The Feather and the Knife: Navigating Life With Chronic Pain – POZ
♫ Tuesday, August 17th, 2021For Jess Guilln, pain is a feather touch and a constant companion. To illustrate, Guilln, who has been living with HIV since 1985, moves one elegant hand, bending at the wrist to mimic running a feather gently along skin.
I just start doing this over and over and over, he says. I tell people, This is a feather. But what do you feel if I keep doing this for 30 minutes, or for an hour?
Usually, folks push him away, irritated at the sensation. Thats one of the ways Guilln describes the chronic pain that sometimes keeps him in bed until noon and can make every step hurt. But thats not the only way he describes it. Theres the feeling of a nail or a thorn from a rose pressed nonstop against skin. And then, theres the pain that wakes him up in the middle of the night and consumes his thoughts, like a knife stabbing him over and over again. For Guilln, chronic pain is a lack of sensation, then, all at once, too much sensationand a sensation he cant escape.
It never stops. [People with chronic pain] dont get used to it, but we manage somehow, he says. We still want to experience life in some way.
Guilln is far from alone. Studies have found that between 25% and 85% of people living with HIV experience chronic pain, compared with estimates of 11% to 20% of the general population. Often, this is neuropathic painpain that starts in the brain but is usually experienced as numbness, tingling, burning or stabbing in the limbs, hands and feet.
Despite the high rates of pain, some research suggests that people living with HIV are less likely to be prescribed opioid pain treatment than their HIV-negative peers. The additional challenge of coexisting substance use disorders can render even that form of pain relief elusive for some people with HIV. But the opioid epidemic has led to new research on pain and how to address it at its core, including specifically for people living with HIV.
What We Know About Pain and HIV
Jessica Robinson-Papp, MD, had just come off a general medicine internship at St. Vincents hospital in New York City, where she fell in love with working with HIV-positive people, when she began training in neurology. Luckily for her, she was able to combine her passions. Today, shes a clinical neurologist at New York Citys Mount Sinai Hospital, serving people with HIV who have a variety of pain syndromes.
The more people with HIV she saw, the more Robinson-Papp realized that peripheral neuropathy was usually just one of a litany of pain complaints her patients had.
Youll start talking about neuropathic pain, she says. And then theyll say, Oh, but then, theres back pain, and Theres pain radiating down, and Theres pain over here, and Then, there are headaches.
What shes learned, and what the science of pain in general has revealed, is that there is no one cause of pain, or, if there is, science hasnt discovered it yet. Its not even clear whether people living with HIV really experience more pain than people without HIV, Robinson-Papp says.
We dont even really know that, she says. Understanding the [source] of pain is very much in its infancy.
We manage somehow. We still want to experience life.
What researchers do know is that pain is more likely a syndromea constellation of symptomsthan one disease with a single cause that can be cured. In fact, each kind of pain could have a different cause.
For instance, neuropathy is often a side effect of older HIV medications or chemotherapy for AIDS-defining illnesses. It could also be due to accelerated aging in people with HIV. Then theres degenerative joint diseasethat is, joint pain due to osteoarthritis or avascular necrosis, which often necessitate joint replacements. For people who menstruate, menopause can come with its own kinds of pain. HIV-associated chronic inflammation is another likely contributor to pain, Robinson-Papp says.
Whats more, people with one pain syndrome, such as HIV-associated peripheral neuropathy, are more likely to have another, like migraines or joint pain from osteoarthritisor even multiple other pain syndromes. Scientists dont know why that is either, says Robinson-Papp.
Plus, some factors may amplify ones perception of pain. For instance, its possible that some HIV viral proteins themselves may enhance pain. Pain is also associated with other health conditions, such as depression, anxiety or posttraumatic stress disorder, most of which can be part of whats known as AIDS Survivor Syndrome, a cluster of symptoms resulting from trauma endured during the early years of the epidemic.
Then there are factors that can make it easier to focus on pain, like the social isolation that can accompany aging. Moreover, certain behaviors, such as lack of exercise, can increase pain, and conditions such as insomnia or drug misuse or addiction (which can be an attempt to self-medicate) can complicate how individuals cope with pain.
All of this can impact the ability to take HIV meds as prescribed, which can deprive people with uncontrolled pain of the health benefits of having an undetectable viral load.
So when Robinson-Papp talks to patients about options to alleviate pain, the first step is to see if theres a physical reason for it, like diabetes, autoimmune diseases, infections such as hepatitis B or C or malnutrition associated with alcoholism.
But once Robinson-Papp has helped patients address those problems, there are only a few proven solutions she can offer people to help manage their pain or at least cope with it. These include physical therapy, massage, acupuncture, mindfulness-based stress reduction, cognitive behavioral therapy, exercise, non-opioid pain relievers and cortisone injections (for joint pain). Some data show that cannabis and capsaicin (derived from chili peppers) alleviated some pain in people with HIV, according to a systematic review published in a recent special issue of the journal AIDS Care on the topic of HIV and chronic pain that Robinson-Papp coedited. But the quality of the data were low, and more work is needed to confirm their effectiveness, researchers wrote.
That leaves one last option. Sometimes people are on opioids, she says. Thats a fact of life.
Guilln knows this all too well. Its taken years to find the right mix of meds, one that keeps the pain to a manageable level but doesnt wallop him with brain fog or fatigue. He rattles off the list of meds hes tried for pain: Cymbalta, morphine, medicines for depression, even schizophrenia drugs.
