For some pain patients, life without opioids is torture

For some chronic pain patients, life without opioids is torture

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: 

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.

I have seen how difficult it is for people living away from big cities to control their chronic pain.

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

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.

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

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.

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 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.

Categorizing and treating all chronic pain patients as opioid addicts is not only cruel but foolish.

Our government will soon be spending billions on the Precision Medicine Initiative to find and treat patients as genetic individuals because this makes treatments so much more effective.

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.

Even with the minimal opioids I take, I still have pain all the time, 24 hours a day; without opioids, life would be torture.

Alison Moore, RN, lives in Spring Grove, Pennsylvania.

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6 thoughts on “For some pain patients, life without opioids is torture

  1. dave

    Its certainly cruel and degrading and unjustifiable for providers to discontinue opioids for people in pain.And for providers to use the Nuremberg defense is unjustifiable and cruel. The soft moral underbelly of pain care has been exposed and we see how immoral govt and providers can be.
    But like i have said or the last 4 ears its really now up to people in pain and those who genuinely care about them to reverse the moral wasteland that pain care has become.

    Liked by 1 person

    Reply
  2. dave

    Yes everywhere the ceremony of innocence is drowned the rough beast of pain care is slouching and the falconer can no longer hear the falcon…. I can only think of dystopias like Brave New World, 1984, or We when i think of pain care in America.

    Like

    Reply
  3. Pingback: Patient contracts and a lawyer’s advice to doctors on managing pain patients – All Things Chronic

  4. Candi Simonis

    100 million Americans have one or more chronic incurable pain Disease. As the CDC, DEA, FDA, Medicaid and Medicare, and numerous other government agencies, are blaming Doctors for the over prescribing of opioid medication. NOBODY, is looking at or reading the statistics from chronic pain disease patients. How about NOT addressing these drugs as dangerous and addictive. When all else fails: physical therapy, excersize, over the counter medications and numerous injections etc, we chronic pain disease patients, are left with one option to help us cope, opioid pain medication. Lets address this medication as lifesaving and medically necessary for the million of Americans with chronic diseases. Chronic pain is a disease. Chronic pain disease patients are now the epidemic. The addiction rate of chronic pain disease patients is .02-.6 %. We do not misuse or abuse our medications.
    No other disease medication is scrutinized. We, as patients, are being denied, dismissed, overlooked and discriminated against, by our physicians, due to all the scrutiny associated with treating chronic pain disease with opioid medications. Our Dr’s are afraid to treat us humanely and adequately. We have a disease that medication is readily accessible to us and we are being denied. We, pain patients, are being discriminated against, due to people who abuse illegal heroin, illegal fentanyl and/or misuse opioid medication and place the blame on everyone but themselves. This is a direct hunt for Doctors who prescribe life saving medication, for pain disease patients, that benefit from them. We no longer are able to have doctor/patient confidentiality. We now have insurance agencies, pharmacists, and other government agencies in our physicians offices. Monitoring and policing our physicians.
    We have a chronic disease. We want to be able to take care of our homes, our children, our selves, as much as possible, but without access to these life saving medications, we are unable to do so. We want to live, not just exist in pain 24/7.
    We need the government agencies to look at the real statistics, not the hand picked. These agencies are not physicians. They are trying to doctor us, patients, without a medical license. They are also trying to police our physicians. This is a war on a disease, medications, physicians and patients.
    The statistics do not differentiate what opioid drug attribute to a fatal overdose or misuse of medication. Was is an illegal drug, heroin, illegal fentynal, carfentynal, was that person’s legitimate medication? All these questions need answers. The information needs to be addressed.
    We need help. All the headlines, topics and stories on how opioids are bad and how people are abusing, misusing, overdosing, becoming addicted or dying from them. We need to look at the good they do and how they help our disease of chronic pain and the million of Americans who use them for some relief.
    The government needs to put the focus on illegal drugs coming into, being manufactured and distributed in this country, illegal fentanyl, illegal heroin, methamphetamine, cocaine and all other ILLEGAL DRUGS. People who abuse and misuse medication or illegal drugs will always find a way to get them illegally. Put the focus on that. Not the legally and medically necessary medications we patients need.

    Liked by 1 person

    Reply
    1. Zyp Czyk Post author

      It’s clear that you understand exactly what’s at stake for us.

      I’m sure your writing would make an impression on any public official/representative you could send it to.

      Like

      Reply

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