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7 Fibromyalgia Experts Discuss the Covid-19 Vaccine

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Covid-19 vaccine and fibromyalgia

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. Daniel Clauw

Dr. Dan Clauw

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 Cohen

Dr. Steven Cohen

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. Ginevra Liptan

Dr. Ginevra Liptan

Dr. Ginevra Liptan, medical director, Frida Center for Fibromyalgia, and author of “The FibroManual” and “The Fibro Food Formula,” and fellow fibro warrior

(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

Dr. Andrew David Shiller

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

Dr. Jacob Teitelbaum

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

Dr. Fred Wolfe

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

Dr. Bruce Gillis

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.)

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By Donna Gregory Burch

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

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21 thoughts on “7 Fibromyalgia Experts Discuss the Covid-19 Vaccine”

  1. Joann says:

    I’ve had fibromyalgia for years. I’m finally learning how to manage it. I was diagnosed with lyme and got a second opinion. Only to find out the results was a false negative. Grrrrr. My only concern about taking the vaccine. Moderna is the new kid on the block and I’m not comfortable taking two shots. I would like to take Pfizer since it’s been determined that you only need one dosage. I’m not comfortable taking the Johnson and Johnson vaccine due to their previous class action suit due to the talcum powder. I know a 27 years young woman who died from the use of the powder. My doctor is telling me I have no other choice. I work with children and would like to protected. But! I don’t like not taking what I feel comfortable taking . Help!

  2. Alison Crowden says:

    I have fibromyalgia from head to toe. It affects everything.
    I have had the vaccine and had no ill effects from it at all.

  3. Paula says:

    I had my jab last week I was in bed with a flare up for 3 days worse one I’ve ever had. I still want the 2nd one because the alternative is worse

  4. Mary Beth Grabon says:

    I’ve had no problems since receiving both injections of the COVID Moderna vaccine. I’m 69 yrs old, female, with obesity and controlled hypertension in addition to fibromyalgia. FYI.

  5. Sharon says:

    It seems that no one can answer the question, if you’ve already had covid do you still need the vaccine?
    One more… If you’ve already had covrd why do you need to wear a mask? Also if you get the vaccine why would you need to wear a mask?

  6. noreen furlong says:

    Side effects may not show for a few years,,and that is the case with everyone who gets the vaccine,if we don’t take it ,we can’t travel, and if we do we are probably doomed ,so we can’t win

  7. Kathleen Malloy Angelo says:

    I’m 58.9 years old. Diagnosed with fibromyalgia 20 years ago. I got the 2nd Pfizer vaccine yesterday. (The first was a breeze- no symptoms) Today I am having a fibromyalgia flare that is getting progressively worse. Chills, sore muscles, sore throat, headache and fibro-fog. My skin feels like I got a bad sunburn. Ya know, it’s a typical fibro flare. I’m hoping i sleep it off. I have no regrets. I’d rather have temporary mild symptoms than being sick for days

  8. Nancy N Ray says:

    I’ve had both shot of the Moderna vaccine. After two full days of side effects, I seemed to get back to normal. I’ve had my fibromyalgia symptoms under control for years using lots of supplements recommended here. But a week after my second dose, I was hit by bad body pain. I ache all over like I used to do. At first I thought it was arthritis, but then I realized I still had fibromyalgia and I think it’s back. So far, that’s the only symptom of fibromyalgia that has returned. No fibro fog – yet.

  9. Shannon Close says:

    has anyone taken the astrazeneca and how did they react from that vaccine?

  10. elaine bennie says:

    I’ve had Fibro for 35 years accompanied by migraines for 25. I had my first pfiser and had a terrible flare up that has lasted for 2 weeks and counting. my physiotherapist put in many intramuscular needles that helped some. I only hope the second will not be as bad. I should say that I am allergic or have negative results to all fibro meds so am only able to take T3’s for the pain.

  11. Judy says:

    I was diagnosed with fibro 8 years ago. I have had the two Pfizer shots and had a very bad reaction to the second shot. I was in bed for three days. My concern is that the arm that I received the vaccine in is still hurting after three weeks. The pain has traveled up to my neck and is excruciating. I’m doing PT but have found no relief. I’m just curious if anyone is having this happen to them. Thanks for reading.