For five years, hes been on a regimen that works for him: a base of 20 milligrams of OxyContin (oxycodone hydrochloride) twice a day, with Norco (a combination of hydrocodone and acetaminophen) as needed but no more than one pill every four hours. He augments these with over-the-counter pain patches, hot and cold compresses, a device to deliver nerve stimulation to muscles and massagers.
Temperature, movement, vibrationthese are all different elements that affect whatever youre feeling, he says. But this is not a formula or a recipe. It is a lot of work, sadly, to find whatever works for you.
Opioid Epidemic Leads to Innovations
Sciences understanding of HIV and pain may be about to change, however. In the HIV and chronic pain issue of AIDS Care, a global task force of HIV experts began to lay out a research agenda for studying pain in people with HIV. (Their preference: Start with what causes it.) The issue includes new data showing that many HIV-positive people cant separate their chronic pain from their experience of having the virus.
The HIV Global Pain Task Force, of which Robinson-Papp is a member, is now soliciting recommendations for the HIV pain research agenda from people living with HIV.
Another effort is more wide-ranging. The National Institutes of Health (NIH) launched the Helping to End Addiction Long-term (HEAL) Initiative in 2018 and has so far funded it with $1.5 billion to back experimental research and the development of medical devices that might treat opioid use disorder or address or prevent pain.
The funding also supports the Pain Management Effectiveness Research Network, which is testing existing non-opioid drugs against pain, and the Pragmatic and Implementation Studies for the Management of Pain to Reduce Opioid Prescribing as well as new research paths for interventions that could treat pain without requiring opioids.
Thats where Marco Loggia, PhD, associate director of Massachusetts General Hospitals Center for Integrative Pain NeuroImaging, comes in.
Loggia isnt an HIV researcher. But he has dedicated his career to studying what pain of all sorts looks like in the brain using PET and MRI scans.
Neuroinflammation is what brought him to HIV. Chronic HIV infection can lead to persistent immune activation and inflammation even among people on effective antiretroviral treatment who have an undetectable viral load.
Loggias lab was the first to show that in people with chronic pain a protein in the brain called translocator protein (TSPO) is present in unusually high numbers in the thalamus, the part of the brain that perceives pain and other stimuli. If his theory is correct and the presence of TSPO in people with chronic pain isnt just a coincidence but actually an objective marker of how much pain people are in, lowering TSPO might also reduce how much pain a person feels, without the need for opioids. Drugmakers could then develop medications that target and reduce TSPO and therefore reduce the pain itself.
HIV is a perfect storm of neuroinflammation, he says. We wanted to knowabove and beyond the inflammation associated with the viruswhy some people with HIV have pain and some dont.
In short, if all people with HIV have neuroinflammation, why dont they all also have pain? And does neuroinflammation look different in the brains of HIV-positive and HIV-negative people with chronic pain?
Loggias current study is recruiting participants in the Boston area to be part of an imaging study to look at just this. It divides participants into three categories: 30 people living with HIV without chronic pain, 30 people with HIV and chronic pain who engaged in opioid pain management and 30 people with HIV with chronic pain not taking opioids. Thats because of another complication of opioid use: Scientists think ongoing opioid use could actually increase inflammation, and maybe TSPO, in the brain.
The HEAL Initiative gives Robinson-Papp hope for the future of pain treatment for people living with HIV.
The HEAL Initiative has really brought together the addiction world and the pain world, which I think is extraordinarily beneficial, particularly for the pain world, because there are ways addiction medicine conceptualizes care that would be really lovely for us as well, she says, noting addiction cares focus on harm reduction. You have to think about the whole personwhere they live, what the context of their pain is.
Jess GuillnAngela DeCenzo
Reclaiming Joy
One of Guillns early memories as a child was dancing with his aunts. One aunt would take him by the hand, and another aunt would grab his sister. They would teach the kids salsa and other dances. When Guilln remembers it, he beams with adoration for his aunts, one of whom recently died.
In the years since, his experience in his body is, like pain, never just one thing. The breathtaking rush of a first kiss and first touch with another man linger with memories of the burning under his skin that came with his HIV diagnosis. The horror of the feel of bald patches on his scalp from the stress of being closeted and living with HIV in 1985 coexist with the youthful energy of nights spent at discos, dancing until dawn. Theres the mix of adrenaline and the great vibration in his chest from standing in front of a crowd and singing. Now, at 60, in chronic pain and with a hip replacement, Guilln is proud of the fact that these days, when he does dance, he can still break it down all the way to the ground.
Sometimes, when every step on the sidewalk feels like stabbing, he imagines hes walking on a bed of Jell-O. It takes him out of his current body, this painful body that nevertheless he loves.
He can still access the joy he felt dancing as a child. It will cost him in energy and recovery later, but for five or 10 minutes, his feet move in that familiar way, in concert with his shoulders, hips leading, weight shifting from balls of feet to heels, shoulders shifting to compensate. For those minutes, he is that child again, dancing in the kitchen with his aunt.
Some days, thats just a fantasy. But he can escape into that memory and know what its been like to be a whole person in a currently painful body.
Even if were sitting down, we can have those wonderful memories of movement, he says, as his hands come up in front of his chest and his shoulders shimmy. And even with just the hands, or the hands right here, we are in our brains really doing the twist. And it might help.
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The Feather and the Knife: Navigating Life With Chronic Pain - POZ