How is your recovery going?

I thought it might be useful and interesting to try to start a thread for us all to post updates from time to time about how we're doing - a place to vent or share encouragement.

I'll go first - I'm 26 year old male, 10 weeks ago came down with VM and spent 6 days in hospital in Surrey.

Although I know it's nothing compared with some of you, I have found the 10 weeks agonisingly slow and frustrating. After feeling pretty good about 3 weeks in, I had a huge relapse crash and have pretty much been on the sofa since. I am extremely fatigued most days, and if I do too much on a good day I have a guaranteed 4 or 5 bad days following it. There is no prospect of going back to work at present, which gives me a lot of guilt as I run a small charity. Headaches are also frequent - sometimes I wake up with them and they last all day, sometimes they just come on if I read for too long or spent time on my laptop.

I've not seen anyone else complain of this, but I've also had very bad digestion issues since coming out of hospital, including bloating, stomach pain, etc and it's been unrelenting for the whole 10 weeks.

As I shared in another post, I've started seeing a Functional Nutritionist who is going to run some tests and I'm really interested to see what this looks like - specifically on my mitochondrial (energy producing) function, adrenal stress glands, and things relating to my gut. GP has also been sympathetic and referred me to Neurologist and Gastro-enterologist. I'm not expecting miracle treatment but little bits of hope on the journey go a long way I think.

The other thing I've suffered with is feeling down and sometimes anxious (about my health), which is not something I've experienced before. I've decided to start counselling, as I'm off work and figure that I should try and do a bit of inner healing if I can. My wife is a counsellor so I see first hand how helpful it can be for people in difficlt times.

Anyway thats my bit - everyone please feel free to share or vent about your own experiences, I think getting it off your chest to people who really understand must be a good thing!

Thanks, Joe

53 Replies

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  • Hey joe

    I relate to all the above..... Regarding recovery it has take me a very long time and if I honest il never be back to how I was but that's me we are all different.....initial Age, state of health etc on onset of illness all plays a part where recovery is concerned I'm sure.

    You are doing all the right things, leave guilt at the door re work, you need to get well that is your first priority....

    I no thus first hand, the frustration I had re slow recovery just put me back even more and to be honest people's perception of VM. Lets face it even still in the literature you read they say you will be better in 2/3 weeks !! Laughable......... so take it slow joe, your brain is trying to recover and believe me it will stop you in your tracks if you don't listen to it....ACCEPTANCE is the key... Something that really helped me was when i read' a letter from my brain' it says it all..... Google it im sure it will help..

    Nurture you, the nutritional side of things is grt, counselling to get to no the new you and all the support & love that's on offer..

    Thank you for sharing your story

    Take care

    Siobahn

  • Thanks Siobhan - I 100% agree about acceptance. Earlier in my recovery I had a few good days and would instantly think I would be ready to get back to normal or back to work, but I've finally accepted that my health is most important and it could take many more months - it took me 10 weeks but I'm now more realistic about it.

    Thanks for your encouragement and advice - really appreciated.

  • Hi there

    On 14th July this year I was admitted to hospital for 4 days with viral meningitis. 11 weeks on and i'm not much better either. I can do a few tasks/light jobs in the morning but then I'm exhausted & achy & sore and have to lie down for a few hours. Then I can manage to make lunch, maybe put a washing on etc then same fatigue, ache & soreness across my back & when v bad even round into the front. I still spend a big part of my day lying & resting. If i do a little too much i pay for it and have to lie for days more constantly.

    I am a 35 year old mummy of two little ones - a boy of 5 and a girl of 2 so it's been very difficult missing out on time with them & difficult on them too as i'm able to do so little with them at the minute : ( I'm thankful for a supportive husband, parents, child-minder & friends. You really find out who's really there for you at times like these!

    I too have bad migraines. I've always suffered from migraines and the night I was admitted to hospital with as it turned out (after lumbar puncture) viral meningitis I'd been taken to a&e to get pain relief for what I thought was just a dreadful migraine but they found a rash, I was burning up etc.. I get a migraine every day and I can only cope with a small amount of screen time, reading before it brings one on. This is much worse post meningitis. I was already on daily medication for migraines but i'm waiting to see neurology now.

