Is there realistic help for “long Covid victims,” or are they destined to continue stumbling through their days in a haze?

While Covid is just an unpleasant memory for some, others continue suffering from symptoms such as extreme fatigue, shortness of breath, brain fog, abdominal pain, heart palpitations and other debilitating ailments for months after the disease has officially disappeared. Is there realistic help for these “long Covid victims,” or are they destined to continue stumbling through their days in a haze?

Thirty-eight year old Adina Blum* from New Milford, New Jersey, definitely didn’t find COVID-19 pleasant, but it wasn’t horrific, either. At the end of March 2020, she caught Covid from a coworker and tested positive five days after the onset of symptoms.

“I had no fever, just aches, fatigue, a runny nose and cough, and shortness of breath,” she says. She lost her sense of smell and taste and was under the weather for three or four weeks.

She tried returning to work a month later, at the end of April, but after just one day on the job, she felt awful and achy all over. When the symptoms persisted, she was forced to take medical leave from her job. Her school-age children were home, and her husband, who works in the medical field, wasn’t usually available, so she didn’t get much respite. Adina found herself deeply exhausted and suffering from brain fog and neuropathy (tingling and shooting pains in the feet). A doctor ran blood tests and found her liver enzyme levels had shot way up, although an ultrasound of the liver didn’t find any abnormalities. By June she’d consulted a neurologist for the disturbing brain fog and neuropathy.

“At the beginning, you feel you must be going crazy,” Adina says. “But these symptoms are very real.”

A nurse by profession, she works at Mount Sinai Hospital, which has a clinic for “long Covid” sufferers. She booked herself an appointment, and providers there gave her medication for the neuropathy, the brain fog, and the increased anxiety she felt.

“It was very validating to speak to the doctors there, and to join social media groups for people dealing with the same symptoms,” she says.

By the fall she was starting to feel better, although taking the Covid vaccine in December and January temporarily exacerbated her symptoms again. Last summer, when she caught the Delta variant, her body aches returned with abdominal pain and heart palpitations, and she was put on steroids for severe trigeminal nerve pain. Her elevated anxiety levels have persisted over the past two years, and are aggravated when she can’t find a word or feels her brain is abnormally slow. She still takes medication for the anxiety and brain fog.

“I feel like I traded my health for a pillbox,” she says. “I’m 38 years old, and I take nine pills every day.”

While she feels somewhat more functional this summer, two years later, she’s still abnormally tired: “By four o’clock every day, I need to collapse for a while.”

Adina’s story is far from unique. When one of my own adult children began complaining of constant fatigue and aches, even after sleeping ten or twelve hours, I privately worried that maybe she was depressed. She thought maybe she had mono. After going through blood work and ruling out mono and other possibilities, her doctor diagnosed long Covid (she’d had Covid twice, albeit relatively mild cases).

She’s slowly getting better, but the condition makes it a challenge to take care of her young children, and she’s frustrated that she still needs so many hours of rest and can never overwork without suffering a setback.

“I used to be the Energizer Bunny” claims Chani, a nurse. “I worked, I was involved with my community, I took care of my family. Now I constantly feel like I’m not a good enough wife and a bad mother. I’m just no fun anymore, I have no energy. I can’t go to simchahs anymore because they’re too noisy. It took me a week to recover from a recent simchah. I don’t drive long distances because I’m afraid I’ll suddenly feel too weak. I can only work on a very part time basis.

“I look fine on the outside, but I can barely make it to the end of the day.”