5 Million U.S. Cancer Survivors Live with Chronic Pain

By Pat Anson, PNN Editor

Over five million cancer survivors in the United States live with chronic pain, a fast-growing population that is expected to double by 2040 due to the aging of the population, early cancer detection and advances in treatment, according to a new study by the American Cancer Society.

Chronic pain is one of the most common side effects of chemotherapy and other forms of cancer treatment, but until now there has been little information on its prevalence among cancer survivors.

Researchers looked at data from the National Health Interview Survey from 2016-2017 and found that about a third of cancer survivors (34.6%) have chronic pain. About one in six (16.1%) have “high impact” chronic pain (HICP) – defined as pain that limits life or work activities on most days.

Based on that survey data, researchers estimate the total number of cancers survivors in the U.S. at 15.5 million. About 5.39 million of them have chronic pain and 2.51 million have high impact chronic pain.

“We found the prevalence of chronic pain and HICP among cancer survivors to be almost double that in the general U.S. population. Chronic pain and HICP were more prevalent in survivors who were unemployed and who had low socioeconomic status, inadequate insurance, and had some specific types of cancer,” researchers reported in JAMA Oncology.

“The patterns of chronic pain that we observed in cancer survivors may be explained by barriers to cancer care and pain management as well as by the type and extent of cancer treatment received.”

One barrier to pain management stems from efforts to rein in opioid prescribing to prevent abuse and addiction. While the 2016 CDC opioid guideline is intended for “noncancer” patients, it is also applies to patients “who have completed cancer treatment, are in clinical remission, and are under cancer surveillance only.”

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Two experts in oncology and palliative care at the University of Pennsylvania say the CDC’s inclusion of cancer survivors was a mistake because it is not uncommon for cancer pain to persist long after a cancer is treated.  

“Unfortunately, this arbitrary distinction is not consistent with the evidence of pain trajectory in cancer survivors,” Neha Vapiwala, MD, and Salimah Meghani, PhD, wrote in an op/ed also published in JAMA Oncology. “Similar levels of pain were reported in survivors who were still receiving cancer treatment and those who had completed active cancer treatment.”

It’s not uncommon for cancer patients undergoing active treatment to be denied pain medication. Many doctors are reluctant to prescribe opioids, regardless of the diagnosis.

“My cancer doctor will no longer prescribe pain meds for me because I now see a pain doctor. The pain doctor doesn't understand the new cancer drug I'm on and that the side effects of this drug are pain, so he is very reluctant to manage my cancer pain,” a patient with lymphoma told us. “Many days I wonder if it would just be better to let the cancer take its course than to be scrutinized and treated like a criminal.”

April Doyle is being treated for Stage 4 terminal breast cancer, but a Rite Aid pharmacist refused to fill her prescription for Norco because he was worried about being fined or even losing his job. April’s video about the experience went viral.

“I have to take 20 pills a day just to stay alive,” she explains in the video. “Every time I take my pain pill prescription there, they give me the runaround. They don’t have enough in stock or they need me to come back tomorrow because they can’t fill it today. Or something stupid. It’s always something and it’s always some stupid excuse.”

The American Cancer Society study found that chronic pain was most common among cancer survivors treated for bone, kidney, throat-pharynx and uterine cancers.  About half still had pain after their cancer treatment ended.

Kratom Gave Me Hope

By Dijon Evans, Guest Columnist

I have taken kratom for 2 years now. I was cut off of my pain meds, after 40 years of proper and adhered to treatment.

There was no taper. No discussion. No warning. My pain management doctors just stopped treating all chronic pain patients and, shortly after, all of their terminal cancer patients.

I have full body Complex Regional Pain Syndrome (CRPS), osteomyelitis, osteoporosis, neuropathy, sepsis, and two pulmonary embolisms.  I’ve had 3 amputations and have an artificial hip. My other hip needs replacement, as does my only knee. My spinal vertebrae are either broken, fractured or collapsed.

I've been having my jawbones ground on, drilled into and screwed together, all with no pain medication because of the panic caused by the CDC guideline, DEA enforcement and imprisonment of doctors.

Two years ago, I was leaving my home (after being bedridden for over 10 years) and asked for help getting into my wheelchair. I was on my way out the door to end my own life.

