Need for COVID-19 vaccines create dilemma for fibromyalgia and chronic fatigue syndrome patients

LOS ANGELES (KABC) -- What if you had a condition where medications and vaccines have the potential to trigger long periods of debilitation? The need for COVID-19 vaccines has created quite a dilemma for these patients.

Fibromyalgia often makes 73-year-old Nancy Ries feel invisible.

"People don't believe you because it's nothing you can see or measure," she said.

The chronic disorder, which can cause pain, fatigue and sleep loss makes Nancy think twice about everything, including the COVID-19 vaccines.

"I said 'I have to do this or I'm just going to die,'" she said. "I want to see my grandson grow up."

Nancy did well with her first shot, but the next one caused a long painful episode.

"The second shot was awful," she said. "I was not myself, meaning I didn't feel well for about 10 months."

Doctors couldn't explain why. The lack of answers made her feel even more invisible.

"I think they don't have all the information about people like me."

"Patients with fibromyalgia and chronic fatigue syndrome represent a vulnerable patient population as it relates to vaccines," said Dr. Elizabeth Volkmann.

A UCLA rheumatologist. Dr. Volkmann says the first two shots are designed to be close together to produce an immune response. But on rare occasions, in someone with an auto-immune or immune system disorder, it can trigger a flare-up.

"We typically find that that second dose that was given three to four weeks later, is the one that really does it in terms of causing more inflammation," Volkmann said. "The boosters seem to be better tolerated because they're spaced out more."

That's what happened to Nancy. She tolerated her booster quite well.

So, knowing the vaccine could cause flare-ups in patients with fibromyalgia, CFS, Lupus, vasculitis, rheumatoid arthritis and other conditions, Dr. Volkmann offers this advice: make sure you sleep and eat well before you get a shot and schedule time to rest afterwards.

"If you do this, I think that you can, you know, easily recover from getting this vaccine and it's far better again than getting the COVID infection," Volkmann said.

Nancy is getting ready to get her second booster.

"If I had to do it all over again, I would do the same thing because we have to be protected," she said.