This article was originally published on Prohealth.com. It is being republished here with permission from the editor.
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 a personal choice, but it’s best to make an informed decision, so I 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.”
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.”
(Click here to read about current contraindications for the COVID-19 vaccines.)
Dr. Ginevra Liptan, medical director, Frida Center for Fibromyalgia, and author of “The FibroManual” and “The Fibro Food Formula”
(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
(Note: Dr. Teitelbaum was diagnosed with fibromyalgia while attending medical school.)
“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.”
Now it’s your turn! Have you been vaccinated against COVID-19 yet? If so, did you experience any side effects for the vaccine or a flare of your fibromyalgia symptoms? Please share in the comments below!
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I’m Donna, a longtime newspaper reporter, health writer and chronic illness thriver! Fed Up with Fatigue provides weekly news, research, treatments and more to help you live better with fibromyalgia and/or Lyme.
post first Moderna jab I immediately was itchy and then anxious and dizzy and went out in a wheel chair. I have been dx with Fibro for at least a decade and Lyme in 2002 but was treated. That night I had hard chills and thought I’d never get out of bed again. I took some tylenol and functioned fine after that but read within 24 hours it can block the body’s natural immune response. So writing this post jab yesterday…. immediate itchiness and dizziness…. I was able to walk out under my own power. I put the house back together as I was arriving home from out of town, and went to bed. The back of my legs were sore and I thought it might have been stress held there as I had an extreme panic attack the final few miles of the trip. Today my muscles are tight and hurt more and more. I took flexaril last night and tonight. I’m definitely growing a higher and higher fever and wonder when its safe to take tylenol. My pharmacy or a nurse said I could yesterday but not ibuprofen and NSAIDS which I can’t take anyway. My first shot I didn’t feel in my arm till the next night. The second was administered painfully so it hurt from jump, opposite arm. With fibro and people reporting shingles, I am scared and wonder if I should take tylenol or wait out the fever, muscle pain, mild joint pain, muscle stiffness and fatigue. My first shot was documented on the vaccine gov site given to me with the symptoms. I will complete the series of questionnaires with the second jab to continue to contribute to the body of evidence. It is also believed i had covid in Feb/March as I had all the cardinal symptoms…loss of taste/smell, nagging cough, pneumonia and bronchitis and depended on my CPAP machine or i would’ve been to the ER. I never had a positive test per or post symptoms. Thank you
I’ve had an incredible flare up of my fibro since my first vaccine three weeks ago. Def the worst flare I’ve had in years. Not surprising, but still miserable. I, like others, felt it was likely I would become a long hauler if infected with the virus, so I decided to move ahead with it, but I def won’t be getting the second shot, at least not right away.
I got my second Pfizer shot a week ago, beginning of April. The first shot threw me into a major flare up of my Fibro. I am miserable with muscle pain in legs, arms and back. I have extreme stiffness in my hands in the morning. I have had my symptoms in check with meds and exercise for 4 years. I hope this goes away soon. Not really happy that I got the vaccine.
I’m do afraid of long haul issues. What are your thoughts on getting the Jonson and Johnson’s vaccine?
I don’t know enough about it to have an opinion yet. I’m still debating on whether to get vaccinated or not. I don’t qualify yet in Delaware so right now I’m just watching what happens w/ others. Part of me wants to get vaccinated so I won’t have to worry so much about possibly getting COVID but part of me is concerned – especially b/c I’ve seen some videos online of people who were vaccinated and are now having parkinson’s/palsy type symptoms. The news doesn’t tell us that but those videos are out there if you look for them.
As an over 30 yr FMS person, I was afraid of the potential side effects of the J&J vaccine that I was scheduled to get at noon on 3/7/21. It was at about 1pm that I rec’d the shot. I felt nothing unusual until 11:30pm that night when I got chills. Very uncomfortable, but only lasted about an hr. At about 2am, I woke up with the worst headache ever. That lasted about 3 hrs. I got up, was very weak and shaky, made myself a bowl of chicken soup, took an ibuprofen with my tramadol and went to bed. Next day, today, feel much better after about 5 hrs sleep.
Thanks for a great article, Donna!
I was also worried about this, but I decided that the risks from COVID and the potential long haul syndrome worried me much more than the side effects of the vaccine. I do understand about there being no understanding of long term side effects, but have decided that this is a safer risk than COVID. I have had my first Pfizer shot this past week and had typical reactions of sore arm, achy muscles and more fatigue for about 3 days. I’m very happy I got it though as I’m tired of being terrified of COVID.
I had the the vaccine had my second dose a month ago. I was tired. Feeling fine. Its an individual decision.
Hi Donna thank you so much for the cutting edge information you provide,
I have CFS and am being treated with Famvir for “post viral syndrome”.
I have improved with LDN, glutathione nasal spray, and a host of other supplements.
I did have my first vaccine; moderna, and a few days later suddenly had to get into bed.
I am able to do things around the house but I am prepared for a real in the butt with the second dose,
I would not have hesitated to get the vaccine since my Dr told me I would be a sure “long hauler”
Unfortunate for then but “long hauler’s” are attracting alot of attention from the best CFS doctors so I am hopeful as they look for treatments for them it will benefit us.