After being abandoned by the medical profession and my government, I lost all hope. I had no quality of life. And I sure as hell wasn't going to be tortured.

That's when I took my first bit of kratom. When my care provider, my boyfriend, showed up later that day, we both cried. He knelt beside me as I was sitting on the couch. Not in bed. Not begging for mercy. But sitting on the couch, smiling.

Yes, I am still terminal. Yes, I have bad days and flare ups. My doctors know I take kratom, follow me and cannot believe that when they see me, for the most part, I am smiling. I push my own wheelchair into my appointments.

DIJON EVANS

DIJON EVANS

I have blood work each month. No, I am not cured. But I now have hope.

My daughter and grandkids are happy to see me, not dreading it. I'm not in the hospital or ER as much. I have a little bit of quality of life -- while I can.

Is this really too much to ask?

I've done my research. I am educated. I'm an intelligent person. A grandma, a daughter, sister, niece, cousin, a mother, a significant person in several lives. I am important. I do matter.

I don't use much kratom, but if I was asked to change the amount and manner and participate in a clinical trial, I would gladly do so in order for the millions who may benefit and have benefited from it.

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Dijon Evans lives in California.

Do you have a story you want to share on PNN? Send it to: editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Cancer Patient's Rite Aid Video Goes Viral   

By Pat Anson, PNN Editor

April Doyle was frustrated and angry when she left a Rite Aid pharmacy Monday in her hometown of Visalia, California. A pharmacist there had once again refused to fill her prescription for opioid pain medication, so she got into her car and tearfully recorded a video that she uploaded to Twitter.

“I’m frustrated and that’s why I’m crying,” Doyle said, looking into her cell phone camera. “I’ve had a hard time getting my pain pills filled from them.”

Doyle’s story is a familiar one to millions of pain sufferers, who often have trouble getting their opioid prescriptions filled at pharmacies across the country. But her story is a bit different. The 40-year old single mom has Stage 4 terminal breast cancer that has metastasized into her lungs, spine and hip.  Doyle’s oncologist wrote a prescription for Norco — an opioid medication — to relieve some of her pain.  

“And when you have metastatic cancer in your bones, you need it.  Because sometimes the pain is so much you can’t even function. And I just want to function. I want to be able to go to work and I want to be able to sleep. And I want to be able to do things with my child.  I just want it not to hurt all the time,” Doyle said.

Within days, Doyle’s 6-minute video would go viral on Twitter and Facebook, where it’s been viewed over 200,000 times.  She’d also get apologies from a Rite Aid vice-president, the store manager and the pharmacist who refused to fill her prescription.

Doyle was no stranger at that Rite Aid store. It’s right around the corner from her house and she’s been shopping there for 20 years. It’s where she’s been getting her prescriptions filled for chemotherapy, anti-depressants and anti-nausea drugs — all written by her oncologist. But Rite Aid always seemed to have trouble filling that prescription for Norco. 

“I have to take 20 pills a day just to stay alive,” Doyle explains in the video. “Every time I take my pain pill prescription there, they give me the runaround. They don’t have enough in stock or they need me to come back tomorrow because they can’t fill it today. Or something stupid. It’s always something and it’s always some stupid excuse.”

Federal and state prescribing guidelines – and those of insurers – specifically exempt cancer pain from restrictions on opioid medication.  But some cancer patients still get turned away at pharmacies. According to Doyle, the Rite Aid pharmacist told her he was worried about being fined or even losing his job if he filled her opioid prescription.   

Some of that caution is understandable. Rite Aid and other major pharmacy chains were recently added as defendants in opioid lawsuits filed by the firm of Simmons Hanly Conroy. In the current climate of opioid hysteria and litigation, every step of the drug supply chain, from manufacturers to wholesalers to retailers is under scrutiny. Billions of dollars are at stake. Caught in the middle are pharmacists and patients like April Doyle.

“It’s not right. I’m not a criminal. I’m not a drug addict. I don’t even take them as often as my doctor says to take them. It’s not fair,” she said.

Astonished at Reaction

Doyle has been shocked at the response her video has gotten from the pain community. And surprised at how common her story is. Hundred of people left comments on Doyle’s Facebook page after watching her video.

