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Marco, 40, had one of the first cases of monkeypox in Edmonton, Canada. When he talked to BuzzFeed News in June, his symptoms were relatively mild.
At that point, Marco had a single lesion under his tongue, which didn’t hurt much. Then, just after our story ran, it did. And then, it really, really did.
“Remember, I told you in the early stages, I thought it was a canker sore?” Marco said. At first, it didn’t even hurt when he ate tacos with hot sauce.
“That was just the early stages,” Marco said. “As the lesion progressed, it started getting to the point where eating, drinking, even just moving my tongue would be excruciating, because it was located right on whatever that piece of flesh is that connects the tongue to the bottom of your mouth.”
Marco had been soothing the wound on his frenulum (that’s what this mouth tissue is called) with sips of hot chamomile tea. One day, he realized the tea wasn’t helping anymore. In fact, it was making it worse.
Throughout his life, he has always made a point to avoid opiate painkillers, but since he could no longer eat, he had no choice. He checked himself into the emergency room, where he received a prescription for Percocet. Even with that high-power painkiller, Marco said his symptoms were only slightly relieved.
“It helped with the pain a little bit,” he said. “Not fully, but it made it bearable.”
Marco’s case of monkeypox is considered mild, and he considers himself lucky. Some folks with more severe illness report hundreds of the painful bumps on every square inch of their personal real estate, with round-the-clock pain for weeks.
In this current global outbreak of monkeypox, as of Aug. 16, there have been 38,019 cases in 93 countries, including 12,689 in the US with cases in 49 states and Puerto Rico. If there is an upside to the rising case count, it is that it comes alongside more knowledge to be shared about which remedies and medications can help keep symptoms under control.
We spoke with four people who have experienced intense monkeypox symptoms and asked them to share what has worked to mitigate their discomfort.
Jeffrey, 39, is a gay man in an open relationship living in San Francisco. He believes he contracted monkeypox in early July through sex with a semiregular partner. Early on, when he had just a few lesions, Jeffrey tried spreading calamine lotion on them in order to dry them out, but his infection kept progressing and the lesions spread. In many places, they were bunched together like welts. His doctor said the calamine lotion may have been to blame.
“He was like, ‘Well, maybe you’re actually spreading the viral fluid all over your body. Maybe don’t do that,’” Jeffrey said. “So, I stopped doing that, but by that point, the lesions had already taken over.”
Dr. Bernard Camins, an infectious disease specialist at Mount Sinai Hospital in New York, advises any patients who choose to use topicals like calamine lotion on their lesions to be precise and use a cotton swab.
“If you’re rubbing something everywhere, you could potentially spread the virus all over,” Camins said. “If someone is going to use calamine lotion to help with itching, they should put it directly on that spot and wash their hands immediately after.”
The pain was “like a fiery rusty chainsaw constantly going off in my ass 24 hours a day.”
Jeffrey’s infection ballooned. He tallied 200 sores before he lost count, and those were just the ones he could see. Most of the pain was in his rectum, which he described to his doctor as “like a fiery rusty chainsaw constantly going off in my ass 24 hours a day.”
“I actually stuck a finger up there to see what was going on,” Jeffrey said. “It felt like a bag of pearls, like all these hard, round, very painful things. I’ve never felt anything like it.”
To try to numb the deep intense pain in his anus, Jeffrey tried a lidocaine gel, which is a topical anesthetic available over-the-counter and in some hemorrhoid creams, but that just made it worse.
“I tried it once, and I was like, ‘Fuck this!’” he said. “It hurt more to put it on than any effect it may have had.”
(Keep in mind that lidocaine-containing products should be used with caution and only in relatively small amounts. Using too much can affect organs like the brain or heart.)
Jeffrey got the most relief from lying on his stomach, though he said that only worked for so long, since eventually he had to sit up. He lives in an apartment with his partner, but they have been isolating. His partner has tested twice, and both times came back negative. Jeffrey has not left the bedroom for weeks. He continues to work remotely, waiting for the last of his lesions to finally clear up.
“Who knows with any of this?” he said. “The only thing that really works to make it go away is time.”
