2 years on since bacterial meningitis

Hi I've not posted on here before but I'm hoping other people may have a similar experience to me and be able to share views. Two years ago I went into hospital with a suspected brain tumour which actually turned out to be pneumococcal meningitis. I was really lucky as it was caught early and I only needed 1 week in hospital and then a further 2 weeks as an outpatient. I thought I had no after effects but am recently starting to think that maybe I have. I'm 34 and have a 4 year old and a 19month old. I'm constantly tired and run down and seem to get every cough, cold and stomach bug going. I've put it down to a busy life with two young kids but I can't say I've felt 100% since the meningitis. Run down is the best way I can describe how I feel and it never goes away. I can do things with the kids and go running but the following day I feel really wiped out and find it hard to focus on things. I'm also quite accident prone which I wasn't before (but again that could be down to having two boisterous little boys!). I've had blood tests and they've come back with mild anaemia but iron tablets haven't made any difference to how I feel. I've read other posts about Chronic fatigue syndrome but don't know if that's what I'm experiencing or even how I would bring that up with my GP. Any similar experiences or advice would be very gratefully received. Thank you

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  • Hi Hgriffin, I cannot speak to your experience, other than being a recovering patient of viral meningitis. It has been my experience to have the continuous feeling of fatigue and headaches following my episodes. Doctors all told me I would recover in a few weeks, but those weeks turned into years. I honestly think if I had initially not tried to push my recoveries and listened to my body more I might have recovered sooner in the long run. As others have posted, rest and good diet is very important. I have no idea why doctors don't tell us about this, rather they tend to believe rapid recoveries are the norm, and the slower recovery with fatigue and continued headaches are extremely rare. I had over 15 readmissions and years of headaches and s/s of meningitis, so don't do what I did and push to hard, rather give yourself permission to recover slowly and be good to yourself.

  • Well, I reckon you need to get back to your GP and get some help. If they know you have had BM then they should know that it is not something you just bounce back from. Do you have anyone to share childcare with? It is exhausting for a healthy person with 2 toddlers but BM is a very serious illness and takes a long time to recover from. I had bacterial meningitis in 2001 and had a 3 year old plus a new born but my baby stayed with my parents for the first few months of her life because i was in ICU in hospital and when i got out i had help with them because i simply wanted to rest, rest, rest and i needed silence, which babies,are not known for. :/

    I am amazed you are already home but dont assume that means you are100%, you need to look after you so shout out for help and let yourself heal. It is an illness which deceives, we look fine, we can do pretty much all we did before but we often feel utterly knackered after doing it. Very normal and fatigue is the after effect you will find mentioned a lot on this site. I really wish you well and am glad you have found this site, I hope it will help you a bit x

  • Hi Hg

    Why not try calling Meningitis Now and talking to one of the team? They are really across all this stuff and will be able to offer you help if need be. I had Pneumococcal Meningitis eight years ago & although older than you can understand why you are worrying about your recovery. My advice is also to be kind to yourself and listen to your body. Rest if you need to!

  • Thanks for your replies everyone. I completely agree that there is this expectation that once you're discharged as an outpatient then you must be ok. It's been hard to know what's going on with my health as a lot has happened in the last three years but I will take your advice and speak to meningitis now and get another appointment with my GP. I wish I could get a bit more rest but young kids don't really get that! Wish you all the best too thanks Helen

  • I had bacterial meningitis about 26 years ago and I do think that you do find a lot of things more tiring than you used to. I'm not an expert but I think you must take advantage of any offers to look after your children for a few hours each week and to take more gentle exercise, generally not push yourself too hard, Sorba

  • Hi there,

    I had BM Septicaemia in late '10. I had suicidal migraines for 2 years every few days, I caught every bug, and had chronic fatigue that over years only worsened. 2yrs post BM I started taking Cellgevity supplement. It stopped the migraines and gave me some energy back. Post 4yrs I realised that i'd not been given the right follow up and that what I had had was so severe. The after effects were only worsening. I've worked out that everyone's recovery is different, doctors are of no use as thy don't know enough..especially because none of our symptoms can be found in GP standard testing, and the only way to cope and recover is to work out what works for you and manage it. My recovery is never ending but I have found the best all round solution and it's based on just giving your body the (RDI) max nutrient support that it requires every day. there's only one company I found that offers that and it's changing the lives of all us survivors. I am able to get it to you straight away if you'd like to give it a go... Research KYANI on utube and let me know if I can help you with any more information. My email is misslouise33@gmail.com for anyone who'd like to know more.