“Stop giving your money to Rite Aid! You deserve dignity and great customer service,” one supporter wrote. “This whole opioid epidemic is making it impossible for those who medically need the meds. We all have our own story to share. This has to stop!”

“It’s hard to be sick and have people who don’t understand what you’re going through judge you,” said another supporter. “I hope you can find a pharmacy that will treat you with dignity and the compassion you deserve.”

“I know this oh too well trying to get my mom’s scripts filled when she was battling cancer running from store to store feeling and looking like a junkie. It was the most horrible part of it all!”  said another.

 “It’s astonishing the reaction it has gotten. I had no idea this was so common. It’s actually kind of sad how common it is,” Doyle told PNN. “It really struck a nerve with what’s apparently a big problem. I’m just dumbfounded by it.”

A Rite Aid spokesman said he could not comment on Doyle’s case.

“At Rite Aid, we are committed to providing high-quality care to all of our customers and patients. Rite Aid is not able to provide additional detail due to patient privacy,” Chris Savarese, Rite Aid Director of Public Relations said in an email.

Although the company has apologized to Doyle, she does not intend to go back to her neighborhood Rite Aid.

“I have decided to find a locally owned mom and pop pharmacy that really wants the business,” she said.

CDC: Guideline ‘Not Intended to Deny Any Patients Opioid Therapy’

By Pat Anson, PNN Editor

A top official with the Centers for Disease Control and Prevention says the agency’s controversial opioid guideline was never intended to deny prescription opioids to chronic pain patients.

Deborah Dowell, MD, is one of the co-authors of the 2016 guideline and the chief medical officer for the CDC’s National Center for Injury Prevention and Control. In a February 28th letter made public this week, Dowell attempted to dispel the widespread belief that the guideline is a mandatory policy for all pain patients.  

“The Guideline is not intended to deny any patients who suffer with chronic pain from opioid therapy as an option for pain management. Rather, the Guideline is intended to ensure that clinicians and patients consider all safe and effective treatment options for payments,” Dowell wrote. “CDC encourages physicians to continue to use their clinical judgement and base treatment on what they know about their patients, including the use of opioids if determined to be the best course of treatment.”

Dowell’s letter was addressed to three medical associations – the American Society of Clinical Oncology (ASCO), American Society of Hematology (ASH) and the National Comprehensive Cancer Network – which were concerned that the CDC guideline was being misapplied by insurers to patients with cancer and sickle cell disease.

In February, the three groups sent a joint letter to Dowell asking the CDC to release an immediate clarification that the guideline was not intended for patients in active cancer treatment.

“Although the CDC guideline clearly states that the guideline is not intended to apply to this population, many payers are still inaccurately applying the CDC guidelines to patients in active (cancer) treatment,” the letter said.

Dowell responded a few days later with her own letter -- stating that the guideline was never intended to deny “any patients” opioid medication, but that alternate pain therapies should be considered.

Her letter also noted that two clinical practice guidelines for cancer pain (here and here) have been published or updated since the release of the CDC guideline.

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“This clarification from CDC is critically important because, while the agency’s guideline clearly states that it is not intended to apply to patients during active cancer and sickle cell disease treatment, many payers have been inappropriately using it to make opioid coverage determinations for those exact populations,” ASCO Chief Executive Officer Clifford Hudis, MD, said in a statement.

“People with sickle cell disease suffer from severe, chronic pain, which is debilitating on its own without the added burden of having to constantly appeal to the insurance companies every time a pain crisis hits and the initial request is denied,” said ASH President Roy Silverstein, MD. “We appreciate CDC’s acknowledgement that the challenges of managing severe and chronic pain in conditions such as sickle cell disease require special consideration, and we hope payers will take the CDC’s clarification into account to ensure that patients’ pain management needs are covered.”

The CDC guideline is voluntary and only intended for primary care physicians treating chronic non-cancer pain. But after its release in March 2016, the guideline quickly metastasized throughout the U.S. healthcare system and became a mandatory policy for many insurers, pharmacies, states and practitioners.