    I've found my doctor, while very sympathic, doesn't seem to know a huge deal abt viral meningitis. She is the most senior doctor in our practice too! I was with her last week and she says my symptoms now are those of post viral chronic fatigue. I told her abt this site and that from what I'd read it can take months to recover from v men.

    Practically i'm making super green smoothies every day and I see a great lady once a month who does a great massage of my neck and shoulders which helps some with the migraines.

    I get down about it too. I was used to being an active mummy (I'd just run our local 10k a few weeks before this all) & it's hard to be patient and wait for improvement. I had been on a career break from work for 3 years to be at home with my kids and was just due back last month, in September (I teach Primary 2 children) so it's been dreadful timing too for me but thankfully my principal has been hugely understanding.

    I try to take it a day at a time and remember to count my blessings.

    Best wishes for your recovery

    Juanita

  • Thanks for that Juanita, we're pretty much on the same path! I had a few good days earlier this week but today I'm back to being exhausted and lying down most of the day. The good days are nice but I have to remember not to do too much.

    I've also started making green smoothies and found it really helpful seeing a nutritionist - I'm now on a Paleo diet (look it up, its great although needs lots of prep) to try and help my body out. I guess every bit helps in the recovery.

    Keep me updated on your progress, I really hope you are feeling better soon.

  • Hi. I had VM back in January. I remember to well those early weeks and feelings of despair. I had symptoms similar to yours, memory and attention difficulties, fatigue and headaches.

    I had to return to work for financial reasons and am now up to 30 hours a week. I still suffer from the symptoms, but they are at last improving. I have also learned to manage them better, which I think is a key part of recovery.

    I never thought it would take so long! I have seen a neurologist, and am now on some new medication which seems hopeful.

    As many people have posted, you have to accept that it takes time and plenty of rest. My life isn't what it used to be and you do feel isolated at times.

    But now, I feel quite positive for the first time since VM.

    Hope you continue to make a good recovery. Lynn.

  • Thanks for the encouragement Lynn - good to hear you are on the mend and that there is light at the end of the tunnel! :)

  • Hi Joe, I am 6 months post VM when I had a week in hospital. I still experience all you say about crushing head pain and fatigue and I have had several relapses especially when I try to over do it. I am still off work having tried to return on 2 unsuccessful occasions. It took 4months before I could read, drive or look at a computer screen. Now on days when I don't have head pain, I can read for a while. I take Amitriptyline 20mg to control the head pain which really works but it does make me dizzy and sleepy and I don't feel able to drive far.

    I make green smoothies from kale, spinach, cucumber, lemon juice, carrot and ginger. I take a multi vitamin/ mineral and I swear by acidophilus to prevent bloating. In the past cutting out sugary foods, dairy and fruit worked wonders to prevent bloating. Taking a teaspoon of psyllium husks in a glass of water also cleans the gut to prevent bloating.

    Ditch the guilt about taking time off work. You have had a serious illness, like a brain injury which seems to take at least 12 to 18 months to recover from. I am struggling to accept the state of my health just now as I am usually so fit, sporty and busy but I am trying to take each day as it comes. I am signed off work for another 3 months and I now realise that there are many things I need to be able to do before I can manage my demanding job.

    Reflexology helped with my most severe pain so that might be worth a try.

    Next week I am going to try to do some gentle exercise at the gym and then I may attempt to go back to dog training agility class.

    So you are at the very early stage of your recovery. So chill and be gentle on yourself and let time do it's healing.

    Love Catherine X

  • Oh Joe,

    I forgot to say that with the Amitriptyline I am able to walk my dog every day, do the supermarket shopping and I went out for tea last night. In July, I managed 2 days in London and 3 in Dorset. These I had to take slowly and have a tea time nap and ok they did knock me up for a few days but it is a start. Meningitis didn't stop me from shopping on Portobello Rd or Camden Market! I am choosing to keep positive and I now really enjoy everything I do rather than take it for granted.