Time — and maybe pharmaceuticals. Jeffrey’s doctor prescribed hydrocodone for the pain, and the experimental antiviral drug tecovirimat (Tpoxx). Jeffrey said the hydrocodone took his pain “from a 10 to about an 8.”
Other topicals folks have reported trying are hydrogen peroxide and a Native American smallpox remedy called Sarracenia purpurea. None of the medical experts we spoke with had any knowledge of Sarracenia purpurea, but everyone cautioned against using hydrogen peroxide on monkeypox lesions, particularly Donald Nardelli, a registered nurse who has treated more than 45 cases at Pittsburgh’s Central Outreach Wellness Center.
“Using an abrasive solution like hydrogen peroxide could keep these wounds irritated and open, and I don’t think that’s our best option,” Nardelli said. “If we can allow the base of the lesion to dry up, that’s when we’re seeing the healing coming from the inside out.”
And above all else, never, ever touch your eyes after touching your lesions.
“You can actually transfer the virus to your eyes and have some pretty serious problems,” Camins said.
Ophthalmic infections of monkeypox can cause conjunctivitis, edema of the eyelids, and in some cases even blindness.
Liz, 39, is a gymnastics coach and a married mother of five in Chicago who believes she contracted monkeypox while spotting a student during a complicated balance beam routine. One day, she noticed her lymph nodes swelling a bit. She knew something wasn’t quite right, but she didn’t know what. Then, she received a call from the board of health that she had been exposed, and she put it all together. At that last balance beam session, one of her students, a young woman in her early 20s, had visible bumps.
Liz braced herself from the moment she got the news about her monkeypox exposure. She has an antibody deficiency and relies on intravenous immunoglobulins, or IVIG, derived from plasma to help fight off any infection.
“I already live based on donations of IVIG for my immune function,” she said. “So I was like, ‘Lovely! This is gonna be fun!’”
At the height of her infection, Liz got painful lesions all over her body. She said the thing that gave her the most relief was taking very hot showers and baths.
“Was it just distracting me from the pain and providing me with another sensory input?” she said. “Sure, that’s a possibility, but it did seem to help.”
Camins agrees that Liz was probably misdirecting her sense of pain with some other type of pain, but he doesn’t think people should use very hot water to try to soothe the pain.
“There’s a potential that someone could burn themselves this way. I just don’t think that’s a good idea,” he said. “I think that person should see a doctor about their pain instead.”
Still, most experts do agree that reasonably warm sitz baths are a good idea, particularly for those experiencing rectal pain. A sitz bath is a warm, shallow bath often used to treat hemorrhoid- or childbirth-related pain. “If this skin is very frictional and needs to soften up some, the heat could help with that,” Nardelli said.
Some people have also tried dabbing lesions with a cool washcloth, surrounding themselves with ice packs, and standing in front of a fan or air conditioner.
“During some of the painful periods, cold may provide some good relief, and there will likely be periods when you experience itching as a part of the healing process where I would also use cold,” Nardelli said.
Liz’s infection spread to her mouth and throat. The oropharyngeal lesions became so severe that she eventually couldn’t even swallow. Unable to eat or drink, she called her doctor, who prescribed liquid oxycodone, a narcotic painkiller. For over a week, she had to take a sip before every meal.
“I had five kids, all natural, no drugs. I’ve broken many bones. I’ve had kidney stones and a full breakdown of my immune system. I’m a walking disaster,” she said. “But this pain… This pain… It really is quite awful.”
Rahul, 31, is a gay man living in Luxembourg City. He isn’t sure how he got monkeypox. He had only one recent sexual partner, but a few weeks before his symptoms kicked in, he had traveled to Spain and gone to a few crowded parties. Spain was an early hub of the disease and remains second in the world for confirmed positive infections at 5,719. Comparatively, Luxembourg’s total is now only 43, and Rahul was one of the country’s first cases.
Rahul wasn’t sure what was going on when he started to feel intense rectal pain. He didn’t suspect monkeypox at first, and neither did his doctors. They started by misdiagnosing him with hemorrhoids, then anal fissures. In the process, they prescribed him a litany of medications that did little to help. It was not until Rahul went to the emergency room that he was finally able to get diagnosed with monkeypox. Even then, the infectious disease specialist on duty prescribed only an average dose of ibuprofen — and this was not your average pain.
