way!!! We understand hard work and commitment! However I will cease if I am a burden to others. But be damned if I would give them the satisfaction of being a statistic! I have worked part time as armed security and volunteered as armed security for years. Its a surreal thing to think of something you have always depended on to keep you and others safe as something that may very well be a last resort from a daily living hell.

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