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.

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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.

  • I am a chronic pain patient also. I have noticed since the so called “opioid crises” began…. the once pain med that worked is now in my opinion loaded with suboxone or they lowered the dose so low that it’s almost worthless! I’m about to retire d/t no energy and so much pain that I can’t stand on my feet more than 6 hours. I want to move to where marijuana is legal.

  • So sorry for your loss and all you are going thru. Are you aware of Claudia Merandi from Dont Punish Pain Rally.com? Her and Dr. Feldman are fighting for pain pts nationwide . They advocate for pain pts being denied pain meds by drs, pharmacies, or if one is in need of a dr I believe they assist. Check out her websites at dontpunishpainrally.com and
    Thedoctorpatientforum.com. They may be able to assist you in some way

  • While I find some comfort in reading that other’s feel and are going through exactly what my family is going through, I have yet to find an effective way to battle the state and government for any amount of help for these patients. My family has been greatly effected by governing officials continuously striping away Medical Doctor’s ability to effectively treat their best patients. Perhaps, had the DEA and State Officials prevented all these money making “pain clinics” from popping up on every corner and ran by Doctors that honestly know little about pain or treatments for pain, we may not have such a huge epidemic currently? Whatever the cause was, we now have a problem nobody seems to know how to handle. My opinion is, they are asking the wrong people for solutions. I, myself, was on pain medicine for over 14 years. With no way to stop without being horribly sick and in extreme pain, I continued to renew my script each month. I honestly had legitimate pain, more than a Tylenol could handle, but I wanted off oxycontin and oxycodone. When my boyfriend told me about Suboxone, I was sceptical, to say the least. I found a doctor that would prescribe it and that day I detoxed and was dosed with my first Suboxone, was one of the best days of my life. My parents, on the other hand, are a much different story. My Dad had Osteostenosis and Diabetes and my Mom has Osteoarthritis. Neither of them had it has ever overtaken their medications and, in fact, my Dad only took 2 of the 3 (40mg oxycontin tablets) that were prescribed to him daily, after three back surgeries . On exceptionally painful days you would have to take three but never over his dose per day. It kept him upright although he was never completely without pain. My mother was prescribed 320 mg tablets of oxycontin and one 10 mg tablet of Percocet for breakthrough pain. Never over taking her dose and able to work to the age of 70. She is still working today. The unfortunate so-called epidemic of opioid abusers has affected them greatly. they took so much medication away from my dad he slipped into a state of depression because he could no longer get up out of the chair walk around, go out to the garage and tinker, go to the flea market or any of the things that he enjoyed doing and it cost him is life with a heart attack unexpectedly 4 months ago. My mother has now been taking down do only Percocet. She no longer receives prescriptions for the extended release medicine that kept her vibrant and able to work. She suffers greatly now. I honestly don’t know what I, as an individual, I can do to help her situation but I certainly I’m keeping a watchful eye out for depression so that I don’t lose her as well. I feel passion for any elderly people who depend on pain medication quality of life nowadays. I feel like I will never stop fighting for the elderly regarding the situation. I just wish I was more educated and able to make a difference. Thank you for taking the time do read this comment. Any advice, help or suggestion anyone has I am willing to listen and explore. God bless all the elderly that depend on pain medication for quality of life in there senior years.

    • In am so sorry for the situation that your mother father had to go thru and still are still going thru. What the government did to us is criminal and each person that had anything to do with making this dissension’s and any other about pain related laws that ruin peoples lives. Should have to go thru, for just one night in our shoes by them selves and see and feel what we deal with 24 hours a day 7 days a week and when 330am comes around and they too will be crying to GOD or anybody for help from the pain they are trapped in.
      Then maybe some how this nightmare of ours will end, for us all that have always followed the DR instructions and never tested positive for any other drugs than what is prescribed. ( OOO yes they make you pee in a cup just like a felon that is on parole) It is humiliating to say the least. It is a new law also now is it great, we are in a place that is so bad people are killing themselves just to get out of pain.This is not right by ANYONE’S UNDERSTANDING OF LIVING LIFE.
      TRYING TO BE A FATHER, HUSBAND A CONTRIBUTING MEMBER OF SOCIETY IS THAT TO MUCH TO ASK?

