Well, I finally got a flu shot, my first ever.
You might recall from my update last month after seeing my Infectious Disease doctor that she had changed her mind about flu shots for CFS patients and has been giving them since last year. She felt the risk of being exposed to the flu - especially with the bad flu season we had last year - was greater than the risk of a reaction to the shot. Only one of her CFS patients so far has had any problem with it.
So, I decided to go ahead and get one. I waited for a week when Ken would be home, in case I crashed, and went to see my doctor on Monday morning. Like others, she's been undecided about flu shots for CFS patients, too, so I shared what my ID doctor said, and we decided I should try it. Despite my careful timing, Monday was probably not the best choice because I was a bit worn out from Halloween weekend (the nurse who took my pulse said, "Are you nervous about your shot? Your pulse rate is really high." Nope, just OI!)
So, I got the shot Monday morning...and I've been in a mild to moderate crash since then. Bummer, huh? It's not a terrible crash, and I think I'm doing a bit better today, but I've had an intermittent sore throat and mild achiness most of the week. I'm hoping I'm at the end of it now, but I wanted to let you know what's been going on.
I also took my sons for their first-ever flu shots on Tuesday, and they've fared better. Craig has had a minor sore throat in the mornings, but he started that on Monday - probably from too much Halloween fun! He says once he has breakfast and medicines and gets to school, he's been fine. Besides getting a flu shot on Tuesday, Jamie spent a total of almost 3 hours playing soccer (!), so his minor symptoms (bit of achiness and fatigue) could just as well be from that as from the shot, plus he's working long hours to try to make-up all the work he missed recently. Both of them have been able to go to school each day.
So, mixed results so far. We'll see how we fare this winter. My motivation for even considering the flu shot was my 9-month long relapse last winter. It started in mid-September, almost certainly from a viral trigger (though not necessarily the flu) and lasted until April. This fall had been much better so far, so we'll see. Of course, you never know how things would have been without the shot...as with most of CFS, it's a guessing game, right?
Bottom line is that I think the flu shot is a very individual decision for each CFS patient, based on perceived risks. I think I would hesitate to get one if my immune system symptoms (sore throat, swollen glands, flu-like aches) were worse right now, just because it's an additional stimulant to the immune system. If you do decide to get one, my ID doc says she learned last year that you're not supposed to split it into two halves (as she was doing at first) because it's less effective that way.
Anyone else out there have experience with flu shots?
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
7 comments:
I usually abstain (at the doc's suggestion), but last year Zack told me I should probably get it, because the flu was pretty dangerous. I had a crash too - mild to moderate would describe it, I suppose. And now I don't know if I'll risk it this year or not.
PS - Thanks for all your lovely comments on my days of truth posts; I really appreciate them. (And never, ever worry about not being caught up - I hardly ever am, and appreciate your thoughts whenever they show up.)
I got one for 10 years before I got sick (from 1991 to 2001), but I haven't had one since the viral infection that led to CFS. I'm just too concerned about the consequences but then I'm in permanent state of crash or semi-crash, so I think that adds to my reluctance. My doctor leaves it up to me. I agree that there's no right or wrong answer on this.
Thank you so much for posting this. I've been debating about getting one. I'm tempted to skip it cuz I usually feel crappy the day after and that was before I got sick. I'm also doing pretty crappy right now and really don't savor the idea of making it worse. I might change my mind but right now my house is stocked up with Lysol spray and Chlorox wipes. Next time I'm in a drugstore I'm picking up gloves and surgical masks. I'm just crossing my fingers.
I would love to hear about other people reactions to the flu shot.
Yikes, hope that gets better soon. I don't get them myself, but we don't have any kids or teenagers in the house and I'm working from home, so I'm not getting bombarded every day. Totally different if you have people if your house that are going out to public environments everyday.
It bothers me when they think you are having a case of the nerves when you get racing pulse from OI. I get sooooo sick of having to educate each person on each individual little symptom and how it isn't psychosomatic. Like they can know you're sick in a general way but still think you just need to 'buck up' about loud noises, etc. Being in that "but I'm not... it's just" position of having to explain away things when you already don't feel well is a kicker for me. (Even when they mean well)
Take care!
D.
D -
I actually love getting an opportunity to educate someone about CFS, especially someone in the medical profession! In this case, the nurse hadn't read my chart - she didn't know I had CFS - but I still explained about OI. One person at a time...
Sue
Hi. I have post-viral fatigue (parvovirus), not officially diagnosed as CFS yet. I was told not to get my flu shot, the day after I did get it. I am still learning about all the little things that can have such a huge effect on your body when you are battling something like this.
I was almost pain and fatigue free before the flu shot, in November 2010, and have been very fatigued and in a lot of pain ever since. Not certain it was because I had the shot, who knows eh.
It does sound as if you have ME/CFS - some doctors feel more comfortable calling it post-viral fatigue (admittedly, CFS is a terrible name!)
And, yes, it also sounds as if the flu shot stimulated your immune system further (CFS is partly defined by a dysfunctional immune system).
I got a flu shot for the first time this year. I had a severe 1-month long crash following the shot...but since then, I've had a much better winter than usual, so maybe it helped. I won't be getting another one, though - too big a risk.
I hope you recover soon from the shot -
Sue
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