Last updated: Sep 24, 2009
Jessica Capelle, a 35-year-old part-time lawyer from Houston, wants to get a flu shot this year. But as her fibromyalgia has worsened over time, she says she's become more sensitive to vaccinesa side effect often reported by people with chronic pain.
Based on anecdotal evidence, it does seem that vaccines, for influenza or otherwise, could temporarily increase or trigger fibromyalgia symptoms. Seasonal flu shots are made from inactivated (dead) viruses, which could theoretically trigger flu-like symptoms or allergic reactions. (Another type of flu vaccine, administered through a nasal spray, is made from live, weakened influenza viruses and is not recommended for people with underlying medical conditions.)
Since there is little formal research backing these experiences, however, doctors' recommendations vary almost as much as patients' opinions. While the Centers for Disease Control and Prevention states that you cannot catch the flu from a vaccine, it does note that minor side effects from the shot can include soreness at the injection site, aches, and a low-grade feverand that's in perfectly healthy people.
Added swine flu concern
There are even more questions to be answered this year, thanks to the outbreak of the H1N1 influenza virus, commonly referred to as swine flu. Two vaccines for swine flua nasal spray that contains weakened virus and a shot that contains inactivated viruswere approved in September, but skepticism and worry about such new vaccines may prevent people from taking advantage of them.
Despite potential complications, fibromyalgia patients should consider getting both vaccinations, says Jacob Teitelbaum, MD, the medical director of the Fibromyalgia and Fatigue Centers, which are located throughout the United States. "People with severe chronic illnesses that put them more at risk [for dangerous complications of the flu] are more likely to get benefit than harm from the vaccine," he says.
But that doesn't mean fibromyalgia patients must get either vaccine. The decision for many, like Capelle, to vaccinate or not to vaccinate can be a frustrating toss-up. "The last three times I've gotten a flu shot, I ended up in bed for three weeks just from the shot," she says. "Last year I didn't get one and got the flu."
Who should get vaccinated?
It's hard to say, even for experts. "If you feel like getting the shot, if you're the type who catches everything, or if you find vaccines have been well-tolerated in the past, it's not a big deal; go get it," Dr. Teitelbaum says. "If past vaccines have knocked you for a loop, or your gut feeling is you don't feel comfortable, don't feel like you have to get it."
Indeed, some fibromyalgia patients tolerate shots just fine. Lavila Weckwerth, of Watervliet, Mich., has gotten a seasonal flu shot for the past seven yearsdespite being diagnosed with fibromyalgia three years agoand has never noticed any side effects. Weckwerth works in a hospital and knows she's at increased risk of getting sick; however, when it comes to H1N1, she's uncomfortable with the new vaccine's lack of testing and doesn't plan on getting it unless it's required by her job.
Andrea Nixon, of Pahrump, Nev., on the other hand, has never received a flu shot (and luckily has never gotten the flu) and does not plan on getting one.
"Earlier this year I was given a B-12 shot [to help with fibromyalgia and chronic fatigue symptoms]; it nearly paralyzed my left arm for six months," says Nixon, who was diagnosed with fibromyalgia in 2006. "Before being diagnosed, I was taking the Depo-Provera injection when numerous debilitating symptoms began occurring. So needless to say, I'm not much into receiving injections of any type!"
Capelle, who says she had the flu, three colds, and five sinus infections just this past summer, may simply be more susceptible to viruses, and therefore a better candidate for vaccination. In addition to evaluating your susceptibility to the flu, also consider your risk of exposure to the virus as you make your decision to get vaccinated. If you don't spend much time around other people, you may not come into contact with the virus. But if you are in frequent contact with children or sick individuals, like nurses or teachers are, you are probably at increased risk.
What's worse, flu or fibro?
Many patients are hesitant to get the vaccine in fear of bad fibro flare-ups. When deciding whether to get vaccinated, consider past flare-ups in comparison to past bouts with the flu, advises Dr. Teitelbaum.
"How your body has reacted in the past is the best predictor of how it'll react in the future," he explains. If a past vaccine triggered severe symptoms, maybe you'd be better off with a mild case of the flu.
In fact, Dr. Teitelbaum has observed that some patients actually feel a lessening of their fibromyalgia symptoms when they have the flu. "I've had people come to me and say, 'The only days that I've felt half-decent in the last eight years are when I've had the flu or some other virus,'" he says.
Although the flu's effects on fibro are nearly impossible to quantify, Dr. Teitelbaum says, doctors believe that when the virus stimulates the immune system, it naturally improves other immune-system conditions, including fibromyalgia.
Others, however, would take a vaccine's side effects over the flu any day. "I decided to get a flu vaccination this year, and I also plan to get the H1N1 vaccination, despite the side effects," says Deborah J. Norris, of Glendale, Ariz. "With [fibromyalgia], my immune system is impaired, and illness hits harder and takes longer to recover from."
If you've never had a flu shot before, or never even had the flu, you won't have any measure for comparison. For these rare cases, Dr. Teitelbaum says he would question why you want to start with vaccinations now. If it's because of the panic surrounding the swine flu, he recommends looking at the facts: In the United States, seasonal flu kills tens of thousands more people every year than swine flu has so far in 2009.
Instead of putting your faith in the new H1N1 vaccine, he recommends getting a regular seasonal vaccineat least at first. Although the swine-flu shot has successfully made it through clinical trials, has been approved by the Food and Drug Administration, and has been deemed safe for people with weakened immune systems, its large-scale distribution hasn't yet been evaluated. "This is a whole new strain, and no one knows what the reactions are," Dr. Teitelbaum says. "Why not wait and start with something a little more proven?"
Protect yourself, shot or not
In the meantime, be sure to take the necessary precautions against the fluand fibro. Common stressors that trigger fibromyalgia flare-upsincluding cold or damp weather, poor sleep, fatigue, physical or emotional stress, and overexertioncan also leave you more susceptible to the flu.
Fibromyalgia doctors recommend avoiding these triggers whenever possible and reducing their effects by lowering stress and improving sleep habits. Dr. Teitelbaum also recommends washing your hands, staying hydrated, and adding extra vitamin C and zinc to your diet to help boost immunity.