To vaccinate or not to vaccinate?
That’s the question many in the fibromyalgia community have been asking since the U.S. Food and Drug Administration approved the first two COVID-19 vaccines last December.
Vaccination is always a controversial topic among those with fibromyalgia, but there’s even more debate over the COVID-19 vaccines than usual because of the deadliness of the virus and the swift speed in which these vaccines were introduced to the public.
Obviously, vaccination is always a personal choice, but it’s best to make an informed decision, so ProHealth reached out to several fibromyalgia specialists and asked, “What are you advising fibro patients regarding the COVID-19 vaccines?”
Below are their answers.
Dr. Dan Clauw, director, Chronic Pain and Fatigue Research Center, University of Michigan
“Yes, individuals with fibromyalgia should get a COVID vaccine when this is made available to them. There is no reason to think that the vaccine would be less safe or effective in individuals with fibromyalgia, so just as for nearly everyone in the population, a vaccine offers the best protection against COVID.
“But individuals with fibromyalgia would be more likely to have a post-COVID syndrome, which looks very similar to fibromyalgia, giving them additional reason to not get the COVID infection.”
Dr. Steven P. Cohen, chief of pain medicine at Johns Hopkins, and professor of anesthesiology and critical care medicine, neurology, physical medicine and rehabilitation, and psychiatry at Johns Hopkins University
“There’s no evidence that the [COVID-19 vaccine] causes infection, but it does cause symptoms in some people. I would encourage people to get it. Probably between 10-15% of people who get sick are going to have prolonged symptoms that don’t go away. … I would say that the risk of getting COVID in somebody with fibromyalgia and having worsening symptoms is much greater than the risk of having a vaccine.
(Note: Dr. Liptan has a unique understanding of fibromyalgia. In addition to being a fibromyalgia specialist, she lives with the condition as well.)
“Many of my fibromyalgia patients have expressed reservations around getting the COVID-19 vaccine. Some their worries stem from prior bad experiences after flu vaccinations. Many of us, myself included, get huge fibromyalgia flares after flu shots and worry about a more severe flare from the COVID-19 vaccine. I am definitely not looking forward to that experience, but to me it seems that a flare that is temporary from a vaccine is better than the very serious threat from this disease.
“As I wrote early in the pandemic, in my opinion people with fibromyalgia are at higher risk of developing more severe COVID-19 disease if infected. And if we do get COVID-19, I think we are at higher risk of becoming ‘long haulers’ who experience prolonged symptoms of fatigue, weakness and brain fog. To me a vaccination is worth it if it can lower my chance of dying from COVID or becoming a long hauler.
“Since this vaccine uses an entirely new mechanism and was fast-tracked to market, we don’t know about potential long-term negative side effects, which is a valid concern. The good news is that early safety and efficacy data is really good, and I think this vaccine is a risk we need to take to end this pandemic.”
Dr. Andrew David Shiller, private practice and telemedicine, Jerusalem, Israel
“Many of my patients with fibromyalgia, fatigue and other chronic syndromes are asking whether the COVID-19 vaccines are safe and effective for them. Unfortunately, we don’t have any data to definitively answer that question. We don’t even know if people with fibro and fatigue are more likely to have severe illness. We can guess that, given the immune dysregulation present in many people with fibro/fatigue, they are probably prone to having a worse case and that getting COVID-19 would also flare up their fibro symptoms, but it’s also possible the vaccine will do that.
“Like many things in medicine, we have to make decisions with incomplete data, and it comes down to a risk/benefit analysis based on what we know. What do we know? We have a vaccine that seems safe in healthy people – at least in the short term – though we don’t know long-term effects. We know there is an increased risk of a bad COVID outcome for people who have cancer, advanced age, heart disease, diabetes, obesity, chronic lung or kidney disease, smokers and pregnancy. We know the current vaccines prevented people from getting COVID disease, though I would have liked to see more data in these populations.
“All in all, it makes sense for people at high risk of bad disease to get the vaccine. Same thing for healthcare workers who are likely to be exposed to people with COVID or healthy individuals who have lots of contact with people who are at risk of bad outcomes. Without high risk, it’s a more individual decision.
“Whether you get vaccinated or not, doing general measures to help immunity and overall health is a no-brainer. That includes regular moderate exercise, stress reduction, good social connections and finding ways to cultivate emotional health. Research suggests regular intake of an appropriate amount of vitamin D and zinc are protective against viral infection. Theoretically, quercetin can help zinc get into cells and that can slow viral growth. It’s also a good idea to eat a diet low in processed food and simple carbohydrates, and high in nutrient-dense foods, lean protein and lots of fruits and vegetables, unless another medical condition makes it a bad idea.”
Dr. Jacob Teitelbaum, board-certified internist, author of multiple books including the newly updated “From Fatigued to Fantastic” and creator of the SHINE protocol for fibromyalgia and chronic fatigue syndrome
“Fortunately, we are not seeing COVID-19 being any more severe or frequent in my chronic fatigue syndrome (CFS) and fibromyalgia (FMS) population than in the general public. In fact, the main problem is that it is triggering postviral CFS in about 10% of healthy people.
“Most of the people I’ve seen in my practice who had COVID-19 have sailed through it. The one case where it severely flared their fibromyalgia responded very well to simply optimizing their SHINE protocol treatment. This means that the vaccine is no more important in CFS/FMS than in anybody else.
“So my recommendation? In those near or over 60 years of age, or those with hypertension, diabetes or obesity, I do recommend they take the vaccine. Otherwise, it’s essentially a matter of personal preference.
“In those who have a history of having bad reactions to vaccines, I am holding off on recommending them. Also, in women who are still looking to have more children, I am recommending holding off on the vaccine until research looks at whether the spike protein antibody interacts with placental protein.
“I plan to get the vaccine myself in about three months, after at least a million people have been guinea pigs.”
Dr. Fred Wolfe, clinical professor of medicine, University of Kansas School of Medicine, and founder/co-director of Forward – The National Databank for Rheumatic Diseases
“People with fibromyalgia should certainly receive a COVID-19 vaccination, as it can be life-saving. The risk of side effects, both mild and severe, is not different in those with and those without fibromyalgia. Do it as soon as possible.”
Dr. Bruce Gillis, CEO, EpicGenetics
“Unless you have a contraindication given to you by your healthcare professional, get the vaccine. Unequivocally, get the vaccine. I would not hesitate. It’s very, very important.”