    Love Catherine. X

  • Good to hear everyones thoughts and stories. It is a journey full of ups and downs eh.

    Catherine thanks for your advice - and great to hear you are able to do things like shopping and walking - that's still a bit beyond me but early days I guess. Thanks for your positivity.

    If anyone else is up for sharing stories or updates on how you're doing then please go ahead! :)

  • It is great to read all of ur responses. I had viral meningitis in the summer and it has given me strength to read your posts. I have had a dreadful lumbar puncture so having dreadful backpain but what I really am struggling with is the pain in my head. It is like an electric shock through my brain and is completely debilitating. Does anybody else have this? This is in addition to the lovely headache!

  • Hi Jcrome, thank you for starting this thread. As owl246 says, it really is great to read the replies and know that we're not alone :-) The registration number of the meningitis truck ('VM Entero666' for me, though varicella and HSV are now in there too) may have been different for each of us, but it sure is the same darn truck! Sadly I keep getting reversed back over by it (I've been recently diagnosed with Mollaret's meningitis) and am now on my fifth episode in three years, which kind of sucks but has taught me a few survival skills that keep me going. And oddly, at least I now know as the suspension of what has been happening has been killing me, and those around me. (I have been led to think I needed to masquarade as a non-VM sufferer, even 12 months later, and couldn't understand why everything was so hard.) Once you know what you're dealing with, things kind of make sense, and you can plan to combat it.

    As everyone says, I found too, and still do, that time is the greatest healer, though without it being restful, it doesn't count for anything. First time round I figured time alone would do the trick and suffered the way others have better expressed here than I can. It may in fact have led to the recurring condition though I'll never know. Lesson number one for me was, whatever I think I can do, take three things back and aim to reach second best, just for that day! That's First Place as far as I'm concerned in the post-VM marathon as I can then do it again tomorrow (usually). It sure is hard - resting I find is like listening, and more an 'active' than 'passive' skill I've needed to learn the hard way - and I'll be honest, I've not mastered it yet. But each day is a new chance to try again, and practice will make perfect (or as near as I can get) one day I figure.

    I haven't ever had the stomach upsets you have and I wish you well on your journey to resolve and understand those. Hopefully they'll be short lived, though clearly very uncomfortable. Do share back what you find as others may benefit from your experiences and knowledge. You will become your own expert in how to handle your VM/after-effects but learning from each other is key to collective success. I'm going to Google 'letter from your brain' right after this (thanks siobahn). Well, soon at least, as that's not on my list today. (Sorry owl246, I don't know anything of the electric shock in the brain side of things, but you may want to see a doc as that does sound kind of 'different', in the sense of not common.)

    This survival skill may be of use as you recover - I can now longer tell the difference between the effects of the viruses and the after-effects as one episode flows into another, but I pretty much tick the boxes of everyone else's symptoms. So I now have for all intents and purposes a permanent poor short-term memory and as I cannot function on the recovery road without one, I write a list of what I can do that day (taking three things back :-)). I've learnt to be really kind to myself and add things many take for granted. If it's a bad day, I revise the list when I can and add things I've done so I can see some ticks. (Getting out of bed, showering and/or going to the toilet can be real achievements, right!) Some items on the list are either/or, so I can tick the list with just one of them and buy time (e.g. email Ben with this week's news/text Ben to say we'll speak soon), or options in case the day takes a turn (e.g. buy bread from shop/make bread in bread maker). I also add some 'white space' in the day for a collapse or random event I can't predict, and if it doesn't come in, great (but I don't then expand the list; that's a mugs game), and if it does, well VM truck, I saw you coming this time :-) A real winner for me is a water check on the list , though I may take up smoothies reading this and other blogs! If I've failed everything else, I know I can get that down, even a minute to midnight and get a tick. Come on! Another trick is never, that's never, flow yesterday's list into today's. Keep it for sure as a check of how you did, or throw it away, but it's not a to-do list. It's an achievement plan, and if there's no bread today, we'll have pancakes. And tomorrow, I'll make a shorter list, buying tomorrow's bread, not the bread I didn't get today. Lastly, if the day isn't going well (today is okay, so far), I strike stuff from the list, slashing and burning if I need to, or add 'destroy list' and do just that, ticking it first of course. It's my list, and that I can control :-)

