Flu Shot or Not When You Have Fibromyalgia or ME/CFS?
Flu clinics are going on, and it's time again for those of us with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) to decide whether to get vaccinated.
The issue is that some FMS & ME/CFS experts say they frequently see relapses or flares in their patients who do get a shot. On the other hand, some doctors point out that when we do get the flu, we tend to get it worse - we're sicker, and for longer.
If you've had flu shots before and have done OK with them, or if you have another serious illness (especially heart disease, emphysema or diabetes), experts say you should go ahead and get one. If not, however, you've got some things to consider.
- Do you tend to be prone to the flu?
- What's your exposure risk, and the exposure risk of your family or others you see often
- Which risk is greater to you - a vaccination-related flare, or the possibility of getting the flu?
Think about this issue, and take it up with your doctor, so you can make the decision that's right for you. And if you even think you're coming down with the flu, get into your doctor ASAP to get an antiviral medication - they can cut the length and severity of the flu, but only if you take them within 72 hours of getting sick.
I'm not planning to get one, even though I do have a first grader who brings home every bug imaginable. I haven't had the flu in forever, and I've never had a bad case of it. (Of course, if I do get it this year, I'll probably regret my decision.)
What do you think? Do you generally get flu shots? How do you tolerate them? Will you get one this year? Have you had the flu on top of FMS or ME/CFS? Share your stories here or in our Fibromyalgia & Chronic Fatigue Syndrome community forum (under Newsletter & Blog Topics).
Suggested Reading:
- CDC: Preventing the Flu
- Know the Symptoms of the Flu
- Drug Treatments for Fibromyalgia & ME/CFS
Photo © Paul Tearle/Getty Images
Comments
I appreciated your comments on whether or not to have a flu shot. I have one every year, and some years I get still the late round of flu that comes after the benefits of the shot have waned. Having the flu AND fibro isn’t fun, but the aches and pains are hard to distinguish between the two.
The reasons for getting a flu shot are easy for me. I ride public transit. I am over 60. I have fibro and a compromised immune system with chemical sensitivities. (Your advice to start on anti-virals early on is one I’ll take up with my doctor. Sounds reasonable!) My husband has COPD, so any risk I take I share with him. He works with people who have small children, and they bring everything viral to work with them. We’d be very ill if we didn’t take all of the precautions we could.
I’d rather spend a couple of days in a fibro slide, which I know will not last forever, than to spend 10 days sick with flu, weakening my immune system even further. That just makes sense to me. It’s sort of like having learned to pace myself for certain activities. If I have a flu shot and experience a slide, it’s just part of the deal. Side effects from the flu can linger for weeks, which I can’t afford.
This has really become a question of importance to me as I’ve never been prone to the flu and it seems I’m on so many meds for CFS over the past decade I decided not to take a chance with a shot – really concerned about a nasty result.
However, this past January I came down with the flu and I didn’t know if I was going to make it. It’s also very difficult to get to a doctor within 72 hours as my symptoms are constant but vary over a wide spectrum of different symptoms that come and go consistently at is’s own pace. Some symptoms will disappear for a few months and then come back. It’s crazy!
The one constant ailment though is the fatigue and insomnia. I don’t think over the past decade I’ve been able to get an 8 hour night of “undisturbed” sleep. Oh I’ve been in bed for days at a time but I seem to wake up every 2-3 hours at the most.
It’s a disease I wouldn’t believe if I didn’t suffer from it myself!
I use to get it, but haven’t for years. If your immune system is poor or you have respiratory problems (COPD, Asthma, etc.) then it’s probably best to get one.
I am always hearing people say “I got the shot and had the flu anyway” or “The shot gave me the flu.” It doesn’t keep you from getting the flu…it does make the symptoms less severe.
I don’t always get a flu shot – but I did this year – can’t say I had a flare.
If I do get the flu worse – well that would be saying something.
I teach an after school program called Mad Science. I teach in elementary germ factories – umm – I mean schools.
I get the flu ofter and many other respiratory illnesses. Doc says that my fibro and allergies making my mucus membranes less intact are the culprits.
don’t Fibro – bods on the whole have a reduced immune system? Seems I don’t need large amounts of pathogens to get sick.
Thanks
Denise
I always get the flu shot on the years that I don’t get the flu prior to it coming out. For some reason, the last 3 or 4 years, I have contracted the flu just a week or 2 before I see the shot is available.
I have a hyper-active immune system and I am allergic to many of the ingredients used to make or preserve the shots. I became deathly ill with flu symptoms every time I got the shot, one time resulting in pneumonia. I stopped getting them and have not been sick with flu in decades. I prefer to take my chance with getting the flu instead of being deathly ill with every flu shot. I have to avoid all vacinations because of my severe reactions. As long as I don’t get vacinated, I basically am hardly ever sick! Now if I could just get rid of FMS and MPS I would feel great!
I’ve never connected flare or backsliding of my fibromyalgia to flu shots. My husband and I have gotten flu shots every year for ten or more years, except for the year of the vaccine shortage. Even though he had had a blood clot in his lung the previous February, and lying in bed with the flu would make another more likely, he still didn’t qualify for the vaccine. We both got the flu that year, and I just wanted to die, but he forced me to get out of bed several times a day. It seemed to last forever.
I too am trying to decide if I should or shouldn’t get one. I do agree that getting the flu would be much worse for us. I did get it 2 years ago and I seriously thought I would die. I had a 104 degree temp even rotating tylenol and ibuprophen every 2 hours. I couldn’t stop shaking. Even after I got over it I ended up with pneumonia. So maybe I should get one anyway.
In terms of treating influenza when it starts, I have found that the combination of Ribavirin and Amantadine, as antiviral drugs, are very effective, and fast in treating influenza. During a previous case of influenza across the UK, I used these antiviral drugs when I became infected, made a rapid recovery, whilst preventing a relapse of my ME. If I had not used these drugs, then many weeks of recovery in terms of my ME would have been the result.
I had my flu shot last week and get one every year. My doctor told me that getting the flu shot is realy important. I have don’t have a very good immune system anymore. That happens when you have fibro for a long time so be careful if you get sick. I rather be down a few days from the shot. I had already picked up something before my flu shot and took 2 weeks to kick that. Everybody take care out there.
The most important thing is still to take at least 100 mcg/4,000 IU of vitamin D a day and Siberian ginseng, which is extremely effective in preventing the flu. The problem is that people with CFS/ME have immune dysfunction, so the vaccination does not work as well as it works for healthy people.
I will definitely get a flu shot, but I don’t know if they really work for me because of immune dysfunction caused by CFS/ME. I’ve almost died of parainfluenza (which is supposedly milder than influenza) while I’ve been sick. Had high fever for two weeks, got three opportunistic infections and it took me five weeks to recover.
Andrew Porter: I believe this strain of flu (and most other years’ strains, too) is resistant to amantadine, and most people could never get a Rx for ribavirin.
My book “Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia” has a chapter about the effects of vaccinations in CFS/ME and fibromyalgia (referenced, like everything in the book).
I have only had one flu shot in my life. I work for a doctor and he gave it to me. I was the sickest I have ever been in my life, within hours of this shot. I suffered all weekend and called him on Monday. He told me that he had 3 of his patient whom he gave shots to in the ER over the weekend. His theroy was that the shots were, too live.’ What does this say to you??? The CDC claims that there is no live virus in these shots but I dont believe them.
Thanks for the info. I have Fibro/ CFS, along with IC and some other conditions, and I have been advised NOT to get the flu shot. I have never had one. I got very severe bronchitis a few years ago but have avoided the flu thus far.