  • I fell out of my walker after a lateral miniscus removal, landed on my tailbone and ended up with compression fractures of my lumbar spine in 2006. My pain started! Living alone I did what I could. I tried acupuncture, cortisone spine-inoculations, ultra sound treatments, chronic pain clinic. So many meds!!!!! Finally Vicodin, cymbalta, etc. over the years up to Norco. I can honestly say I never misused them. Then the opiod hysteria hit and Kaiser started restricting them. We had to go to the pharmacy and get our supply once a month. This was difficult, however I could have a half way normal life. Then we had to have urine checked before our renewal. I had All of the normal side effects. Which got worse and worse. Constipation being the worse. I decided to withdraw myself from both norco 4x a day and lyrica 3x a day. My primary gave me the normal withdrawal plan ( which was incorrect) And went on vacation . This was in jan 2019. 13 years on opiods. I entered my own private hell, that i can never explain. I am no longer on opiods and it is now December 2019. I am in the same pain that i was in in 2006 except i am expected to control it with tylonal and anti-inflammatory. I am 77 and my ?dr? Says ‘ most old people are in pain’. Oh and yes the constipation DOES NOT GO AWAY- it just hurts more.

    • Your story is very similar to mine, except I have spinal stenosis, severe arthritis and degenerative disc disease in addition to stage 3 kidney disease and reduced liver function and I’m 72. I cannot take ibuprofen OR Tylenol because they ruined my health. After being treated like an addict, I went cold turkey 4/18. I still cannot sleep well. I hurt like before (began in 2010). I have IBD too. I use medical mj edibles to help some. I’ve had many illnesses and surgeries since age 10. If I must suffer, then I’d rather not be here. Thank you government for helping kill seniors.

    • Here is the problem as I see it. NEVER stop taking opioids. Yes, there are side effects that are worse on some, but the advantage of pain relief far out weighs the side effects for most. Your doctors and the government are OVERJOYED that you gave up your pain pills! It’s just going to be twice as hard to get them back if ever you want to. There is an agenda to abolish opioids all together if you haven’t noticed it yet. They want to make it hard for you with all the bullshit with monthly urinalyses, pill counts, and beady-eyed pharmacists. They don’t care if you’re in pain without them! Welcome to the New America!

  • I read an article written by the DEA group that put this opioid law in place. He said the law was never intended to make the elderly suffer by withdrawing their pain meds. That is exactly what has happened to me. My quality of life is terrible because of the pain I suffer. My health conditions are terminal and unless I turn to Hospice I will never be free of this pain. Hospice paid me a visit and talked about how they will make me pain free by using morphine and anti anxiety meds. This is a sorry state of affairs for legitimate pain sufferers. I can’t get relief unless I take the hospice option of being doped up on the addictive forming drug morphine. This move is to
    Keep me from becoming addicted to habit forming pain medicine. Does that make sense when I have about two years of life left? Quality of life is essential as we live each day. But now all we have is poor quality of life.

  • I had a car fall on me , and when it hit me on the shoulders it drove me into the dirt face first. I woke up three days later in the hospital. in pain beyond any thing I could endure ! I was fourteen years old. my life has been ruined and ruled by chronic pain. as I get older it increases . it is all day and night stop. 24/7/365. and now cannot get meds !! I know why people are now doing what they can to get help with this!!

    • Hi Les.
      I feel you’re pain. I am the same except our causes are different.

