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 nerve damage ,severe peripheral neuropathy , a spinal injury, and diabetes. I cannot take steroids due to my diabetes it shoots my blood sugars up to dangerous levels. I have a spinal cord stimulator, but without my opioids I will be an invalid. I have cut my opioids dose to a third of what it was 4 years ago. Now they are saying that I will only be allowed 3 hydrocodone a day. What a freaking joke My pain is not under control at 10 times that dosage . I do not want to be on opioids at all, however some of us have no choice. They are taking away the only thing I have to be halfway functional with no viable alternative. I am disabled now I can halfway clean my home, dress my self with some difficulty, go to the grocery a couple times a month. With no pain control I will become a wheelchair bound invalid with no life whatsoever. I am scared to death not because I am an addict but because i will be bed ridden with pain. I am bed ridden with pain 3 days a week now with the opioids. It is like facing death row for being crippled. Literally being without the pain meds will be a life of torture for me I am terrified . Is anyone forming a legal defense for those of us that are not drug abusers and have legit reasons for taking such drugs. If there were a viable alternative i would take it in a heartbeat , but there is none trust me. I have been to every health system, neurosurgeon, pain clinic, spine clinic, and any doctor that might have a solution other than pain meds within 200 miles of where I live… They cannot fix me and they cannot give me an alternative to the narcotics. I have been trying for 10 years.now trump is sentencing me to hell….

  • The government is running my life. Chronic Pain is a serious matter. The easy way is to just cut out pain medication for the American people. This certainly shows they are doing something to earn their massive funding and relaxes the duty of the DEA. What is hidden here is the Constitutional rights of an American population who suffer and become disfunctional without pain medications. There are many of us. We desire to contribute to our society, yet we are forced to condemnation because of another American population who abuse or they are unfortunately victims of addiction. My study has revealed that the use of narcotics has no adverse effects on the human body unless one is allergic, taken in combination with other drugs or of course, one is an addictive personality. The fears of addiction does not apply to everyone and I am living proof. My use of narcotic relief began 38 years ago by my Doctor in the United Kingdom, where I lived part time. After I came home for good, I found pain treatment very hard to get. My Doctor, who is wonderful and attentive would not perscribe and the pain was so great it was seek other solutions or suicide which I am against. I went into an out patient surgical procedure and this is what happened: they burned the nerves, caused something I never had before called restless leg syndrome, I was pain free and feeling great without meds except the start of restless leg (still take one a day), it lasted for 3 months only, cost me $100.00 per month and my insurance company $1000.00 per month for me to be pain free, was told I could not repeat the procedure for another 6 months. I told my wonderful Doctor that I could not see this as an overall solution and ask him WHY I should not go back to pain medications which is a lot less money and no side effects. He gave me the pain relief and has been doing so for over 3 years, while watching me closely. He knows I am not an additive personality nor am I one to abuse the privilege of pain relief. I am perhaps the only patient he has that he will perscribe a narcotic to. I have enjoyed the right to life, liberty and the pursuit of happiness granted to all American’s; but that is steadily being replaced by the bias American government dictatoriship .

  • I have needed opioids since Jan 2006 for degenerative disc disease. In recent years, I have willingly signed pain contracts because I am very careful with my pills. After a recent move to a different state, I find myself at “ground zero” having to prove I am legitimately in chronic pain which is a slow, lengthy process. If not for recent research and changes in the law that make marijuana for pain legal and easy to get, I would have killed myself weeks ago. As it is, having to be stoned every day is very depressing and I have to continuously tell myself it’s not for much longer. Even so, it’s getting harder every day to resist ending my suffering.

  • Thank you for this. I’m affected Right now. I broke my back, ripped up my hip and injured various parts of my body after suffering for years with fibromyalgia for which I took nothing. I’ve been on a low but steady dose of codeine and I take as little as possible, but in six years I’ve never asked for early refills or lost prescriptions or done anything to imply I’m an addict. I’ve actually weaned myself down from what I was on when I first met this doctor. Five weeks ago I injured my back and although I tried to deal with it myself, I ended up in the ER Because could hardly move, had shooting pains in my right leg and was literally passing out from the pain. I was diagnosed with a severe muscle spasm and sciatica. For four weeks I could barely walk and when I asked for an early refill (5 days early) I was denied, told to make what I had last. That week was torture. The next week I was rediagnosed with a slipped disk by my physical therapist, which explained why I couldn’t move my right leg. I asked for a slight increase in my painkillers, explaining the severity of my pain, that I was all but stuck in bed, couldn’t shower, wash dishes, pick anything up off the floor, put shoes on, sleep more than two hours at a time despite ice, tens unit, topical, stretching… And I asked for additional treatment for my back including imaging to verify the slipped disk. My doctor said no to increasing my painkillers and ignored my request for additional follow up on my therapists findings.
    I live in a very small town where one hospital serves everyone. I don’t know if trying to switch doctors within the hospital will make me look like an addict searching for easier prey but I honestly feel like she’s purposely torturing me or trying to teach me some life lesson. This is really not the time. I do not know what to do, but lying here suffering does not seem right.

  • I just went on here to show my husband Julie Roy’s post. But she has obviously deleted it, so others cannot see how her advice was refuted! I still wonder, what makes a doctor feel worse? If a pain patient dies from an intentional or accidental overdose? Or if a pain patient commits suicide because the doctor took away their pain meds and they had to end their suffering? Already thousands have taken their lives because of uncontrolled pain! Our government is blood guilty for this! And so are the doctors if they go along with this!

