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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

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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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  • I’m scared for all us chronic pain surfers. Have a hard of anofe time,trying to live a basic life.Im afraid I won’t be able to Handel all the pain on my own. 😟😓 crohns, RA,Fibro,spinalstunsis.

  • I know I’ve posted before when this first came out. But things keep changing for the worst, on my side and the cdc and doctor side.
    I have symptomatic Tarlov Cysts. 5 of them in 2013 that I had microneurosurgery on.

    My pain has been coming back slowly in my sacrum and coccyx area, the same area I had surgery on. I can’t sit or lay on hard surfaces. To get another mri done I would need to be knocked out. The hospital and doctor has refused that request. They first reduced my pain medication 2 years ago and more times again. My old dr left and the one taking his place looked at my chart and said “no way” am I going to allow this medication, you must come down to 90 of morphine. It’s impossible. My pain right now is Not controlled.
    My feet at doing something I can not explain but basically they are remolding them selfs. My foot arch is going higher, my big toe stays swollen and I can’t move it much but it is sticking upward. Does it cause pain? YES. On top of my sacrum pain and the neuropathy in my feet and calves. Everything I’ve read they are going to as of 1/1/2019 take even more away from us. It seems to me that our government is throwing us away, expecting us to die off so they don’t have to care for us. What happened to making America great? And We the people. I don’t feel welcome in the country I was born in.

  • I have Fibromyalgia, I am in Chonic Pain, my whole torso and hips 24 hours. On a scale of 1 to 10, my pain is a 200!!. Hydrocodone is the ONLY thing that works for you. I am having a hard time finding a doctor due to these new rules & patient contracts! But the doctor gave me BELUCA 450 Mg twice a day that did not do anything for my pain Nor did Gabapentin, 900Mg a day. HELP, I NEED OUT OF THIS PAIN !!

  • 5 weeks ago I detoxed myself. OxyContin 10mg twice daily with oxycodone 10mg 4 times. I just got fed up with PM. At 70, it could have gone worse I guess. First week was very bad. Yesterday I went to gastroenterologist because I’m constantly nauseous still. On way home, I vomited all over my car and my clothes. Nothing but bile. My primary is a PA and has been my only support, but I didn’t tell her until the damn IBS came back. Now I have anti nausea, clonopin for insomnia (constant, pills or not) and clonidine. I can’t keep holistic stuff down. I have L5/S1 on top of each other with slippage to left. T12 and 14 slipped out too. Arthritis with sciatica. Both knees arthritis. Orthopedic refused to help me because he says the withdrawal is exacerbating the pain WTF, the pain is what it was before I began pills six years ago. It’s worse and confirmed by MRI. I HATE doctors. I have had bad luck with surgeries that went wrong. I much prefer the PAs who are more thorough and empathetic.
    I felt I had to do this because the government is going to stop meds for chronic care patients. I was sick to death of all the visits, urine tests, pharmacies that conveniently had no pills. I am DONE. I’d prefer Medicare send me cyanide. They won’t cover acupuncture, massage, or chiro, which my previous insurance did. We are being sent the message to do them a favor and drop dead. When I’m well enough to get angrier I’m going to do what I can for those suffering worse. I live close to Washington DC.
    BTW, no area hospitals would detox me.
    I am so sorry some people voted for these monsters and morons. The future? God only knows.

  • I’m re-reading these comments to see if anyone shared any kind of hope and/or marches. We just do not deserve to be relegated into a lifelong prison of pain.

    I have never once heard anyone say anything but there’s an opioid addiction crisis (fake). I never have believed numbers that come out of Washington. It amazes me when all these talking heads pull numbers out of where the sun doesn’t shine. What is the alternative? Nothing? Every time I go to pain mgmt I wait for the dreaded new rules. In fact last time I went they said no more benzos. If I can’t fall asleep within minutes of laying down forget it. I have to stay up and hope melatonin will do it as my body cannot take full contact. Thankfully there are other effective alternatives but that info was withheld from me. I think she was looking for a severe reaction to note so she can build a case against me to fire me. I’ve learned to not react to anything anymore than a disappointment.

