ME/CFS and the pneumonia vaccination…

I’ve discussed before the dire side-effects of the flu vaccines in ME/CFS, but this is worse. If I didn’t know why I feel so ill I’d be seriously worried. Even so, I’m some worried…

Yesterday, at my annual COPD check-up, I was offered the pneumonia vaccine (why I haven’t been offered it before is a question for another day). Given the current flu slowdemic, next winter’s flu season is likely to be a doozy, and given my chances of surviving a normal flu season are no better than 50-50, after querying the nurse about side-effects in the light of my ME/CFS – no worse than the flu vaccine, I was assured, with the same sore arm, I decided it was a good move. After all, it’s mainly the secondary infections, like pneumonia, that kill flu victims, rather than the flu itself, though that, too, can be fatal. It’s all about improving the odds.

36 hours on, I still think it was a good idea, but trust me, it’s way worse that the flu vaccine, for me, at least. This morning I could barely get out of bed, I was dysfunctional on so many levels (I’m still typing scribble – thank god for the spell-check button), and I’m still nowhere near normal, though I am a lot better, This afternoon, though – Wednesday is bread-making day – if I’d had a larger kitchen (fewer chances to grab hold of something), I’d have fallen on my face half a dozen times, it was like standing on the deck of a ship in a storm, and I can barely see. And, wow, “sore arm” doesn’t even begin to describe it. Buggerdly thing has loosened my bowels, too.

Luckily, it’s a one-off lifetime vaccination, which is just as well because if I carry on feeling like this much longer there’s no way I could face it again, and if I get through this without barfing on my keyboard I’ll be doing well.

My advice, if you’re offered this vaccination, and you have ME/CFS, is to think very carefully, especially if you live alone. I should really have stayed in bed today, but it just wasn’t possible. I think the upcoming risks are such that the upside far outweighs the downside but really, anyone with ME/CFS needs someone to look after them, at least on the following day, and also on the day of the injection is it takes place in the morning, as mine did. By 16.00 yesterday I was totally out of it.

Let’s hope a decent night’s sleep puts paid to it. Another day like this will be seriously bad news. I mean, hell, Thursday is pub day!

Er, that was a joke. The rest isn’t.

Update, August 27 2010: 14 months on, and I still haven’t recovered – see this post.

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18 thoughts on “ME/CFS and the pneumonia vaccination…

  1. Hello Ron,
    I hope you’re feeling better today. I found your post because I was looking for info on the pneumonia vaccine and CFS. I was to have the vaccine today and have CFS. After reading what you said I’m waiting. Please tell me how you’re feeling today, or tomorrow. There are a lot of us interested.
    Cheers,
    Sue

    • Hi Sue,

      Just deleted my previous comment as it was completely incoherent – the moral, don’t go to the pub while suffering from the pneumonia vaccine! I felt that I probably couldn’t feel worse doing that, but I was wrong.

      There are two major problems – the pain in my arm, which is totally out of proportion and has contributed to two sleepless nights, and intense nausea, neither of which is showing any sign of letting up. With the flu vaccine I wouldn’t normally feel too bad in the short term, like this, but it would often provoke a winter-long relapse, which is why I didn’t have it last year. I was already in a relapse and had no desire to make it worse.

      Unlike the flu vaccine, which is just a pin-prick by comparison, this one seemed to go deep into the muscle, and I think that’s what accounts for the degree of pain (though I barely felt the actual injection). Subcutaneous injections don’t hurt as much or for as long. Initially, it only hurt when touched, but the slightest contact is enough. Now, though, it also hurts if I move my arm, and it’s moving up into my shoulder muscles, too. Really, I’m deeply unimpressed.

      I’ll try to remember to come back here and let you know when/if things start to improve – if I forget, feel free to remind me.

      Ron.

  2. Day 4

    The pain in my arm is easing but – Sod’s Law – covers a wider area, and now aches, too, from elbow to shoulder, but at least I got some sleep last night. I was tempted, when my arm started to hurt so badly – within hours – to put it in a sling. With hindsight, even though it seems a rather extreme reaction, I think I should have done, as movement certainly aggravates it.

    The nausea lingers on, but is easing slowly, though I still have a horrible taste in my mouth (I forgot to mention that).

    I have a suspicion that it may be tipping me into a relapse, too. The flu vaccine often does, so I’m not too surprised. Not too happy either!

    I’d be very interested to find out how people who don’t have ME/CFS have reacted to this vaccine, for the purposes of comparison so, if that’s you, please post a comment.

  3. Day 5

    Much the same as Day 4, unfortunately.