‘Even Cancer Patients Suffer’

Many cancer patients who responded to PNN’s recent survey on the CDC guideline said they were denied opioid medication or not given enough for pain control.

“I'm fighting cancer a second time and I'm not being properly medicated, can't find a pain management (doctor) that will take me on. I have days where I am suffering and have no quality of life!” one patient wrote. 

“I'm a brain cancer patient and the CDC guideline has scared every doctor and oncologist in Connecticut. Even cancer patients suffer and they don't care because that's the law,” another said. 

“I was told two weeks ago that I have lung cancer and still cannot get anything for pain,” wrote another patient. 

“I had to go a year without pain meds and I am a stage 4 head and neck cancer survivor. The sudden withdrawal almost killed me,” said one patient. “Thank God I found a pain management doctor that understands head and neck cancer and the devastating effects it leaves forever. But even he is limited.” 

“I went through 6 weeks of chemo and radiation. My treatment caused muscle and joint pain that on some nights and days are so bad I wish I would have never survived my cancer. They have me on gabapentin. It is okay but does not stop the pain,” wrote another cancer survivor.

None of this is news to the CDC. Within months of the guideline’s release, CDC was warned by its own public relations consultants that “some doctors are following these guidelines as strict law” and that some patients “are now left with little to no pain management.” In a joint letter to the CDC, hundreds of healthcare providers also warned the agency that within a year of the guideline’s release “there was evidence of widespread misapplication” of its recommendations.

But except for an occasional letter -- like the one from Dowell -- there has been no systematic, publicized effort by the CDC to remind insurers, pharmacies and providers that the guideline is voluntary and exempts cancer patients. The agency has also failed to keep its pledge to study the impact of the guideline on patients and to revise it in future updates.

Should Rx Opioids Be Limited for Cancer Patients?

By Pat Anson, PNN Editor

At a time when many chronic and acute pain patients are losing access to opioid medication, patients suffering from cancer pain are treated differently. They’re usually exempt from opioid guidelines that typically focus on limiting prescriptions for “noncancer pain.”

But some oncologists are starting to question whether opioids should be routinely prescribed to cancer patients.

“As an oncologist, I cannot help but reflect on that qualifier. It suggests that a cancer diagnosis gives us permission to prescribe opioids with impunity. Patients with cancer can become addicted, like anyone else. Yet oncologists use these potent, seductive drugs freely, perhaps without sufficient regard for the risk of dependence and abuse,” writes Alison Loren, MD, in an op/ed published in The New England Journal of Medicine.

“Treating patients who are terminally ill from cancer is an important indication for these drugs. But what about patients with cancer who aren’t dying, the ones we hope to cure? Woven into our language about the opioid epidemic is an implication that oncologists can hand out opioids as if there were no tomorrow. But for many people with cancer, there is now indeed a tomorrow.”

Loren, who is a professor at the Perelman School of Medicine at the University of Pennsylvania, says many patients whose cancer was once thought incurable are living for a decade or longer. Thanks to advances in cancer treatment, there are more than 15 million cancer survivors in U.S. and their ranks are growing

“With this progress comes new challenges. Especially poignant — albeit rare — is the one I face when I see a patient who is cancer-free but addicted to medications I’ve prescribed,” wrote Loren. “I am responsible for this predicament, and it feels monstrously cruel — second only to allowing the dependence to continue. Sometimes, like those with ‘noncancer pain,’ our patients veer into abuse.”

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A new study by researchers at the University of Colorado School of Medicine found signs of opioid abuse in a small percentage of cancer patients. Out of 811 patients given opioids after treatment for oral or oropharynx (neck) cancer, 68 patients (7%) were still using opioids six months later.

"You shouldn't need opioids at the six-month point," says Jessica McDermott, MD, an investigator at the CU Cancer Center. “We felt like (opioid misuse) was a long term problem for some of our head and neck cancer patients, but didn’t know how much of problem.”

McDermott doesn’t advocate taking opioids away from cancer patients, but says doctors should know which patients are more at risk of opioid misuse, such as those having a previous opioid prescription or a history of smoking and alcohol use.

"If a patient needed opioids for pain, I wouldn't keep them away, but especially if they have risk factors, I might counsel them more about the risks of addiction and misuse, and keep an eye on it," McDermott says.