Meanwhile I am curious about the Imc-1 study, why wait for a combinaiton drug to be approved; I am on famvir anway why. not just add an antinflammatory?
Yes, like you said, you don’t have to wait for the IMC-1 studies. There are people who are already using Dr. Pridgen’s protocol. If you’re anywhere near Alabama or can travel, he has been using his protocol in his patients for years now.
Do you know which anti-inflammatory it is?
I received the moderna 2-shot vaccine and did not have any discernible reactions to it beyond discomfort at the injection site it’s. I realize I was very lucky compared to others in the lack of serious reactions. My husband, who does not have Fibromyalgia, also had fever and fatigue along with the injection site reactions of a hard, painful knot and hotspot surrounding it. But after a few days the symptoms disappeared. We are both over 65, I have had fibromyalgia for over 30 years. We both believe that taking the vaccine is preferable to the alternative. We did share many of the same concerns that so many others expressed earlier. But realized that the pharma companies had been developing their vaccines over many months, not in a dangerous rush. And with the turnover of the leadership of the CDC and FDA, so that actually qualified scientists were doing the evaluations, we believed that we could trust the process again.
I encourage everyone to receive the vaccine as soon as you are able. The reactions will be short-lived compared to Covid-19. And the benefit to not only our fellow Americans but the entire world will be achieved much quicker and with fewer people dying.
I have been dealing with Fibro & M.E., Szogren’s, Raynaud’s, Multiple Chemical Sensitivity, Diverticular Disease & disregulation of Circadian Rhythm & temperature control for 30+ years. I know the cruelty of “cytokine storms” from even minor insults to my body. So, which do I risk? The (possible) viral infection or the unknowns of both the risks and the benefits of a Covid vaccine? For now, I shall wait on the jab/s and keep wearing a mask, so as to not imperil others. 😷 So much for “the Golden Years.” I deeply appreciate being able to access this article, for both the Professionals’ and the Patient Warriors’ perspectives; thank you. God help us all. 🙏
I had the vaccine 4 weeks ago, at first I felt nothing but then several ours later extreme pain went from my shoulder into my neck and head, had an ice pic migraine for four days, whole body itch, extreme fatigue, stayed in bed then went into chills and felt like I had covid so got checked by now four weeks went by and time for second one. Had to cancel because I am still not feeling well and don’t want to inject another vaccine that may make me ill for another for weeks. I always react poorly to vaccines so was no surprise. I was told several times they don’t know much about side effects plus with fibro/CFS you never know how you are going to feel at the time of your scheduled appointment. I am 75 with multiple problems so felt pressured into the vaccine.
One of my concerns that I haven’t heard many people talk about are the possible interactions and/or problems with the vaccine and the medications that I currently take for the fibro. I take a number of prescriptions, has anyone done any investigation regarding how they might interact, or even become less effective with the vaccine? Just another reason that I will wait a bit to see how things go with those who take it.
Hi Nicole, no, as far as I know those types of studies have not been done. They haven’t even really studied the vaccines in people w/ underlying conditions. The people in the studies so far, according to what I’ve watched and read, were healthy people (as healthy as the average American can be, at least).
Thank you, this article is so informative..down in South Africa we currently have the J&J vaccine being administered to health workers and then frontliners, people with comorbidities will most probably only be vaccinated after winter (June) and thereafter, my concern is that it may not be J&J but anY of the others that are procured, The J&J seems to be the preferred shot for South African variants and it’s a one time shot… I administrate a lupus awareness page and the general consensus from most of the lupies are that they really fear having the shots.
I live in the Uk, am 63 have diet controlled diabetes, fibromyalgia, pulmonary fibrosis, multiple allergies including some medications and chemicals. I had a Pfizer jab two weeks ago and the only side effects were a sore arm and tiredness that lasted a couple of days. This has reduced my anxiety level. I have to wait another ten weeks or the second dose and can’t wait. Here in the uk we have seen great results in the number of deaths and serious infection and a reduction in the number of cases. I think it is the responsible thing to do for yourself and for the world.
Only by vaccinating as many people as quickly as possible will the world start to recover.
I’ve been isolating since mid March last year, live alone and can’t wait to safely get out into society again.
I just received my COVID 19 shot yesterday!
Oh my goodness I’m in so much pain. My whole
body Is so sore, ache, hard to move . My feet and hands are swollen. And they say the second one
Is more intense
I received my first Moderna vaccine 2 weeks ago & I am still not feeling well. I have Sjogrens, Fibromyalgia & CFS. My normal days are filled with pain & weakness but I was able to do a little around the house, etc. Since my shot I have been to the ER with racing heart, breathing problems & high BP. I was clear for Covid. I can hardly get out of bed in the morning. I will not be getting my 2nd dose. I cannot find any place online to take my complaints. Just praying I come out of this. I know most do not have a problem with the vaccines.
Katie, because you were seen in the emergency department your healthcare provider should have already reported your symptoms to the Centers for Disease Control (CDC) through the Vaccine Adverse Event Reporting System (VAERS). You can self report your symptoms at this site: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/vsafe.html.