    While I am getting more sleep now, the sleepless nights at the beginning seem to have messed up my sleep patterns, causing me to stay up later than I normally would and, in consequence, sleep later. I know that a mere two nights shouldn’t do that, so I think it’s messed with my ME too, as that’s often produced erratic sleep patterns, though not for a long time now. Also, horrendously violent nightmares, that have long been a feature of my ME, have returned. Now that I can live without.

    All in all, I’m pretty sure about the relapse now.

    For the last few days, too, I’ve had a degree of unpleasant gastric pain. My stomach is normally temperamental, but this pain is so far off the norm it may be associated with the vaccine. Or it may be coincidence – sorry, I just can’t be sure.

    Nausea still the same, but the pain in my arm has retreated to just a sore spot again, but still bad enough for me to make very sure I don’t bump it in doorways, etc.

    It seems to be following the pattern of some of my worst flu-jab responses, when it would settle in for the long haul, and I’d feel shitty right through to spring. I hope not, as it’s flu jab time in 4 months, and there may well be two this year. And won’t that be fun… By the way, despite what the papers say, the normal flu jab will be available this autumn, according to the nurse who inflicted this on me, probably as well as a pandemic jab for people in vulnerable groups.

    Given that, so far, the pandemic flu is far less virulent than the average winter flu (which routinely kills around 10,000 people a year in the UK – why does no-one panic about that?), I’m not unduly worried. Though that could change.

  4. Thanks for the updates, Ron. It’s so helpful, and I’ll pass it on to others who have CFS. I am really sorry you are feeling like this.

    I’m grateful, because as a result of reading your story I have left my vaccine in the fridge. I’m travelling to the UK in five days time, so it’s too late now to mess about with vaccines which may cause trouble.

    I’ve now asked twenty people in America and Australia who have CFS whether they’ve had the jab, and they all told me they had been advised against the flu jab as being bad for people with CFS, and had not been recommended this pneumonia one either.

    I looked on the internet, and a lot of healthy people are also reporting severe pain in the arm – one even mentioning a swelling the size of a golf ball. Nausea is also mentioned a lot.

    I hope your crash is temporary. I hope you’re able to get lots of rest for a week or so to allow your body to recover.
    Take care,
    Sue

    • Hi Sue,

      You beat me to today’s update by seconds.

      Day 6

      I’m feeling much better today, and I think the secret is anti-inflammatories (NSAID’s). I take Naproxen, or at least I should, but I’ve been feeling so crappy I’ve forgotten to take any for a few days. I took a dose yesterday afternoon, though, and by bedtime I felt a whole lot better. The same today, too. It’s possible less potent NSAIDs, like Ibuprofen, may have a similar beneficial effect.

      Maybe there’s room for some ad-hoc research here, if anyone feels up to it… I must remember it for my flu vaccine in October.

      There’s always some swelling, as it’s quite a large injection – 2 or 3ml by the look of it – and, of course, it goes into a muscle where there’s just no room for it. Result, pain and a lump. Same with flu, though not near as bad, as the flu jab goes into the fatty tissue at the back of the upper arm

      People with CFS aren’t in a high-risk group, so shouldn’t really need the flu vaccine, or pneumonia, unless they’re severely disabled by it, and thus at risk from any infection (I can understand why, but the risks of adverse effects from the vaccine are probably higher than for the flu itself. I have severe COPD, though, so it’s pretty essential for me.

      The flu vaccine always causes problems. A sore arm is a given (but not on the pneumonia scale, just an annoyance for a day or two), and the results vary from feeling a bit rough for a few days – the normal reaction – to getting repeated but minor bouts of a flu-like illness every couple of weeks throughout the winter one year (as did my neighbour, and he didn’t have CFS). The worst problem, as I think I’ve said, has been a winter-long relapse, and that’s been the most frequent side-effect. The severity of the side-effects vary with the actual virus, and if they also include one for the pandemic flu, as they apparently intend to, it’s likely to be no fun at all.

      One thing to bear in mind, though, is that anyone allergic to eggs should beware of the flu vaccine (maybe pneumonia, too, I’m not sure). The flu virus is cultured in eggs and, as a result, can trigger the same allergic reactions.

      One other thing to bear in mind, too – you never hear about the millions who have no problems at all. Despite my experience, the risks are really pretty small (small consolation, mind you!).