Loren would take opioids away from a cancer patient at risk of misuse. She shared the story of a leukemia patient with a long history of substance abuse who was found dead in her hospital bed.

“Her leukemia was in remission. The possibility that she may have overdosed haunts me,” Loren wrote. “Oncologists are accustomed to giving opioids, but we must also be comfortable taking them away, and sometimes giving them in limited doses or not at all.”

Is CDC Opioid Guideline Harming Cancer Patients?

By Pat Anson, Editor

It was only intended for primary care physicians who treat chronic non-cancer pain, but the CDC’s opioid prescribing guideline has had a sweeping effect on the practice and quality of pain management in the United States.

The guideline is also causing confusion among oncology specialists who treat cancer and adding to the “already appalling burden of unrelieved cancer pain,” according to an op/ed being published in JAMA Oncology.

Two experts in oncology and palliative care at the University of Pennsylvania say some of the CDC’s recommendations are based on weak evidence and conflict with national cancer pain guidelines.

"This lack of evidence, coupled with conflicting and competing contemporary guidelines from diverse authoritative agencies and organizations carry the potential to confuse, if not seriously jeopardize, pain management for patients with cancer who are living with moderate to severe pain, adding to an already appalling burden of unrelieved cancer pain," wrote Neha Vapiwala, MD, and Salimah Meghani, PhD.

Meghani is a Professor of Nursing and Chair of Palliative Care at the University of Pennsylvania School of Nursing, while Vapiwala is a Professor of Radiation Oncology and Vice Chair for Education in the Perelman School of Medicine at the University of Pennsylvania.

Although the CDC guideline is intended for chronic pain patients outside of active cancer treatment, it includes patients “who have completed cancer treatment, are in clinical remission, and are under cancer surveillance only.”

Meghani and Vapiwala say the CDC’s inclusion of “cancer survivors” is a mistake because it is not uncommon for cancer pain to persist long after the cancer is treated.  

“Unfortunately, this arbitrary distinction is not consistent with the evidence of pain trajectory in cancer survivors,” the wrote. “More important, similar levels of pain were reported in survivors who were still receiving cancer treatment and those who had completed active cancer treatment.”

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The CDC guideline also conflicts with the guideline of the National Comprehensive Cancer Network (NCCN), which is widely used by oncology physicians. The NCCN recommends that doctors use both short and long-acting opioids when treating flares from cancer pain, while the CDC recommends against long-acting opioids because of the potential risk of addiction.

The CDC also recommends that non-pharmacologic therapy such as meditation and non-opioid drugs such as gabapentin (Neurontin) be used for chronic pain. But Meghani and Vapiwala say there is little evidence those therapies work in managing moderate to severe pain.  They're urging the CDC, NCCN, American Medical Association and other organizations to develop more uniform guidelines based on solid evidence.

"Many of the current recommendations around opioid prescribing practices stem from expert consensus rather than empirical research, which is urgently needed to generate and develop informed guidelines for patients with chronic cancer-related pain," they wrote. "Clinicians who care for patients with cancer are frustrated by an increasingly overwhelming set of institutional, regulatory, and policy requirements around opioid prescribing that can interfere with being good stewards and advocates for their patients with pain.”

Cancer Patients Denied Opioids

Some cancer patients say the CDC guideline has interfered with their treatment.

“I had a painful radical surgery for cancer and was only provided 3 days of low-dose opioids per CDC guidelines and suffered terribly for 2-3 months. Still have persistent pain 5 months later due to poor acute pain control,” one PNN reader told us.

“My brother in law was just diagnosed with stage 4 pancreatic cancer with metastasis to the liver and his first oncologist refused to treat his pain adequately due to the CDC guidelines, telling him I'm not risking my license for you,” another reader said.

“I have a family friend who is a cancer patient in her mid-sixties. Her doctor pulled her off of her morphine without warning, and she has been left to suffer,” wrote another.

“I'm stuck with a bad physician in order to get pain management. No other doctor in this county will do pain management,” said a patient who has to drive 45 miles to get treatment. “My doctor misdiagnosed my stomach illness and missed my cancer all together.”