    Take care and listen to your body.

    Kind regards, Sarah x

  • Thanks Sarah I'll take a look online. Willing to try anything as, like you say. I don't expect to get very far with my GP. I think unless the problem is obvious and they can easily diagnose then I don't think they'll be interested. Thanks for your reply x

  • Hello there

    This is weird, because I'm 34 with two boys aged 4, and 19months! I had severe bacterial meningitis hours after delivering my youngest by c-section. I spent a few days in a coma, then a week in ICU, and a week on a ward (should have been longer, but I was desperate to get home and get to know my newborn!).

    Last year I suffered with a really poor immune system and was exactly how you describe; lethargic and constantly ill. I was quite low in mood in January this year, so my lovely GP ordered full blood tests to put my mind at rest it was nothing physiological. They all came back clear, so we put it down to exhaustion from a traumatic year and having two small kids to look after.

    I'd echo what others have advised already; take it easy, rest as much as you can, and consult your GP if you're not satisfied (did they do full bloods? Mine checked for liver/kidneys, white blood cell count, iron, cholesterol etc). I also take a multi vitamin and try to get fresh air every day. My husband and his family let me rest when I need to.

    Hope you feel better soon x

  • That is weird, although my eldest was almost 1 when I got ill so I think I was luckier than you going through that just after the birth! Sounds like you coped amazingly well. I have had full bloods done which came back to say I'm anaemic but the iron tablets have made me feel worse if anything. I also had an underactive thyroid before I had my first child but was always unsure that they had diagnosed me correctly as I didn't really have the symptoms (it came up on a fertility blood test). Since then I stopped taking the thyroxine after my youngest was born and subsequent blood tests have shown my thyroid to be normal so not sure what's going on there. My mum comes over a couple of times a week but i don't have that much help with the kids to be honest. I work three days a work when they're at nursery but to be honest I'd rather spend those three days in bed than working! I guess I just need to accept that it will be a slow process, I just hope that this isn't just 'normal' for me now if you know what I mean! Thanks so much for all your replies. :-)

  • Yeah, they think the anaesthetist doing my lumbar puncture passed the bac.men from his throat into my spine (he wasn't wearing a mask). Was in a coma 17hrs after having my baby.

    If you're not happy with your GP, can you see someone else? I had to wait a month to see mine, as he is so popular, but it was worth it. He actually sat and LISTENED to me for 45 mins. About my paranoia that the meningitis would return and that I wouldn't see my children grow up, about the lethargy and low mood and crap immune system. I honestly think the listening helped as much as the blood tests. Perhaps Meningitis Now could do some telephone counselling? Sometimes getting it all off your chest helps.

    Take care x

  • It sound like your immune system is very low... our baby girl got it and she also got everything and anything around... I have her on probiotics from the health shop nothing the Dr gave me would help.. So I went to the local health shop for alternatives... good diet and stay off sugars and things that lower your immune... maybe try walking instead of running... She is still recovering its 9 months on but I do all I can to keep her healthy and well.. xxxx

  • Just read your post and I have to say makes me feel a little relieved as someone else is feeling like this. I had bacterial meningitis 2 years ago and then a second time 6 months later.

    I have a 3 year old and 7 year old. I'm am always tired and find my self going to bed 9pm at latest. I too get every cold going but I'm put on anti biotics every time I get one but these to knock me for 6. I've been to the docs about tiredness I have had blood test but was basically told you have had major illness and will take a long time to get over. But don't seem to get more energy as time goes on so guess this may just be it??

    But I feel your pain or tiredness as it were you are not alone 😞

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