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.

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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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  • Elderly patients who are home bound with severe illnesses and pain who are not terminally ill and who actually have doctors, nurses and therapists who see them in their own homes as they can only go to a doctor via ambulances still cannot have even the mildest of pain medications prescribed to them. They are left with only 2 options to get pain medications of any type…

    1. Go into a nursing home (even though many have loving families who want to care for them).

    2. Go on Hospice when you’re not terminally ill and they let you die of something easily treatable like a urinary tract infection.

    This is torture, murder and forced seizure of senior citizens’ assets and this government KNOWS it!!!

  • These doctors are cowards. They know their patients and still treat them like dogs. Any idiot with a diploma can put in the database of abusers and you have no ability to fight back. These rules are contrary to the US Constitution. All laws and rules that do not agree with the constitution are null and void. Or another way of looking at it is that you are denied due process and are not allowed to prove your innocence. It is unamerican and a bloody shame that it even exists. This whole system is communistic and they say welcome to the gulag. Get your lawyers. It is illegal discrimination and needs to be stopped.

  • I’ve written on this before.
    I want euthanasia for chronic pain. There comes a time with them reducing my pain medication to barely helping me. I used to be able to clean the kitchen with a break here or there. Or do my laundry.
    I am once again stuck in bed because my feet and body can’t stand or walk very far.

    So where is the quality of life?

    My state doesn’t allow death with dignity. I say those in chronic pain deserve way better.

    Cyndi

  • Hey, I’m in the same boat, since Chrysler 300 Rear ended at the red light my back have severe pain.

    Another mistake I gone for surgery which is failed since 2014.

    My life 24×7 on bed with pain like 10/10

    Could be suecide will be the solution for me.

  • I was a LPN 26 years im 47 and totally homebound due to my health I suffer from lupus RA fibro mast cell carcinoma Ehlers Daners 3 failed hip surgeries due to labral tears and also dissenigration now BOTH hips have labrum issues 4 surgeons have refused to help me ive been on the same dose of opiods 9 yrs now and now the DR took away 60 pills a mo so now even showering is an impossible task without those Its not just opiods ive lost due to the new laws I lost my xanex i had been on 9 yrs with no issues and there was no tapering they cut it off cold turkey I almost died they also took away my adderall so my disability advocacy and resource business I started 3 yrs ago and do all online is going to have to be shut down because I cant focus enough to work.Its very sad because in the 3 yrs ive ran my business I have helped 98 ppl in 27 states I was about to become a non profit. This has to stop innocent people are being tortured due to greed and stupidity from the government. The CDC and FDA even admitted they lied about the number of deaths related to prescribed opiods CPP jump thru more hoops than anyone to get our meds monthly drug screens pill counts monthly DR appts tons of documented proof of our issues as well as our compliance its so easy to fix all they have to do is make legit pain patients exepmt from these laws The government is commiting genecide to the most vulnerable ppl three are its time we put our foot down im looking for a lawyer willing to do a class action lawsuit on our behalf pls email me if your interested in joining this lawsuit or if you are a lawyer willing to take our case

  • I thank you for this format allowing my input! I am a 67 year old male. I’ve been prescribed tramadol for the past 20 years for degenerative disc disease. I am a victim of a flawed inspiration that says we can “get rid of the rats by burning down the barn.” As my medication has been reduced to a token trickle, I find myself an immobilized, potential recipient of the government dole. (welfare). Well beyond my grandstanding, I am seeking an answer for those of us who are denied life sustaining pharmacology in the name of political correctness.

    Best regards,

    John Kramer

    The Woodlands Texas

    281-732-4482

  • Thank you for your thoughts of compassion and understanding I am trying my best to keep on keeping on.

    I am trying to stay positive but all I read to so sad, I cry at my desk begging GOD to please help us all and let me wake up from this nightmare. I spend most nights 2:30am to 5:30am up worried about what I will become of me only taking 2/3rds of a dose that I have been taking for 15+ years. I just started to taper off and I know there will come a point where I will be back to the beginning of my nightmare 15 + years ago. My younger son has never had to take me to the bathroom because of my pain,my older son remembers when he had to do that quite often for me.

    It is embarrassing and makes me so so sad that he will see his dad like this, that is my future.