Other patients say their pain is just as bad or worse than cancer pain – and don’t understand why they are treated differently under the CDC guideline.

“These are guidelines, not meant for all patients. And to exclude ONLY cancer patients is outrageous,” wrote one patient who was born with a rare and painful digestive disease. “Why should I have to be penalized because I have a rare disease and not cancer? These rules and regulations that are coming out make me wish I had a cancer diagnosis.”

A Pained Life: Help Us Help America

By Carol Levy, Columnist

I had a friend who was diagnosed with lung cancer. We were all afraid for her. Not only because we feared for her life, but because of all the horrors we hear surrounding treatment for cancer.

She had surgery and a part of one lung was removed. When I spoke with her after surgery, I hesitantly flirted around the edges of the question: chemotherapy, radiation, how awful will it be for you?

My worries were unwarranted. Her answer was completely unexpected.

"I don't need anything else,” was her reply. “My doctor said, ‘You had cancer. Now you don't.’”

Wow. What strides they have made against this horrendous disease.

There is no question how feared cancer is, how dreadful the disease is and the possible repercussions -- from the cancer itself or as a result of the terrible treatments used against it.

The federal government throws huge amounts of money at cancer research and new treatments. As they must. Cancer scares everyone. It must be eradicated, if at all possible.

Cancer also costs the economy. Treating cancer in the United States cost nearly $125 billion in 2010 and is projected to reach $156 billion in 2020. The government would be accused of malpractice if they ignored this life and money devouring monster. And they don't. That is one reason my friend had it and then she didn't.

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 What is the economic impact of pain? Between $261 and $300 billion annually in healthcare costs alone. Add in lost works days and productivity, and the tab reaches $635 billion.

Estimates vary, but according to the American Academy of Pain Medicine, 76.2 million Americans have chronic pain, compared to 20.8 million with diabetes, 18.7 million with coronary heart disease and stroke, and 1.4 million with cancer. In other words, chronic pain affects more Americans than diabetes, heart disease, stroke and cancer combined.

So why is chronic pain ignored? Why do we continually have to fight for the dollars to fund research and development of new treatments? The National Pain Care Act languished in the U.S. Senate for many years with no action taken. Under the Affordable Care Act (Obamacare), it was finally incorporated as an amendment that calls for more pain education of physicians, and more dollars for pain research and the development of new treatments.

So where are the dollars? Where is the research? Where are the new treatments?

So far, they seem nonexistent. Instead, the one option that many pain sufferers have – opioid medication -- is being taken away. We are the whipping boys of the “opioid epidemic.”

Many of us have been helped by opioid medication. Some are less disabled by pain. Some are helped enough to continue working and pay taxes, reducing our drain on the economy.

This should be celebrated and expanded, by giving us access to medications that provably help, at least until other treatments become available. But instead of assisting us in improving our lives, the government is giving us policies and “guidelines” antithetical to helping the chronic pain community. The consequences of these dreadful policies – higher healthcare costs, more disability, lost quality of life, and suicide -- are being ignored.

Is that because it makes for better headlines when politicians scream about the so-called opioid epidemic?

There is no doubt there is a big problem with the overuse, abuse and illegal use of narcotics. But we are not the bogeyman in this fight. Less than one percent of opioid medication that is legally prescribed falls into the wrong hands.

If they truly wanted to help the country, they would look seriously at the consequences of making us the bad guys. Many of us who were doing better as a result of opioids have been forced to reduce our dose or are no longer able to get a prescription. It’s not saving lives and it’s not preventing addiction. Look at how the overdose numbers keep rising. This is a benefit to no one. Not for us as individuals or to the country as a whole.

Our pain is invisible, but so too are cancer, diabetes, heart disease and many other conditions. Insulin is okay. Statins are okay. Chemotherapy is okay. Opioids are the devil.

The devil, as they say, is in the details. And the details are very clear. Opioids help pain patients. They allow us to help the country. We keep looking for a way in, to make our voices heard. Maybe we should make patriotism our rallying cry. When you hurt us, you hurt the country. Help us help America.

Until the government, DEA, CDC and politicians can find other ways to reduce or even eradicate chronic pain, take us off your list of opiate abusers.

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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.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.