    • If this wasn’t so serious, I’d be laughing at how ridiculous the entire situation is. They, the medical community as a whole, have prescribed me some form of oxycodone since 1985 on a regular basis. But since this shit-storm happened with people dying and overdosing, I cannot get a prescription for anything BUT methadone or suboxone…both of which I get every bad side effect listed plus a few more. Suicide has crossed my mind because of this…It’s really effecting my life in very negative way. I absolutely do not have any desire to quit oxycodone, why should I? Because of somebody else’s mistakes? Evidentially. If I tell them I’d like to die over this crap, they’ll put me in a rubber room for observation. I thought doctors were out to help you…I see them helping themselves first and foremost…phoney assholes with PhD’s to hang on their wall. The doctor’s all just defected all over their Hippocratic Oath…what a bunch of hypocrites.

  • I would like to know where I can live that is more conserned with life of people instead of what people are taking or the slim possibility of addiction. The main thing that the tighter controls have taught me is that hard work and skills really only get people so far. Also I have decided that I really do not want to live in this country much longer and if I cant find a place that wants me for my skills and abilities and is willing to let me have medications that make life liveable so that my copd can properly be treated. I really have no desire to go on living in this world, as I take the hint… I am far better off dead than living in this world. I love myself and others, and I am torn between the lack of care and those that I care about. If it were just me, I would have ended my life years ago as the pain and suffering that I go through gets worse day by day. Not many doctors in and political type care how many they force to end their life because it is really the only way for most to end their suffering.

  • feb 22 2018 this opioid crisis’s has been used by some to torture kill real chronic pain patients no other illness,has the pain patient been told,we must add drug abused medicines to your rx pain medicine making to little to no effect for severe great pain,at first i was beening told to blame the drug addicts,let me think about this,how in world is this to help me,all its does is add anger to my very severe great pain,i broke my neck in 2003 had two neck fusions had surgery on left arm,drill holes to try to repair great pain shooting down my neck to finger’s,didn’t work,so they went into lower part of second neck fusion to do repair work below c-7,that didn’t work to remove any pain,now i’m not blaming these great caring doctor’s their was great damage done,in 2015 they gave me oxycontin 30mg 3 time aday,and it releved 1/2 of the great pain.this almost lasted a year,till the doctor was told by those in power that too much medicine,and they didn’t even look at my medical records,just what medicines doctor was given me,since then had my medicines reduced and for what reason they were working for my great severe pain,guess those in power said its does matter the man blood pressure is sky high,and he had a stroke,it does matter that in 2015 all my doctors were talking like i was getting much better,now they look at me and say dead man walking,what happen to the oah medical doctors took to ease patients suffering,i’m really dieing from my pain level being so high,and the high levels of opioids are the only treatment that is working,no wonder i see real chroni pain patients killing themselfs,they are training doctor not only to close their minds and hearts to your great pain,but to take you off them even if it kills you not fast but in slow great torturing pain,this is evil,ungodly,unamerican,bet hitler’s in hell cheering,sorry if this make you mad,but its done mad me mad while they killing me on top.

  • I agree the addiction crisis is terrifying and that something has to be done. But I am also terrified as I am a chronic pain patient. I was diagnosed with Autoimmune Rheumatoid Arthritis 15 years ago. Morning, noontime, night, over night. The pain never stops. For the first 10 years of having RA I had some luck with biologics but through the years they have all failed. Working went from something I loved to the last 5 years something torturous. I couldn’t get through a day of work the pain was just unbearable my doctor prescribed me pain meds. They saved my life! I mean I wasn’t running through the halls but I was able to complete a full days work. I wasn’t calling in on those days I just physically could not move from my bed. I was able to go to my daughters games. Take her to friends and just generally do mom things that I wasn’t able to do before. My pain meds gave me a lot of my life back and with the opioid crisis going on I know we are going to suffer. I can say just in getting my last two scripts I have had a hard time. I am absolutely terrified of this current situation. I understand there is a problem but they also have to understand there are people who can not function without these medications

  • Thank you this article and the 3 people with their contribution/testimonies
    hit it right on the head I couldn’t of said it better! just now hitting roadblocks on my meds as new ins is requiring pre authorization I never needed b4 and just found out it requires caremark/cvs – something not shown on the sign up page in the market I would not off signed up had I seen it and what I read here about then limiting to 7 days supply what happens to the balance of the quantity prescribed as being pain med don’t think allows to carry forward so they forcing us to see doc every 6 days? conspiracy? ridiculous violation or rule for sure for chronic pain patients I think law suits against them will be seen I refuse to use them and will cancel the insurance

  • Thank you for this and the 3 members contributions on this article. as a responsible pain patient I am just now getting affected by the roadblocks against us with insurance now requiring pre authorization for meds I have been on to treat my pain for years & pharmacist said new laws Jan 1 so I found this statnews as I’m researching for advocates and United fronts/groups who are fighting back on this. Gov war on drugs zsars are hitting the wrong people while the ones this crisis is caused by will continue to get what they want on the streets as they always have. those of us in compliance are in the tracking data bases and have been a long time, we use insurance another record tracker & we work because the meds help us to do so rather than be stuck on disability – so Im very scared of the fallout going to happen with this as we can’t get relief from the pain. This article hits it all perfectly on the head I could not of said it any better.

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