  12. Bonnie says:

    i got the flu shot and my problems are still bad and that was in the beginning when flu shots came out so yeah i think i will pass and take vitamins and zinc and elderberry

  13. Deb says:

    I am 64 and have had Fibro for over 30 years. I had both the The Moderna vaccines. I had a sore arm after the first vac and after the 2nd I had mild aches and chills that didn’t last more then a day, however, after a couple weeks I started feeling terrible my joints hurt and I ache all over it’s been over 4 wks and I still feel like I Am in a full blown flare up that just won’t go away. Pain relievers are not helping. I was wondering if anyone else is experiencing this.

  14. Patty Ryan says:

    Yes, worst fibro in 40 years, haven’t had a bad flair in 20 years, like I am starting all over with treatment. Wish I had an idea of what to do and what to ask my doctor for to help.

  15. Colt says:

    Completely bedridden following vaccine and wondeting if it hasn’t completely ruined me.

  16. Judy says:

    I have Fibro/Chronic Lyme Disease. I had Covid in December and it was like the flu for me. I also had both Pfizer vaccines and am experiencing horrific all-over body pain for three days now. I was glaring after the first shot but this second one has been awful.

  17. Jill says:

    I’m 82 and have had fibromyalgia for 30+ years. I got the Pfizer shots in late February ’21. I had a severe 4-day flare following the first shot. But the second shot only gave me a sore arm at the shot site. I’m thrilled to have gotten the shots; now I can see my children, grandchildren and my new great grandchild. To me, that makes up for any problems associated with getting the shots!
    [A side note: My fibromyalgia was very severe for the first few years I had it. It has improved significantly since 2000 when a doc suggested that I try taking Effexor, an SNRI (serotonin norepinephrine reuptake inhibitor). It is great at controlling the pain component of my fibromyalgia. Doesn’t alleviate the other components, but holding down the pain has been a God-send.]

  18. Sloane Atkinson says:

    Following my 2nd Moderna vaccine on 3/1/21, I have been in severe pain nearly every day since then! I am 77 years old, have had Fibromyalgia (manageable) for years. I have had severe sciatica, groin pain (first one side, then the other) radiating down inside of leg, No pain meds have touched my pain, nor heat, nor ice. Fatigue. I can barely walk. Pain now awakens me several times a night. Can’t seem to think/focus/concentrate by day. I NEVER in life have had a flu shot! I do not drink/smoke/use drugs, – exercise & am normal weight. Pleased to find this site so that I can stop having all these medical tests that ALL return as normal! Of course – I have Fibromyalgia and the vaccine is trying to cure it. If I have to endure this for the rest of my life, I will wear 3 masks and always stay home rather than risk getting any other vaccines!

  19. Jeannah says:

    I wanted to reply to elaine bennie from April 20, 2021 but the reply function wouldn’t work for me. I came here to see if anyone with fibromyalgia was experiencing any worsening of symptoms longer than a few days other than me and I see that they are. My experience pretty much mirrors Elaine’s. I’ve had fibromyalgia for 23 years and migraines for 13. I’ve pretty much had my fibro “manageable” enough so I could still work a desk job, but, my employment was terminated on April 30th so I was sick for about 10 days after that just due to the stress. May 12th I got my first Pfizer shot and really have not been well since. The day after the shot, I felt like the life had been sucked out of me, literally could barely move, then it was like the reaction had to work it’s way through my entire system, I had increased body aches, then gastro issues then finally a headache on the 7th day (never got a fever) but felt like a “flu” reaction or “fibro flare”, I had an ok 2 days but then started again with mild to moderate aches, gastro symptoms and headaches. Bad part is, I need to get a job! but how can I even begin feeling like this.

    I don’t want to discourage anyone from getting a vaccine as you can see many have had no issues but not the case for all of us. I’m due for my 2nd one on June 2nd and I’m really torn about whether to get it or not, I can’t afford to feel any worse. Thanks to everyone for sharing!

  20. Lori Ferris Abbott says:

    Has any one experienced a remission from their symptoms following covid vaccination? I always do better in spring and summer anyway but this reprieve feels like a gift.

  21. Jack says:

    Male, 33, first Psizer dose has flaired me up first time in 2 years really. Usually managed my symptons with HRT due to Primary Hypogonadism.
    3 weeks down still got the fibro flair.
    Going in for the 2nd jab today and scared as hell… im poor and missing work is terrible for many reasons.
    Good luck to all through this conundrum.
    Will report back

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