      Enjoy your stay here, but be aware that hotspots for pandemic flu are London, the West Midlands, and parts of Scotland. That’s not to say your risk of catching it is high, it’s not, but my normal level of winter paranoia – giving people who are coughing and sneezing a wide berth, and avoiding public transport whenever possible – isn’t a bad idea. The upside is that it’s actually doing far less harm (just one death so far), than normal flu which, as I said above, kills around 10,000 people here every winter. It’s really not a cause for worry, just something to be aware of.

      Addendum:- I spoke too soon. While the immediate problems have abated, I crashed after lunch today, something I haven’t done for years. That suggests a relapse is on its way, if not already here, and pain levels have risen steeply too.

      Note:- It’s now July 16 and I feel like hammered shit. The relapse did, indeed, arrive and, in addition, I’ve felt fluey and headachy for over a week. If I caught the sodding swine flu, I may not notice right now! Really, if this was an annual event, like the flu jab, I sure as hell wouldn’t go near it ever again. Assuming, that is, the fluey thing is related to the pneumonia jab, and isn’t something else entirely. I think it is, though, as it’s not got any worse – or better – it just lingers.

  5. Hey Ron,

    Just digging around trying to figure out what happened to me after i got my pnuemonia shot last week and came across your blog.

    I have no preexisting conditions and was healthy as a horse before the shot. I now feel like I got hit by a train. The pain in my arm was very intense. I’ve been out of it for days. I ended up with fever and developed into an upper respiratory infection that turned into a sinus infection.

    I went to urgent care after my Doc gave me a light antibiotic that wouldn’t work. The nurse there said the vaccine does have more signifcant side effects then we read about with upper respiratory infection one possible side effect.

    Never posted to a blog before but wanted to let you know misery loves company.

    Steve

    • Hi Steve,

      Well, this won’t cheer you up – almost a month down the line, I still feel like shit.

      Really screwed with my ME/CFS too – instead of being OK during the early part of the day, and crashing as the day wears on, I’m out of it all day, and improve in the evenings (I know that’s not relevant to you, but it’s posted for the benefit/depression of my readers with ME/CFS).

      I treated myself to 2 weeks of 500mg Amoxyl 3 times a day (I have my own stock), which knocked the infection down but, a week further on, and it’s back

      I have an annual flu vaccination too, and occasionally the virus, attenuated/dead though it may be, causes minor bouts of flu right through the winter (it’s a pretty common problem, apparently). This poxy pneumonia vaccine is starting to feel very like that. Deeply unimpressed.

      By the way, the first time I had flu in my life was 1968 – about a month after I had my first flu vaccination!

      Ron.

  6. Final Update – or so I damned well hope!

    After 3 weeks of antibiotics the vaccine-induced infection has finally run its course and, for the first time since June 24 I feel OK – well apart from my normal crap.

    And that really does need to be the end of it. Had I gone down with the flu while I was in that state, I’d have been doubly screwed. At least now I’ll have more of a chance.

    So I have a question – what sort of incompetent practise nurse recommends a vaccine with such dire, and apparently well known, side-effects, in the middle of a bloody flu pandemic. It beggars belief.

  7. My 73 year old friend had the pneumonia vaccine on 9/28 and the severe pain started that afternoon. It has been very bad since and she is still not feeling well and unable to life her arm or use it for cooking, etc, as before. they have her on pain meds and told her the nurse may have hit her bursa nerve. I’m thinking it is an adverse reaction to the shot. Any info would be helpful. thanks.

    Also, please researchthe flu vaccine. new article in one the magazines (Atlantic MOnthly maybe) shows in the statistics that it is not effective in combatting the flu. Another friend of ours gets his flu shot every year and gets the flu. Last year he got the pneumonia vaccine and got pneumonia.

    • Hi Marsha,

      From what I’ve learned since I first posted this, it sounds like a pretty normal, if severe, reaction – this is an extremely nasty injection for many people. As for hitting the nerve, the injection site shouldn’t be anywhere near there. Do you happen to know where the bruise is from the injection? It should be in the fatty area on the back of the arm, about midway between shoulder and elbow – there’s no risk of damaging anything if it’s there. (By the way, my arm, as I’ve just discovered, is STILL sore to touch!)

      If you look at the comments in this thread, you’ll see it took me a long time to return to anything like normal. If your friend is worried, though, I suggest going to her doctor – dangerous adverse reactions are rare, but they do happen. If she has a temperature, it’ll be a good indication something might be wrong.

      Re having shots and getting it anyway, can I refer you to this post on the subject – it also covers flu https://ronsrants.wordpress.com/2009/09/16/the-preumonia-vaccine/

      As for the pandemic flu vaccine being ineffective, there’s no evidence to support that view, and no reason why it should be. Beware of what you read online, and in magazines, though, especially about the pandemic flu vaccine – there’s a lot of dangerous – even insane (and I mean that) – out there. Any information I post is either from personal experience, like this thread, or from reliable online medical sources.