“People who have gone through surgeries, people who have had automobile accidents, they say this is worse than any of those,” Rahul said. “I haven’t gone through those experiences, but I can vouch that this is like the worst pain I have ever felt in my entire life.”
Unsurprisingly, the ibuprofen did little to ease Rahul’s discomfort. He found the greatest relief in lying perfectly still in a particular position.
“This is very embarrassing, or maybe not embarrassing, maybe traumatic. I was laying for hours just holding my butt cheeks apart so they didn’t clench, because if they clenched, I would be destroyed,” he said. “There was one period like that for a couple of days.”
Nardelli supports any physical position that provides a patient comfort, encouraging them to keep their lesions ventilated and avoid friction.
“Think about it physiologically. If two lesions are touching each other, that could cause pain. We do recommend if our patients are alone to let the air hit their wounds as much as possible. That will help dry them out, and that does help quite a bit,” he said. “But while they may get some relief from that, I don’t know if I could lay in that position for a very long period of time.”
There’s one intervention folks are discussing online that you should definitely not do. Because these are fluid-filled lesions that resemble pimples or boils, some people are trying to extract the fluid with tweezers or needles. This so-called remedy was the one that both medical experts were most passionately against.
“No! Don’t do that. That’s like performing surgery on yourself. You can potentially contaminate your lesions with bacteria. Then, you’re going to need antibiotics,” Camins said.
“And on top of that, the fluid contains the most virus, so you’re really exposing that to other areas of skin that might not have a lesion on it,” Nardelli said. “Terrible idea.”
Before checking himself into the hospital, Marco tried a few times to numb the painful lesion under his tongue with Chloraseptic spray, an over-the-counter product designed to ease sore throats and other mouth pain. The product contains phenol, which is not advised to be used on deep wounds or serious burns.
For Marco, it seemed to irritate the area. “It took me a few times to connect the two, but I realized that every time I sprayed it, I got this weird sensation in my salivary gland or my lymph node,” he said. “And my lymph node under my jaw would be so inflamed that you could see it.”
Camins advises anyone with oral monkeypox symptoms to check product labels for anything that might aggravate the lesions.
“Oral products can potentially contain alcohol or something else that you don’t want on an open wound,” Camins said. “Look at what the solution is. Look up the ingredients. If there’s something like alcohol, it’s going to sting!”
Nardelli said his clinic’s patients have found relief with a tried-and-true solution that can be prescribed by doctors for people who have had oral thrush, hand-foot-and-mouth disease, or a tonsillectomy.
It’s called magic swizzle, or magic mouthwash — a mixture that can vary, but often contains an antacid, like Maalox; an antihistamine, like Benadryl; and a numbing agent, like liquid lidocaine. It’s often created by a compounding pharmacy based on a doctor’s prescription, and you use it to rinse your mouth before spitting it out.
“We have a few patients with some pretty significant oropharyngeal lesions, and they really do find some relief with that,” he said.
When we spoke with Marco in early June, he did not want to use his last name for fear of facing some kind of stigma. However, this move to protect his anonymity didn’t prevent his friends from putting two and two together.
“They were like, ‘Gay Marco from Edmonton. That’s you, right?’” he said. “But I didn’t really care. There wasn’t a lot of stigma. I’m glad I could help just to get the message out there early.”
At first, Jeffrey also kept his diagnosis close to his vest, but then he had an epiphany.
“Everyone’s talking about COVID all the time, posting their test results to social media and whatever. Why should this be any different? Because it can be transmitted through sex? Sex is already stigmatized enough for the gay community,” he said. “Something just clicked, and I was like, ‘Fuck stigma. Fuck shame. I’m going to talk about it if I want to talk about it.’”
He has now told all of his friends and even his coworkers. One of them even flew in from Indiana to cover an event because he wasn’t able to be there.
“They were all so sympathetic,” he said.
And Rahul has been open with his community from the very beginning. He lives alone, and as he’s unable to leave his apartment, he has really relied on the support of others to get through this time.
“I have to stay isolated, and of course, I can’t meet anyone or go get anything,” he said. “But you know, the best part of this has been seeing that I have a really good circle of friends. They have helped me with so much, groceries and meals, everything.” ●
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