I am curious to know if any of you readers out there with CFS, Fibromyalgia, IC or another chronic illness has gotten the H1N1 vaccine. I took my son to get it because of his age and the fact that H1N1 is going around the local schools but I didn’t get it myself. I normally don’t get the seasonal flu shots either but I did get it this year just because I was already at the doctor’s office for my sinus and ear fluid issues and they said they would give me one. I have always been afraid to get the seasonal flu shot due to the fact that it can cause flares with our CFS and FM symptoms. As far as I know, I didn’t have any problems with this flu shot but I’ve been so sick from my sinuses I guess I probably wouldn’t know anyhow if the vaccine was causing me problems.
I have read different theories on whether or not it is safe for us to get the flu vaccine and/or the H1N1 vaccine and it really has to be a personal decision and your doctor should be consulted if you’re not sure. We each have to decide for ourselves whether or not we fear getting a reaction from the vaccine in the form of a flare, or whether getting the illness itself will take more of a toll on our bodies.
Personally, even though I normally don’t get the flu vaccine, I would fear getting the flu or H1N1 more than I would fear flares from the vaccine. In my own situation, getting the flu, a cold, or any type of seasonal sickness, causes total havoc with my body and it takes me an extremely long time to recover.
Have you gotten the flu vaccine or the H1N1 vaccine yet this year? Do you plan to get it? Let me know in the comments!
I am not getting either shot. I am careful, wash my hands a lot, and am not in a panic about the flu. I do have concerns over any bad effects from the vaccine on my fibro/cfs. My life is difficult enough without risking more pain and incapacitation. I’m old enough to have had the flu in the late 50’s/early 60’s that is supposed to give me some immunity. Probably children and young adults should get vaccinated since they seem to be the ones with the worst outcomes from getting the flu.
I’ve got lupus (SLE) and fibro. I get the seasonal flu shot every year. This year I got it in September. I still managed to come down with H1N1, and it was nasty. DH and DD just got mild cases. Both got secondary infections. (Seems to be the pattern here in Kentucky.) I got a full-on case of H1N1, thanks to prednisone, and I also contracted a light case of bacterial pneumonia. (Despite having had a pneumonia vaccine this spring.) It was awful. On the advice of several doctors, I got the H1N1 vaccine after the flu had run its course. The theory is that it gives one “super-immunity.” I was in the middle of a particularly bad flare when I got the flu, and I have to say, I’d rather suffer through a flare than have the flu/pneumonia combo again.
I have not gotten a flu shot in almost a decade, and plan to keep up with that habit. Every time i have gotten a flu shot (of any description), it has made me feel like death on a stick. A friend of mine with fibro, she got a flu/H1N1 shot this year, and had one of the worst flare-ups that she’s had in years.
I have, however, caught H1N1 (from a failed job interview, to add injury to insult). It was like a really bad flare – really hideous exhaustion and brain fog, feeling like i got hit by a truck, and some minor congestion. The pain lasted about a week, but the exhaustion and brain fog lasted about a month. My husband and father in law (neither of whom have fibro) also have experienced H1N1, and had similar experiences. As long as it doesn’t move into your lungs, it’s a PITA but not the end of the world; once it even thinks about going chestward, that’s when it becomes a concern, as it will very quickly develop into pneumonia.
I got the seasonal flu shot, because once I passed 50, it seemed it was a help, not harmful; the years I didn’t get it, except for one, I ended up with cold going immediately to, in order, sinus infection, bronchitis, walking pneumonia, flare up of CFS & Fibro & migraines. Actually, one year I avoided it & was glad, because the sinusitis to pneumonia cascade I got was less severe than the horrible cases of flu to pneumonia that several otherwise healthy adults got that year. I get it when I have no low grade (or other) fevers, aches, pains, or flare ups of any kind. Mostly, that’s because I never know if a flare up is a cold starting into that cascade, or a flare up & nothing else.
I got the pneumonia vaccine this year, & if you’re eligible & not in flare or sick, I do recommend it. No, it’s not going to stop every kind of pneumonia; it is for pneumococcal pneumonia variants only. There are other germs that cause pneumonia, & there is viral pneumonia. Those kinds, you might still get, but pneumococcal pneumonia is responsible for at least 60% of all pneumonias, & it is a pretty nasty bug, so you’re saving yourself at least one kind of bug.
Since your body’s immune system is, when you have these types of illnesses, busy slapping your body around most of the time, I think when you “distract” it by getting a vaccine, once it deals with the vaccine, it gets even with you for that. I know, it’s silly, but that’s how it seems, because every vaccine will cause a flare up, I think. It does for me, anyway. But when I got sick, when I was still able to work, it took me so long to recover, & the flare up lasted forever. For me, vaccine flare ups are shorter & not quite as intense.
