Those of us with fibromyalgia and chronic fatigue syndrome have enough to think about when it comes to the regular seasonal flu shot. Now the swine flu (H1N1) is adding a whole new set of problems.
With anti-vaccine opinions abounding, concerns about this vaccine being fast-tracked, and the fact that we're officially in the "high risk" group, it's enough to make any fogged-in brain shut down. Fortunately, since I'm far from an expert on vaccines and other flu-related issues, I have several About.com colleagues who really know their stuff. I've compiled some of their articles to help you get a handle on the important information and make an informed decision:
- H1N1 High-Risk Populations
- Thimerosal, Mercury & the H1N1 Vaccine
- What is an Adjuvant?
- Your Complete Guide to Swine Flu
Dr. Charles Lapp, a respected fibromyalgia/chronic fatigue syndrome specialist, recommends against the vaccine. Here's why: Dr. Lapp's Vaccine Opinion.
Because of the risk to both me and my children, I've decided to get the H1N1 vaccine even though I never get the seasonal flu vaccine. I'm a little nervous about the vaccine itself and the possible flare it could cause, but I'm more concerned about the flu itself.
Are you more concerned about the flu or the vaccine? Are you planning to be vaccinated? Take the poll, and leave your comment below!
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I am delighted to be on the top of the list and will be getting my shot as soon as they make it to Florida. To me, the risk abated is better than the risk taken. I know I got the flu a few years ago and missed 3 weeks of work and ended up with pneumonia. This was when I first went on Methotrexate and didn’t know my bodies reaction to viruses. Because I’m on two immune system suppresants for Rheumatoid Arthritis (Humira and Methotrexate), I qualify for the earliest release of the vaccine and will be taking them up on the offer.
If those British researchers found that one immune system gene was overactive in chronic fatigue patients, I wonder whether immune system enhancement is such a good idea–if we have our immune systems perpetually active, maybe a heavy immune suppressant (under very careful watch) could be some kind of trigger to shake us out of the perpetual battle? (Also an idea coming from a non-medical-professional…)
Autoimmune diseases are caused by an immune system that is what one might call ‘out of whack’. Therefore you need to boost your endorphins to regulate/modulate your immune system in order for your body to be able to handle all sorts of diseases. Taking immunosuppressants in my opinion is not a great idea. Why would anyone want to suppress their immune system when they have these terrible diseases to deal with? We all need healthy immune systems. If you’re taking immunosuppressants I believe you will be leaving yourself wide open for all sorts of bugs going around. In the UK, people with healthy immune systems are being advised against taking the vaccine. LDN has helped me get my immune system back on track and I hope long may it continue.
Hello everyone
I live in the UK, have FM and have had swine flu. Initially I wasn’t sure if this was another variation on a typical FM day of tiredness, aches, headaches and so on. But my whole household came down with the same thing at the same time when there were many cases in our town. My symptoms were mild – very VERY tired, no appetite, unable to concentrate, and a strong sensation that something very different was going on in my body which is hard to explain. I took Tamiflu, which made no difference to anything, slept a lot, stayed in, and eventually it passed, with no incremental pain flare ups.
I would be thoughtful about the vaccine unless you truly felt that the symtoms could exacerbate your problems to an unacceptable level. The British experience, in almost every case (of which there have been thousands), is that it’s not much more than a bad cold. We have enough to worry about without this as well.
All best and stay well
Sally
Brett,
It does seem logical that if the immune system is stuck in overdrive, you’d want to calm it down. That’s actually how a lot of autoimmune conditions are treated, so your thought certainly isn’t out of left field.
With ME/CFS, though, it appears to be more complicated. According to Dr. Lapp, one “channel” of the immune system is underactive, while the other is overactive. Suppressing the entire thing likely wouldn’t help — especially if there are active, hard-to-detect infections going on, which some researchers say there are in certain subgroups. If you suppressed the overactive channel, what would would you be letting out of the box, so to speak?
With fibromyalgia, immune-system involvement is still fairly unknown. In some subgroups, especially post-viral cases, it may have some features in common with ME/CFS, but we just don’t know.
An interesting observation, while we’re on the subject — for my first couple of fibro-years, I didn’t catch the viral stuff that went around. I’d always caught EVERYTHING before that, so it was a big change. Now that I’m feeling a lot better, I’m back to catching everything. I can’t say exactly what did it, but for some reason my immune system seems to be back where it used to be.
My pain management doc has recommended that I get both the seasonal AND H1N1 vaccines, due to multiple bouts of bronchitis and an almost deadly case of pneumonia in 1982. I’ve never gotten the seasonal flu vaccine before, but over the past few years, I’ve gotten severe bronchitis after having flu that’s gotten increasingly worse year by year to the point last fall where it took four different antibiotics (and six weeks of being sick) to control it. At that time I was also diagnosed with asthma. I am newly diagnosed with fibro (May 2009), so I am just not willing to take any chances. Even if I still get flu, hopefully it will minimize the damage, so to speak, because last year’s bout nearly had me in the hospital, and frankly, they’re running out of antibiotics to treat the bronchitis I always end up with. Plus what I now know are fibro flares are unbearable when I’m sick.
I have severe asthma, so there’s no question.
I’ve gotten the regular flu shot already, and the only effect I had was a feeling of having a slight fever and a lot of tenderness at the injection site.
I just don’t want to think about swine flu + asthma + fibromyalgia.
I would say avoid this vaccine at all cost and any other! I had 5 flu jabs in a five year period and then I developed chronic fatigue syndrome which is so much worse than the flu. Only then did I find out that flu jabs can cause CFS. Thanks vaccine industry for letting me know (he says with sarcasm). The vaccine industry is keen to give you all the pros, but you never hear the cons being discussed. There is so much vaccine-damage out there I have discovered, but the deeply compromised medical industry is more concerned with profits and jobs to do anything about it or to tell the truth about shots.
I have always been boot-and-braces pro-vaccination. This September I arranged to get a flu jab as I am in a new job and cannot afford to take three weeks off if I get ill.
A few days after the jab I developed crushing chest pains, diarrhoea, joint pain,severe fatigue, balance problems, serious muscle weakness, tenderness all over and cognitive problems. The worst FM flare I have ever had! I think it is beginning to die down now after about ten weeks of misery. I’m open minded as to the cause of the flare, but I think I’ll skip the jab next year anyway…