    Thank you for caring, Sean

    Sean Branigan

  • I had to change my Doctor after my PHARMACY said he is not a pain doctor. I have been seeing him for 15 years without ANY PROBLEMS. This is after I was with a pain doctor before him for 5 years.(My meds have only been increased 60 mg since I left my pain doctor 15 years ago) Now the new Doctor tells me I must cut my meds by 2/3 rds. I was in bed or couch 16 hours a day before I got my chronic pain treated.
    After I was treated for chronic pain with MRI’s and many many test and procedures. The doctor put me on Opioids , I was able to be a father again that was able to take my son to the park, pick him up from school, go to grocery. I was able to be a husband fix things again & make love to my wife.(SMILE) I know those things sound simple, but I am now I am being denied my meds and slowly on my way back to the couch& bedroom( My wife calls it the cave ) as my meds are taken away and I just stop doing everything that made me happy and watch my life just go away. I can not tell you how upset I am, it is sad that everybody thinks if you take OPIOIDS YOU ARE A DRUG ADDICT I am not a drug addict I am your neighbor,room parent, just another person trying to make it thru this thing called life, just like you.
    Now what little bit of life I did have is now been taken away. God please help people understand this is what these meds are for. I am at the end of my rope and we all need help from everyone that reads these testimonials of our lives. Thank you for your time, Sean

    • Sean, I am so sorry you too ate being left in agony. This is INHUMANE AND GENOCIDE! IM in many support groups and so many have ended thier lives to end the pain. I truly believe this was the corrupt lawmakers and thier sidekicks the DEA, CDC, FDA AND PROP intentions all along, to kill off as many disabled, chronically ill citizens and Vets as they can. They know dam well why the suicide deathrate is increasing at alarming rates. Many are from pain pts denied access to thier lifesaving pain medication! I am so outraged and have had it with being treated like a dam drug addict and criminal, being watched every move we make. God help us if we sneeze during a pm appt, we will be labeled with a substance use disorder, sniffling is a sign of withdrawal, smdfh. Its not only physically exhausting but mentally and emotionally as well and that alone drives thoughts of ending it myself. I wont harm myself as my kid needs me but I do be beg God to take me to end this torturous hell. Just know you are not alone.

      NATIONWIDE DONT PUNISH PAIN RALLIES IN EVERY STATE SEPT 18TH!!!! SPREAD THE WORD WE NEED THOUSANDS TO SHOW IN EVERY STATE!!!!! FOLLOW THE LINK IT WILL BRING YOU TO YOUR STATE PAGE.

      #SILENTNOMORE #STANDUPSPEAKUP #OPIOIDHYSTERIA #DontPunishPain

    • Thank you for your thoughts of compassion and understanding I am trying my best to keep on keeping on.
      I am trying to stay positive but all I read to so sad, I cry at my desk begging GOD to please help us all and let me wake up from this nightmare. I spend most nights 2:30am to 5:30am up worried about what I will become of me only taking 2/3rds of a dose that I have been taking for 15+ years. I just started to taper off and I know there will come a point where I will be back to the beginning of my nightmare 15 + years ago. My younger son has never had to take me to the bathroom because of my pain,my older son remembers when he had to do that quite often for me.

      It is embarrassing and makes me so so sad that he will see his dad like this, that is my future.

      Thank you for caring, Sean

      Sean Branigan

    • Thank you Pam for your thoughts of compassion and understanding I am trying my best to keep on keeping on.
      I am trying to stay positive but all I read to so sad, I cry at my desk begging GOD to please help us all and let me wake up from this nightmare. I spend most nights 2:30am to 5:30am up worried about what I will become of me only taking 2/3rds of a dose that I have been taking for 15+ years. I just started to taper off and I know there will come a point where I will be back to the beginning of my nightmare 15 + years ago. My younger son has never had to take me to the bathroom because of my pain,my older son remembers when he had to do that quite often for me.

      It is embarrassing and makes me so so sad that he will see his dad like this, that is my future.

      Thank you for caring, Sean

      Sean Branigan

    • I am so sorry for the government mistreatment of good outstanding Americans. It’s not cronic pain patients chose to be in unbearably pain. I read an article last night of so many cronic pain patients committing suicide because they can not get the medication needed. Like you these were wonderful human beings that deserve the benefit of this medication. Why the CDC has chosen to eliminate you outstanding individuals is beyond my ability to understand. May our kind and loving God soften the hearts of these individuals with their rediculus regulations. If those individuals who have attacted you had to spend 1 day in your shoes they couldn’t survive. I feel so sad for all cronic pain patients.

  • I know what you mean. I’ve had 7 back surgeries to try to make it better because i cant get the pain meds I need. I saw a commercial on TV they were advertising a guy that climbed under his car and kicked the jack out so he could get pain meds. If that’s not the biggest propaganda I’ve ever seen. I worked hard for 40 years and was still working when they cut me off. I had to go to rehab for 30 days and stayed off of them for a year before i finally found another dr to prescribe them to me but now i only get half of what i used to get. I cant sleep, I cant sit at the table to eat, i cant ride in a car and I don’t drive. I eat, sleep and spend my day in my recliner. When they cut me off I gave up a 6 figure income and a job i had for 25 years and now i’m on disability. Every day sucks! Why cant they figure out some other way maybe a lie detector test or something. After working for 40 years and never failed a drug test should count for something. I’ve been on opiates for over 20 years and i’m not dead yet. Who cares if drug addicts die it sure is better for me. I cant help it if they want to take 10 at one time hell if you take 10 of your blood pressure pills you’d probably die then to. Their problem shouldn’t be my problem and if they want to kill themselves I don’t care. I would rather not say what I think of the DEA and all the people involved in this stupid decision to make senior citizens suffer!