As for H1N1 vaccine, I’m not touching it. I have my own slightly paranoid reasons, primarily, that one year the regular flu vaccine made a lot of adults who took it really, really sick, they had rushed the production because the flu bugs that started coming from east to west changed from what they’d anticipated & they’d tried to add it to the vaccine they’d already created, with limited testing; kids who got the flu shot were usually OK but adults got really sick. Kids’ immune systems have differences that might mean they do better with vaccines rushed into production than do adults. I’m in too much of a flare up to get out much, anyway, so exposure to H1N1’s probably not going to be an issue. Plus, I do a lot of handwashing,take vitamins, & keep my distance from symptomatic folks as much as possible. It’s not foolproof, but I’m hoping for the best.
One of my sisters got infected with H1N1 or more commonly known as Swine Flu. Fortunately, she did not have very high fever and she was able to recover fast .
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My brother got infected with H1N1 or Swine Flu in Mexico. He got a mild fever and luckily he did not die.
If you look at the pandemic of 1977, when H1N1 or Swine Flu re-emerged after a 20 year absence, there is no shift in age-related mortality pattern. The 1977 “pandemic” is, of course, not considered a true pandemic by experts today, for reasons that are not entierely consistent. It certainly was an antigenic shift and not an antigenic drift. As far as I have been able to follow the current events, the most significant factor seems to have been that most people, who were severely affected, were people with other medical conditions.
I was diagnosed with lupus (SLE) 34 years ago, but haven’t had a flare-up in more than 10 years. Until I got the H1N1 vaccine a week ago. Yes, it could be a coincidence, but I do have to wonder. The fatigue that started the day after the shot counts as a moderate flare in my history. I just hope it ends soon.
I’m still glad I got the vaccine, though. I’ve never before had any reaction to any of the seasonal flu vaccines.
i remember being scared of getting infected by H1N1 during the height of the pandemic. at least two of my classmates got infected by H1N1.
I got the H1N1 vaccine a month and a half ago and I’ve been so tired I can’t even function ever since. My body is aching all the time. I sleep 10 hours a night and can barely hold my head up at work the next day. This has to get better soon.
I’m not in a panic situation and very careful during H1N1 in height of pandemic. By following some useful instruction, it was really helped us here.
Thanks for the questions and comments – very helpful as I’m trying to make up my mind whether to get the flu shot this year. We’re going into southern hemisphere winter so H1N1 vaccine is available here for the first time. Last year it wasn’t developed but the virus struck pretty heavy here. Have ME/CFS for 12 years and never had an ordinary flu vaccine – I followed general advice for CFS folk and avoided it. Still got colds, flu, chest infections, regular flares etc but manageable. Last year my doc. recommended I get the regular vaccine on the theory that if I was immunised against and avoided the regular flu it would give me stronger defence against H1N1. Yeah Right! 10 days after the vaccine I got the flu – was only just recovered two months later when I got hit again. By that stage our health system had stopped strain testing so still don’t know which variety it was. 5 months later I’ve been diagnosed with Addison’s Disease (on top of the CFS) and they want me to have the vaccine again. So getting the opinion of other CFS folk is a big help. Cheers and may you all avoid the nasty bug.
I wish I’d never gotten the H1N1 vaccine. I suffered with chronic fatigue syndrome in the 1990’s. Through better nutrition, and listening to my body, I had felt moderately well (no huge flares) for many years. However, since getting the shot in mid-December 2009, I have gone steadily downhill. I am much, much more disabled than my previous flares of the 1990’s. In fact, I’m looking into filing for disability (I know it’s a longshot) from a job that I love. I have hung on, used FMLA time off and been tested for every other disease and condition under the sun. I am in my mid-fifties and have had to resort to a cane and/or wheelchair. Anybody else suffering from a new flare after getting the vaccine after a long remission?
I had the flu shot and the H1N1 flu shot last year. 2 days later I had silent pneumonia that took 3 different antiboitics to get rid of. Then it was 9 months before I felt good again. I have Fibromyalgia and IBS. I won’t take another flu shot again!!!
After getting H1N1 shot, immediately after I developed a chronic sinus infection that is constant, and that will not go away, even after 2 sinus surgeries, a ton of different antibiotics and a pick line IV and nothing will take it away. After blood work was done, it shows my IGU levels are very low which is affecting my immune system. I had many sinus infections throughout my lifetime but they have always gone away with antibiotics up until now, coincidence I don’t know but the shot was the only different I did. I can tell you, I will never get another flu shot after this experience, just in case.