    Since I take sleep meds & go to pain mgmt that means my real doctor wants to see me qtrly so that’s a total of 16 visits a year, 16 drug tests and more and more money. It’s ridiculous especially knowing all they do is write Rx’s. That’s it. No corruption here. I did fine for years going to my doctor once a year. 90 day fills and refills. I’ve never ever overdone it. I always ended up with extras. For this very reason if nothing else.

    My real doctor said if I hit a wall with p.m. to think about marijuana. Then someone told me about CBD oil derived from marijuana (THC free-pain med only). I’m passing that along in the hopes that someone can be helped by it. I have a link. If it doesn’t work just do a search.

    https://www.medicalmarijuanainc.com/what-is-cbd-hemp-oil/

    God bless you all and please try to hang in there. Your family and friends love you.

    My sister and I lost our mother at 2 & 3 to suicide. She had Polio and just wanted out. I miss having a mother that I know would love us more than the replacement we got.

    Please please look for alternatives right now since they want to cut us off of opiates totally. Maybe you can fire them.

    • Wow Joni, your story is so similar to mine! I posted my story right before the DPPRALLY2018 so it’ll be found under older comments. Long story short; my chronic pain was 70%-80% relieved back when I was prescribed 8mg Dilaudid 300/month = 10/day & never ever once did I run out early. My p.m. Dr. trusted me. He also had me on a decent amount of Klonopin to counter my crazy-ass anxiety due to being disabled at such a young age & so limited in what I can & can’t do (mostly can’t). Nowadays after being “CDC-Trumped” I’ve been tapered down to only 8mg Dilaudid 90/month = 3/day which only relieves my pain by only about 5%! And the Klonopin reduced to 1 .5mg/day = 1/2 pill a.m. & 1/2 pill p.m.! My insomnia is wicked crazy too & use Vistaril & alot of Melatonin which barely works. I mean it’s 4:30am now & been up since just after midnight & this is normal for me. I’d also like to hear something positive from the rallies & petitions but haven’t heard squat! WHAT was the point? Can’t fight big brother. I too lost a family member to suicide because she had petit mal seizures & couldn’t find relief. She was 19 years old! Anyway, guess I’ll shut up now. Just wanted to say ‘hey’ & pray that our dilemmas will eventually get their justice.
      ~May Peace be with you ✌

  • Thank you for being the voice for the many of us who live in fear that we’ll lose the small amount of opioids we’re prescribed. Mine were cut in HALF 3 years ago.
    God bless you, kind sir.

  • Patients with conditions as chronic such as degenerative disc disease from diseases such as guttate psoarisis and many other chronic inflamatory conditions should not be persecuted if using opiods as prescribed by a M.D. Its sad that the governments lawsuits are going to affect the lives of many people in chronic pain. Its a big money grab for government from pharmaceutical industry and will hurt the patient two fold in the pocket and keeping them in pain.

  • I’m 70 (F) with arthritis both knees, spondylitisthe L1/S2 and compression at T12 & 14. Pain M put me on OxyContin and oxycodone 2012. They committed Medicare Fraud & closed after doc killed himself in office. New PM said they’d wean me off b/c I’m not really in pain. Chronic pain doesn’t respond. At least I could walk more than 5 min. Five weeks ago I went cold turkey. No hosp would detox Medicare patient. You don’t want to know what I’ve gone through. Can’t take NSAID – bleeding ulcers or Tylenol – liver probs. May I ask the government for cyanide pills? No Medicare coverage for massage, acupuncture, or chiropractor which I did before. Receive Medicare & die. Orthopedic “I won’t treat you until you are way past withdrawal which is causing most of your pain”. I cried for hours and, big baby me, wanted my mother who died in 2005. No one knows our pain. I hope Sessions has pain & no help. Also, none of docs approve of medical marijuana. PM said if it shows in urine, we kick you out. Well, now I don’t need them.

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