    • Hi Fritz, I rarely post messages on website, but wanted to tell you that I am in a less intense but similar situation. I was in a car accident, and suffered with awful pain on right side of my body for several years. I tore my rotator cuff while caring for my elderly mother and that forced me to go to a Dr. Lucky for me, the dr offered percocet. It was amazing how it helped me heal my shoulder myself with no surgery, but also gave me a new outlook on life because it took so much of the car accident pain away. When I explained this to my Doc, he contented to give me rx for 5 mg /day for several years. I moved to another state, and luckily found a PA who helped me. With the pain almost gone (never took so much to make it go away altogether as that makes me sleepy) i began exercising again, found a new job and began to rebuild my life. Now, my PA wants me to go to pain dr and get shots and take other anti depressant drugs. I am petrified, as these options seem much more complicated, more invasive and more side effects than the opiate. the opiate gives me no side effects, except maybe a little slower digestive issues, but easily fixed with magnesium supplement. The more research I do, the shadier it seems. There is little transparency, the PROP people are financially linked to rehab centers and one is a consultant for a law firm that has interests in areas that are definitely conflicts of interest. I question how they have such sway over the CDC and why a few people with special agendas, who seem to be at best fringe busy bodies who would like to start a new prohibition era for opiates and anxiety and anti-depressants. If only there was a way for responsible chronic pain users to find someone who has some clout to help us be heard. It seems that this strange new campaign against the safest, least expensive pain med needs to e investigated. Opiates have side effects but honestly the list is less than for steroid shots, neuron tin, creepy ssri drugs etc. Looking at articles in medical journals tell a different story than the one the prop dr.’s and the news are selling. I wonder who stands to make money when pain patients are forced into other areas, or even suicide. I worry the most for veterans and elderly, for people who will lose their jobs, for parents who must be able to care for family. Why can’t we be allowed to grow a poppy or two for personal use even? It is just shocking how unfair and draconian this is, and why there is so little push against it. Where are the journalists, the professionals who know that opiates are not abused by long term chronic pain patients. Would we take drivers licenses away from everyone because there are drunk drivers? Its exaggerated but the logic is the same! It’s ok to sell horrendous toxic weed killers to anyone, but we can’t allow a dr. to prescribe a wee studied inexpensive medicine to functioning adults who have proven that they are responsible? I do not recognize my country sometimes. The drug cartels are most likely rejoicing over this stupid faux outrage. I am worried for you, and I hope you somehow find a dr to help you. Let’s hope there are some brave medical professionals who will speak up against the illogical and tyrannical rantings of the prop crowd. I send you best wishes, and please do not give up. I am sure there are people who will benefit from knowing you. Bless you.

    • Fritz, You say your doc is only giving you half of what you used to take? What is you sat down with him and fully explained what you just told us or even show him this. We have a right to have our pain treated adequately and you need to very kindly convey this to him. Reason with him about how responsible you are and refer to “the war on pain patients and the resulting suicides”. You could even start by sending a hand written letter explaining all this and thanking him for being your doc and taking the time to read the letter. Always show respect! It will go a long way in keeping the doc calm. If he gets worked up, slow your speech and insist that this is the level that allows you to function like a normal human being. Make sure you put (personal) next to the doctor’s name. That way he will open it and not someone else. I too switched doctors and was terrified when the new one was not keen on opiates. But I was able to get a nurse who attended to me in my home to explain to the doc how the meds helped me have somewhat of a life. You also may want to ask the doctor if you could have an assessment by a visiting nurse. I had complained to my previous doctor (actually a P.A.) that my pains were so bad I could not hardly bathe myself or get out of bed. So she ordered the home nurse assessment and they sent physical therapists and a hospice/palliative nurse was assigned to manage my pain. She was appalled at my level of suffering (I’m crippled from scoliosis) and said I needed an increase in my meds. She had to really fight to get this for me. But she was able to convince that P.A. that I needed them, and what a difference it made. I am now doing more even though my pain is still great, I am getting so much more done. So maybe if you ask to have a nurse come to your home to asses your pain levels that may be what you need to persuade your doctor.But keep in mind there are a few nurses who are against them. Just ask that you get one who works as a palliative/hospice nurse and they will be more compassionate. Just don’t give up! The “squeaky wheel get’s the grease”!

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