      Until the cdc then the doctors change this nothing will be done. I asked my doctor when the cdc changes their position is this medical office going to change theirs? She told me No.
      She said we thought we were doing the right thing. We now have patients not addicted. I said I’m not addicted. I’ve stopped my pain meds in the past to see if I was. The only symptoms I had was pain. Nothing else. She then said you’re pain must be high. I said bingo!
      To me that means one thing. When I can not take it anymore, I have my plan. It’s not for everyone. But it is mine.

  • I am a big guy. Due to chronic poly neuropathy and other disabilities I cannot function without pain meds. Currently the clinic refuses to modify my meds to make it more effective. I have always had a high tolerance for opiates and that is a problem. I have also regained consciousness twice while undergoing surgery. Just a week ago I had out patient surgery on my prostate. The whole time the procedure was going on I was yelling out that I was in pain, I was being tortured, and I even tried to roll off the operating table just to help me get away from the doctor torturing me. I could not get off the table because my legs were in stirrups and that had me trapped. The doctor’s excuse is just that I am such a big guy. I do not buy that. They can always change the drug used or the dose to make it work.

    So, I am provided with low dose pain treatment even though I have a high tolerance and I’m a big guy. In other words, torture is an acceptable option in their eyes when pain meds are involved. This is unacceptable. I feel that my country is treating me like a second class citizen and preventing me from living a life of quality. The only option left for me is suicide. I do hope someone has another idea that is better. Thanks.

    • Any idea is better than the one you mentioned. Rarely do you hear a CPP being harmed from too high of a dose from opioid pain medications, but what we do hear often is the harm from too little. I’d look for another pain management doc who understands your problem and isn’t intimidate by CDC guidelines since the CDC recently made it clear not to use their STUPID guidelines as gospel.

    • I am in the same situation as you. I have also woke up during procedures or they could not even knock me out all the way once. I have quit using the hydrocodone many times only to be completely bedridden again. Tramadol does nothing. I cannot take any of the seizure meds for the neuropathy pain as they cause hallucinations, paranoia and other unlivable side effects. I am in chronic pain counseling again. I would suggest starting there. I also have charcot and had my foot, ankle and tendons wired, plated and fused.

      I understand the problems with addiction. I do not understand what the huge issue with hydrocodone though. You would overdose from the ibuprofen before the codone. Some days are ok and movement is possible with the meds. Other days I can take the max I am allowed with no relief. There is no point in taking more as it does nothing. I also never had a high from hydrocodone. I would prefer to no have to take it but I about ruptured my intestine because I did not want to get up to poop for 4 days.

      I understand where you are coming from. I admit to looking up to see if I can pursue Dr. assisted suicide. I looked up how to get heroin at one point because I wanted a break so bad from the pain but that was the sign it was time to get help. Every person I knew growing up that ended up using that are all passed.

      It is confusing. I have a wonderful family and awesome friends but there are times I really do not want to be here. I am in counseling trying to find a new way of thinking or coping everytime the lightning strikes or sledge hammer feelings hit and my vision turns to light. Weird I know. I have hit my head before and everything went black but maybe this is what people with migraines see.

      I bought Elton John tickets for the middle of 2020 and that is where I try to go now in my head when I need a distraction. I have never been to a concert and have always wanted to go. Also, my 8 year old is a music and theater lover (no clue where he got that from) and this would be a concert he will remember.

      Anyway, plan a trip (not a disney cruise as all that happiness was too much sometimes during an episode), seek counseling, you are worth it but you have to look out for you. My Dr’s are checking for cancer, arthritis, ms and other conditions as there is more to my issues than the neuropathy and charcot but I am fighting to find out more. I also became addicted to Fortnite as I have been bedridden for a year and a half and could not afford online schooling to better myself. It is also a great distraction and helps keep me sane.

      Things change. Sometimes second by second, hour by hour, week by week etc but changes will come. I know it seems like one step forward and 10 back sometimes but have someone you can talk to. If you wish to chat via email I am up for that. Sounds like we are on similar journeys.

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