      Do let me – and my readers – know how it works out.

      Ron.

  8. Hi, sorry to hear how bad this affected you. I was a healthy hard working mother until I went for my usual flu jab and was offered the pneumonia jab. I have had pnemonia for real and though at the time I felt like I was going to die I think the jab is worst in terms of pain.

    I felt dizzy, confused, excrutiating stabbing pains all over my body – in my feet, my head, under my arms, in my back, down my legs – oh and couldnt move the upper left hand side of my body. Its day 4 and I still cannot even walk without huge pain. I felt sick and have hardly eaten anything. Funny taste in mouth like you say too. I have a fever that make me wet through, and shiver at the same time.

    I wouldnt wish this on anyone. I told myself I felt a bit better this morning so tried to clean the kitchen and fold the washing. After this the pain was agnonising and I could hardly stay awake but couldnt sleep either due to the pain.

    I remember looking at the digital clock in the night and I couldnt work out what the numbers represented – I thought that they were dates rather than the time.

    I told this to my doctor on the phone and also added that I felt I was getting better, and I just couldnt stand the thought of venturing out, having to walk etc.

    I would advise anyone who is offered this jab to think very carefully about it. Ensure that you are able to have at least a week in bed and stock up with painkillers.

    I work for myself which makes it more worrying as I have not had the energy to even log on this week until now.

    The site of the injection itself it bright red and radiating heat, and it is very sore. I still cant raise my arm. My husband had to put my hair up for me – haha thats another story!

    Wishing you well, Suze

    • Hi Suze,

      That sounds like an injection-site infection (almost no-one uses alcohol swabs these days, which I think is wrong). All you should be seeing is a bruise, and a small lump. If it was me I’d get to the doctor tomorrow (especially if you’re running a temperature – have you checked?), or get out the on-call doc. It’s possible it’s just an extreme reaction, but best checked out anyway. And not by phone.

      And people can suffer serious adverse reactions to vaccinations – it’s rare, but it happens.

      Oh, and the bad news – you can still get pneumonia. Bacterial pneumonia, that is – the vaccine protects against viral pneumonia.

      Sometime in the next few weeks I’ve got my flu and swine flu jabs – the timeline is looking as if they’ll be both together. That’s gonna be fun!

      Ron.

  9. oh dear oh dear oh dear…i should have read up on these jabs…i had pneumonia vaccine last year with no probs…2day iv had another pneumonia vaccine along with flu jab…mmmm….i do have lupus & am IgA deficient…hope they havent overdosed me 😦

    • Hi Julie,

      You don’t get two pneumonia vaccinations – only one, and it’s for life (which is just as well). You sure you didn’t have both swine and annual flu jabs? It’s much more likely and they’re normally being given together.

      If you DID get a second pneumonia vaccination then your GP’s falling down on record-keeping, which is bad news. I don’t know what will happen after a second, needless, pneumonia jab, but as you got away with it last time you should be OK. Keep an eye on it though. If you did, in fact, get the swine flu jab, keep an eye on that, too. In either case, if you experience anything beyond a sore arm and feeling a bit crappy for a few days (maybe with a bit of a temperature), get back to your doctor. Which is what I should have done!

      Ron.

  10. Hi Ron, hi everyone:

    what a great informative blog. So it’s been 1 week since I’ve been out of the hospital, and I’m just NOW starting to feel the symptoms of getting sick after receiving my pnemonia vaccine(something I’d never heard of in my life). I feel like if I don’t sleep a decent night soon Im going to die. My heart is palpitating, and yet in the hospital I thought I slept okay. I take comfort in knowing I’m not alone here and it was this damn shot(don’t get me wrong I’m sorry for what everyone has been through). My shoulder is killing me, I’m severly stressed, and I also suffer from Epilepsy. Only yesterday did the coughing and sneezing begin. I thought the headaches were from the caffeine withdrawal. A week later here I am. What kind of crazy delayed reactions are these? Thanks! Hope everyone is feeling better.

  11. January 24 2011 – admitted to hospital with – wait for it – bacterial pneumonia!

    I also had pleural empyema, possibly related to the pneumonia – hard to know for sure – and the whole package resulted in a dramatic worsening of the previously low-grade heart failure that’s been lurking on the fringes of my COPD for years.

    Really, based on my experience, a vaccine well worth avoiding – not only did it make me extremely ill for a long time, it didn’t bloody work!

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