The Problem of Long COVID Pain
Pain is the number one symptom in people with long COVID
People that live with long COVID, also known as PASC (Post-Acute Sequealae of SARS CoV-2 infection) are hurting. Joints, muscles and knees are aching, throbbing, burning, stinging or spasming. But what is causing such distress? It is especially puzzling that people who were never hospitalized with COVID are now struggling to feel better months or even a year or more after the acute illness.
When asked about the etiology of pain in long Covid, Joseph Herrera, systems chair and professor at the Department of Rehabilitation & Human Performance for the Mt. Sinai Health System in New York, said, "It's important to remember that what I tell you today may be different tomorrow."
"We are seeing people who haven't yet been diagnosed or treated for long COVID even though they've been symptomatic for months."
"We're learning more about this subject through our collective work at the American Academy of Physical Medicine and Rehabilitation (AAPM&R), which includes academic researchers, advocacy groups, clinicians, and patients," Herrera said.
He adds, "We are seeing people who haven't yet been diagnosed or treated for long COVID even though they've been symptomatic for months. As a result, we treat people without fully understanding the cause of their symptoms."
Strikingly, long COVID clinics around the country have seen a rush of people suffering long-term sequelae. Symptoms range from respiratory distress, POTS (a dysfunction of the autonomic nervous system), fatigue, brain fog and general body aches.
Types of Post-COVID Pain
In addition, indications of the disease can vary for patients with myalgic encephalopathy/chronic fatigue syndrome (ME/CFS) or fibromyalgia. Though beyond the chronic, widespread pain, other post-COVID pain might include:
- myalgia (muscular pain)
- arthralgia (joint pain)
- nociceptive pain, caused by damage to body tissue
- myofascial pain or pain associated with tender, tight muscle bands
- myositis or muscular inflammation and pain
- neuropathic pain or neuralgic disorders of the nervous system
- viral arthritis
Indeed, pain, which can have varying characteristics, may be localized to a particular body area in some patients while being diffused or widespread in others. Therefore, some clinicians refer to diffuse, generalized pain as "multi-site pain."
Further, cervical and lumbar spine and lower and upper extremity pain may appear familiar. Typical regional areas for arthralgia (joint stiffness) are the knee joint, ankle joint, and shoulder joint. Headaches are also reported, particularly occipital neuralgic headaches, abdominal pain, and chest or throat pain.
Causes of Long COVID Pain
Part of the reason people haven't been diagnosed or appropriately treated is that many of them have negative test results. X-rays and MRIs are normal, and yet, on physical exams, it is evident they are in pain.
Therefore, some clinicians refer to diffuse, generalized pain as "multi-site pain."
Like other post-viral illnesses, people with long COVID often struggle to convince skeptical medical professionals that their pain, suffering, and disabilities are genuine.
When it comes to causes of pain in long COVID, theories and hypotheses suggesting that several processes may be responsible abound. The virus may directly attack nerves, the spinal cord, and the brain. Excess blood clotting (coagulopathies) may be correlated with increased pain, as is an injury to central and peripheral pain systems.
Researchers have found that SARS-CoV-2, or the virus that causes COVID 19, leaves a gene expression signature in neurons (nerve cells) that relay sensory information to the brain.
As Herrera said, "We are beginning to think there may be a link with connective tissue disorders such as Ehlers-Danlos syndrome." This group of hereditary disorders primarily affects the skin, joints, and blood vessel walls, joint instability, joint hypermobility, and other abnormalities.
How To Treat Long Covid Pain
Treatments for pain are focused on managing symptoms and providing relief even if the causes are not yet well understood. According to Herrera, "Many of our post-COVID patients suffer from fatigue and brain fog as well as pain, and they experience post-exertional malaise (exhaustion after minimal activity)."
Treatments for pain are focused on managing symptoms and providing relief even if the causes are not yet well-understood.
These patients, in particular, need a gradual exercise program since their bodies are not acclimated to stressors such as pressure or temperature change," explained Herrera.
On the other hand, drug therapies such as duloxetine, gabapentin, and pregabalin act on pain modulation, or the process by which the body alters a pain signal as it is transmitted along the pain pathway. For patients who suffer nerve pain, medications such as Lyrica can be helpful.
Interventional pain management includes epidural injections or medication injected directly into a painful joint like a knee. "This may be the first line of treatment if the patient is not responding to oral medications and if they are still suffering from such profound fatigue that they are unable to participate in physical therapy," Herrera said.
Another potential treatment is using a stellate ganglion block with local anesthetics, which temporarily reduces pain by disrupting the processes responsible for the cytokine storm (hyper-responsiveness of the immune system) that cause inflammation.
Other non-pharmaceutical treatments may include spinal cord stimulation, repetitive transcranial magnetic stimulation, and transcutaneous electrical nerve stimulation. "Traditional physical therapy can be challenging with long COVID patients because of the extent of their fatigue and post-exertional malaise," said Herrera.
"Seek the right experts and fight to get the care, compassion, and skilled treatment you deserve."
Sleep disturbances, lack of physical activity, and negative emotions such as anger or feelings of hopelessness can worsen and even prolong the pain, so multimodal approaches are necessary to help ensure the effectiveness of pain relief methods.
"There are many evidence-based treatment options when working with these patients, and we need to utilize them all," Herrera added. "When working with long COVID patients, or any chronic pain patient, we use a holistic paradigm that recognizes that the sources of pain are physical, emotional, and spiritual."
"We need to deal with the emotional aspects of the pain, appropriately assessing and treating anxiety and depression which may not be causing the pain but can certainly exacerbate it," he said.
Herrera also said that some health practitioners still treat patients as if they are exaggerating their symptoms or living with an emotional rather than physical problem.
His advice for long COVID sufferers? "Do not doubt yourself. People must believe in themselves and advocate for themselves. Seek the right experts and fight to get the care, compassion and skilled treatment you deserve."