Another fight for Covid long-haulers: having their pain acknowledged

After his second hospitalization for acute Covid-19, Tony Marks expected to get better. Then pain invaded the 54-year-old software executive’s arms and legs. At first, he felt like he was covered by deep bruises, although nothing was visible on his skin. These days, he told me, he feels like he’s being beaten repeatedly with a baseball bat.

Pain is increasingly being recognized as a key feature of what is commonly called long Covid, in which symptoms persist after the acute phase of the viral infection ends.

In a recent study from Italy, for example, one-third of Covid long-haulers had symptoms of fibromyalgia or widespread muscle or bone pain. Other research links Covid-19 to neuropathic pain — often described as burning, stabbing, or feeling like electrical shocks — that results from damage to the nervous system. Pain, which also includes headache, ranks among the top symptoms of long Covid in large longitudinal studies.

Yet the medical establishment has been sluggish in acknowledging and treating the pain that people with long Covid experience.

For those of us who already live with persistent pain, delayed action is nothing new.

One day in 1994, as a 30-year-old working in my office at the U.S. Department of Justice, my back began to burn. It felt as if acid were eating my spine. Suddenly, muscles from my feet to my neck tensed like cable wire; my whole body seized up and I fell from my chair to the floor. For many years after that, I was largely bedridden and extremely limited in my ability to sit, stand, or walk.

It took three years of slogging through the health care system in search of a cause — nerve conduction tests suggested multiple sclerosis while bone scans indicated ankylosing spondylitis — before my disability was identified as stemming from a surgical mishap.

But for many people, the search for the source of chronic pain lasts far longer than that. Health research professor Dania Palanker, a patient advocate I work with at the National Pain Advocacy Center, waited 28 years for an accurate diagnosis that explained the pain she had suffered since childhood. Diane Talbert, another patient advocate, had her life-long pain tied to a severe form of psoriatic arthritis — 25 years after her psoriasis was discovered at age 6.

Imagine waiting a quarter century for answers — or worse, never getting them at all.

One reason that persistent pain can go undiagnosed for so long is that health care workers are undereducated about diagnosing and treating pain. In addition, while research into understanding persistent pain has improved, our nation’s investment in it still falls far behind other widespread, consequential, and costly conditions.

In 2020, NIH-funded research on chronic pain totaled $689 million. That sounds like a lot of money until it’s compared with cancer or brain diseases, which received more than ten times that amount. The investment also pales when you consider that persistent pain now costs the U.S. as much as $700 billion each year in health care expenses and lost productivity.

Even before the pandemic, 50 million Americans — that’s 1 in 6 of us — lived with daily pain, significantly more than live with cancer, diabetes, or heart disease. For almost 20 million Americans, the pain is so extreme that it is effectively disabling, regularly preventing them from engaging in the most basic activities or in work.

Long Covid is now adding a whole new group of people to the chronic pain population. Eight months after his positive test for Covid, Tony Marks told me, “Nothing touches my pain. Nothing.”

In my work as an advocate for people in pain, I hear familiar themes when talking to those newly adjusting to life with pain from long Covid. Many feel misunderstood by family, friends, and employers; some have lost jobs but have been denied Social Security and other benefits.

Tony Marks had to step down from his executive position, but his employer accommodated him in a job with less responsibility. I too was able to continue working in the years before surgical innovation restored my mobility. But not everyone is so fortunate. Many people I’ve spoken with have had to stop work altogether.

Getting to the root of why pain is misunderstood is complicated. Pain has been stigmatized for centuries. The idea that it is ordained by a higher power, or that those who suffer deserve it, is reflected in “poena,” the Latin word for pain, which means penalty or punishment.

And many people — including many clinicians — don’t understand the difference between acute and chronic pain. Everyone experiences acute pain, which is adaptive and necessary, alerting us to danger or teaching us to seek care or rest. Chronic pain, in addition to impairing a person’s quality of life, actually harms the body: it can damage nearly every organ system. For this reason, many experts consider it to be a disease in its own right.

Pain is also invisible, making it possible for others to be unaware that someone is experiencing it or to even doubt or deny its existence. This invisibility, and the fact that the experience of pain is subjective, means that how doctors treat pain often depends, at least initially, on how those who suffer describe their pain.

Not everyone’s account of their pain is given equal weight or credence. Health care providers, for example, often rate the pain of Black people as being less severe than that of their white counterparts. And women reporting pain in medical settings are more likely to have their pain discounted than men.

Suspicions about pain have also grown amid the overdose crisis attributed to opioid overprescribing, but it’s a mistake to conflate the corporate actions of Big Pharma and the unethical actions of some prescribers with the problem of pain itself.

The good news for the newcomers with long Covid chronic pain is that early intervention can help prevent pain from progressing from acute to chronic and from chronic to disabling. But that makes their concerns urgent; providers must listen to and treat them now.

The World Health Organization has released a clinical definition of long Covid, which specifies common symptoms along twelve domains, and includes joint and muscle pain, headache, and neuralgias, among others. In the U.S., doctors on the front lines of treating this new disease have rightly called for a national crisis management plan for Covid long-haulers. Addressing pain, which is so often neglected in the U.S. health care system, must be a central part of this crisis management effort.

And for the rest of us with non-Covid chronic pain, the U.S. needs a better infrastructure for assessing, diagnosing, and treating pain, as well as investing more research dollars into identifying and understanding the causes of chronic pain. Also needed: better insurance coverage for the gold standard of pain management as it currently exists, which combines different kinds of treatment — including medications, interventional therapies like blocks or procedures, psychological therapies, physical therapies, and integrative techniques. Access to such interdisciplinary care must be made available to more people suffering with chronic pain.

A chronic condition that affects more Americans than any other, and one that is growing amid a global pandemic, should no longer be disregarded. It requires attention — stat.

Kate M. Nicholson is a civil rights attorney and the founder and president of the National Pain Advocacy Center, a 501 (c) (3) nonprofit that takes no industry funding and advocates for the health and human rights of people in pain.