Living on False Hope

By Carol Levy, PNN Columnist

I live on false hope. I think hope is what keeps many of us afloat. And when the medical community tells you, “I have nothing left to offer you,” false hope is all there is.

And then I open my email, and there is a story in KevinMD, a medical site that I trust. It’s about using ultrasound as a treatment for pain. My heart soars with anticipation. Maybe, maybe this time, the answer has arrived.

The headline, “Ultrasound shows promise as new pain treatment, targeting a specific brain region,” sets off a specific area of my brain. I feel the false hope lifting and true hope taking its place.

And then I read the article.

Just like too many other studies I have read, this is not research that can be applicable to many people. The researchers only used a sample population of 23 people. That is just too small a number to extrapolate out to the larger pain community.

I have had many brain surgeries for my trigeminal neuralgia, so I'm not put off by a treatment that targets the brain. But the author of the article wonders if stimulating areas of the brain with ultrasound could be used for nefarious purposes, such as torture. 

I was going to do research to see what other new ideas and treatments are out there. Then I realized I didn’t really want to know, because most of the research doesn’t pan out or involves too few people to take it seriously.

I want to read about research involving enough participants that there is real hope in what they found. A study that uses a large number of people and with results so positive that it may be a realistic treatment option.

So far, I haven’t seen that. I know the pharmaceutical industry is working on non-opioid pain relievers, but I think the better way to go would be to find something that minimizes our pain. I'm afraid there may be no way to ever truly eradicate many painful conditions. 

Until I find a study involving hundreds or thousands of participants using a new pain treatment that actually works, is affordable, and has few side effects, I suppose false hope is better than none. 

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here. 

Pain Care Should Be Individualized, Without Interference from Others

By Barby Ingle, PNN Columnist 

Trigeminal neuralgia, arachnoiditis, Ehlers Danlos syndrome and Complex Regional Pain Syndrome (CRPS) have all been called the “suicide disease” – the worst pain possible. But saying which disease or condition causes the most pain is subjective because people experience pain differently.  

• According to U.S. News & World Report, passing a kidney stone is one of the most painful medical conditions you can have.  

• News Medical Life Sciences lists sickle cell disease as one of the 20 most painful chronic conditions, with episodes of pain occurring when sickle-shaped red blood cells block small blood vessels.  

• McGill University in Canada has a “pain index” based on a questionnaire that asks people to describe what kind of pain they experience. The index consistently lists CRPS as the worst known pain to humans.

• Verywell Health reports that fibromyalgia is one of the most common pain conditions, affecting 10 million people in the U.S. and causing widespread body pain, sleep problems, fatigue and distress.  

After living with multiple pain conditions for over 20 years and speaking with tens of thousands of other patients, I no longer believe it matters which type of pain a person has or who has the most pain. We all experience pain. How much pain we feel depends on the individual and a host of other factors, such as genetics, life experiences, and whether effective treatment is available and affordable. That is what matters.

When we do not manage pain effectively, suicides go up. We also see drug abuse and misuse rise. According to a report by the National Institute on Drug Abuse, about 5% to 7% of drug overdose deaths in the U.S. are intentional suicides. Many of those deaths are pain patients.

Since 2011, we have seen a steady decrease in opioid prescribing. Be it acute or chronic, providers are weary of prescribing opioids for pain. It’s not because opioids don’t work. More often than not, the reason they stop prescribing is because they have invested so much into becoming a provider (education, cost, time, family and social connections) that they are now at risk of losing due to laws and medical guidelines based on misleading information about opioids. 

We need to get away from the generalities of treating pain and into individualized patient care. It may or may not involve pain medication, surgery, implants, cognitive therapy and other treatments. For those who have the audacity to say that anyone else should remain in pain because you are not comfortable with their form of treatment -- shame on you.

I have chosen not to use opioids for over 10 years because I have other options that work for me. I want all people to get whatever treatment they need to control their pain. It will be different for each of us and whatever condition or comorbidities we live with. We all need and deserve to get the care we choose after careful consideration, research and discussions with our providers. Laws and guidelines should not be used to take away medications that have been available since the beginning of time.

At a recent pain education event I attended, I heard the argument that there were no long-term studies on the use of opioids for pain. But there are millions of patients who have taken opioids safely for years who will tell you otherwise. Opioids actually gave them more life, because they were able to work, exercise and function when their pain was properly managed.

As a pain patient myself, I want the freedom to do what is best for me. I am currently working on getting access to ketamine infusions again after my ketamine clinic closed down. I want that same right in selecting treatment to be available to others. It should be left to patients and their providers to decide on treatment, without interference from others.

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts. You can follow her at www.barbyingle.com.   

Take Our Survey About Hospital Pain Treatment

By Pat Anson, Editor

Over the last few months, we’ve received hundreds of reader comments about the poor quality of their pain care in hospitals and emergency rooms. Many said they their pain was not treated or undertreated, while others said they were misdiagnosed or labelled as addicts if they asked for pain medication.

In an effort to keep the dialogue going and see just how common these problems are, Pain News Network and the International Pain Foundation (IPain) are conducting a survey of pain sufferers about their treatment in hospitals. The survey, which you can take by clicking here, should only take a few minutes to complete.

One reason we’re doing the survey is because a group of U.S. senators recently proposed that Medicare no longer require hospitals to ask patients about the quality of their pain care. The senators believe questioning patients about their pain leads to over-prescribing "because physicians may feel compelled to prescribe opioid pain relievers" to improve their hospital's ranking in patient satisfaction surveys.

“Why would we want to reduce pain care or stop asking about a person’s comfort and pain levels?” asked Barby Ingle, president of IPain, who knows from experience what it’s like to go untreated or undertreated in a hospital. Barby recently wrote a column about ways to make your hospital stay easier.

“The International Pain Foundation has been hearing increasing stories of undertreated pain care in ER and hospital settings over the past few years,” she said. “With such a large outcry from pain patients across the country saying ‘don’t go the hospital for pain, they don’t know how to treat pain,’ we know there is a problem. How can it be addressed? Surveying the pain community will help put a spotlight on this issue and show lawmakers, providers, insurance companies, and the pain community that we need more focus on our pain care needs, not less.”

A recent development that will affect future pain care in hospitals is the release of new guidelines for post-surgical pain management. The American Pain Society is encouraging physicians to use opioids alongside “multimodal therapies” such as acetaminophen, non-steroidal anti-inflammatory drugs (NSAIDs), Lyrica, Neurontin, and cognitive behavioral therapy to treat patients in post-operative pain.

“Cognitive behavioral therapy? Really? So you cut into my nerves and tissue and muscles for 6 hours, and the pain is all in my head?” is what Janet Lynn wrote about that idea.

“So when the NSAIDs shut down a person’s kidneys or cause massive stomach irritation and bleeding is it time to give a patient a narcotic pain med?” asked Sharon Storck

Even doctors aren’t immune from poor treatment in hospitals. Family practice physician Lisa Kehrberg, who has severe abdominal pain from visceral neuropathy, recently wrote about one of her experiences in a hospital (see “My Journey From Doctor to Chronic Pain Patient”)

“The first surprise was, after admission, they refused to treat my excruciating pain. I was doubled over, rocking, vomiting, and crying with the worst pain of my life. Worse than labor, appendicitis, or anything else I'd experienced,” wrote Dr. Kerhberg. “Doctor after doctor walked in and witnessed this and continued to refuse ordering opioids. After all the tests were complete and normal, the doctors were very rude to me and implied this was all a psychological problem.”

Has this ever happened to you? Are you satisfied with the quality of your pain care in hospitals? Take our survey and let us know, by clicking here.