What info does anyone have or know of about people who have HAD COVID and whether or not they should get the vaccine? I had it, wasn’t hospitalized but was still very sick for 3 weeks. I ALWAYS have bad reactions to the flu shot.
Yes, it is generally recommended that people who have had Covid disease still get the Covid vaccine. There are documented cases of second Covid infections; a Covid infection does not seem to give very long term immunity from getting the disease again. However, Covid disease does seem to function like the first of the two series vaccine and primes the immune system so that you may have a more significant immune response to the first vaccine dose rather than the second. You may want to consider getting the vaccine at least three months after you had the disease just so that you have less discomfort from the immune response symptoms.
Hi Donna! Hope you are well and keeping safe. Thank you for all your hard work.
Just a thought…has any connection been made between Fibromyalgia and the Herpes Virus? Can’t help but wonder if Fibro is a result of some viral or bacterial infection just as COVID-19 triggers ‘long haul’ symptoms in some and just as NTM Lung Disease triggers some Autoimmune Diseases. Would love to see doctors/specialists research this possibility if they haven’t already.
Thanks again for all you do, Donna!
Hi Jane, there’s a physician down in Alabama named Dr. Pridgen who is working on that same theory. He’s been using a drug combo of an antiviral + an anti-inflammatory w/ his fibro patients. I’ve written a couple of articles about his work … this is the latest one: https://fedupwithfatigue.com/fibromyalgia-herpes-imc-1/
The trial discussed in the article keeps getting pushed back due to delays in funding, but is supposed to happen sometime this year. He sees fibro patients if you’re anywhere near Alabama or can travel there.
Donna, I read your article on fibro patients getting COVID shot but what about Lyme patients?
Thank you for what you do,
Janzel
Hi Janzel, I haven’t written a Lyme/COVID vaccine article yet, but I’m considering doing one. Until then, here’s the opinion of Dr. Marty Ross, one of the Lyme doctors that I follow online: https://www.treatlyme.net/guide/covid-vaccine-lyme-disease
“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.”
“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.”
Trust me, said the spider to the fly…
Hi l had the vaccine,and a bit of a flare up,not too bad,but l ask is long covid .. fibromyalgia..is this what’s happened to us all sometime in the past..jean
Hi Jean, I think there are likely various reasons why people develop fibromyalgia. I am aware of a doctor in Michigan who feels strongly that some people develop fibro as a result of receiving the flu vaccine. Obviously, that’s not the case for everyone b/c I have fibro and I’ve never had the flu shot. That particular doctor does have a treatment protocol that he uses on those patients.
There are also some people w/ fibro who believe the gardasil vaccine caused their illness. I’ve heard other people cite various other vaccines as a possible cause of their symptoms. To my knowledge, there’s no evidence that vaccines cause fibro but I haven’t researched it so maybe there is evidence and I’m just not aware of it. I definitely do not discount the idea that that could happen.
“…that some people develop fibro as a result of receiving the flu vaccine. ”
Also, the contrasting agent used during MRI procedures which contains the toxin “gadolinium” needs to be looked at as a causation of fibro. It embeds in the brain, bone and tissue and is retained for many years, if not a lifetime.
gadoliniumtoxicity.com
“…some people develop fibro as a result of receiving the flu vaccine.”
The contrasting agent used in MRIs which is a toxin called gadolinium needs to be looked at as fibro causation also. It embeds in the brain, bone and tissue for many years, possibly even a lifetime and there is no antidote to remove it.
Interesting comments. For once I agree with Dr. Teitelbaum and will let the millions of injected be the Phase 3 trials that were never done, I have fibromyalgia.
There is a lot of good observational data and some studies on the use of ivermectin as a curative and a prophylactic and; that’s what I’m relying on.
I’m a physician and I live with fibromyalgia. Yesterday I received the second dose of Pfizer Comirnaty. I just had no problem with the first dose and only a few issues (headache, dizziness) today. I think that possible reactions to vaccine are better than the wild disease…
The problem is, there are no long term safety studies to know if there will be any adverse long term effects.
I’ve had fibromyalgia for 21 years. My concern is, I’m allergic to alot of medication or ingredients in medication. I want to go through vaccine but also scared that I will have a horrible reaction. In the past with just one pill of Lyrica I got a reaction of over dosing. I have also had kidney failure with medication.
Oooo this is a great point to cover, and it’s interesting getting professional doctor-led thoughts here which seem to suggest that the vaccination is definitely worth considering. I noticed the point from Dr Lipton about how many worry because of previous flu jab reactions and I actually had the worst flu experience of my life after a flu jab a couple of years ago, as did my mother the year before, making us both feel it wasn’t a coincidence.
I had my first Pfizer vaccination nearly two weeks ago and blogged about it recently to give others an idea of what they might be able to expect. The side-effects are so different for everyone but I was lucky in getting just tiredness a few hours after the jab for the rest of the day, pretty extreme tiredness but shortlived, and an achy arm. Not lifting my arm for three days was a short price to pay I think for some protection against a deadly virus. Fab post – hopefully this can give people a little more reassurance. xx