    I share your guilt Jcrome, and am also about to start counselling for it too. Work is one thing and I'm right there with you (though siobahn and Bonkitty are on the real money there), but the look in my sons' eyes (3 boys; a 4 year old and 18 month twins) when I can't speak or lift my head to read to the twins, when my eldest says 'when will the bugs leave your brain daddy?', or all three cry when I collapse is burning like an Olympic torch in my heart and I can't shake it. (They always have dibs on my spare 'white space' by the way and are the three things I take back!) But sometimes trying to be a rock leads to becoming an isolated island, and I know we don't need to be here alone. I wish you well, and hope knowing you're not on your own on that road helps. Look for the increasingly greying 43 old guy next to you ;-)

    My list tells me it's time to get some sofa time, or walk to the shops, followed by a afternoon sleep. It's 6 weeks into this episode now, and while the road ahead looks long, it's just one day. Tomorrow is a new start, a new list, and another chance to prove to the truck who is the boss.

    Be good to yourself Sir. Rest is an art; and the reverse side of the sloth coin, and never the twin shall meet. Rest and time on the other hand, are post-VM bedfellows, and neither can function without the other :-)

  • Hi Justinp,

    I totally agree with you that resting is hard to do. I rested for the first 5 months and then started to increase my activity thinking I would be returning to work in September. However I experienced a painful relapse which sent me back to square one and back to struggling to do anything active or involving concentration such as reading or driving. This has been soul destroying for myself and my family. I don't know how you manage with 3 small boys, I struggle to walk my dog on a daily basis. I also feel a little down at the moment as friends and extended family don't seem to understand that I am still unable to be active and out and about. Their reaction is to say that we will go out for a coffee when I am better and each time I do go out, I suffer for days afterwards. Therefore I am never sure what to do. Should I go out and try to be active for the sake of my mental well being or keep resting in the hope recovery will come sooner?

    I have discovered that some of my head pain is triggered from my neck. If I sleep with my neck in the wrong position eg too high on the pillow, then I get crushing head pain. Likewise if I do anything active ( well not that active..gentle walk or pedal) this stiffens my spine and neck which travels up to my head. I thought this was worth a mention in case anyone else might be having head pain which could be caused in this way.

    I hope your recovery goes well and thank you to all of you who write as it certainly helps to know that we are not alone. X

  • Justin, wow thank you for the reply. You really have had a rough time of it.

    I'm really grateful for you and Bonkitty emphasizing the rest aspect again - I've started to feel bright this week and was considering doing a number of things today, but I need to take those off 'the list' I think and let today just be a day to rest. It's so hard not to get ahead of yourself if you feel bright!

    I'm pleased to say my stomach has behaved itself for the last week - I would probably put it down to the Paleo diet I am on which is much kinder on your system than processed foods.

    Some of my recovery hopes are pinned on my thyroid, which we found out last month is very underactive, so I've started hormone tablets for that and we'll see, maybe it will help my recovery. It won't hurt thats for sure - and now I am left wondering which came first; did my thyroid get wonky and lead to a low immune system which lead to Meningitis striking, or did Meningitis trauma cause my thyroid to go out of whack?? Who knows.

    Bonkitty, I was very lucky to have a massage earlier this week after a family member bought me a gift voucher. The lady said that the neck massage she was doing would help with headaches - it hurt a lot but I suppose it's good for me! May be worth investing in a massage or two to see if they can help, given what you said about neck position.

    Just to say that I would also really recommend everyone going to have bloodtests done at the doctors from time to time - that was how they found my thyroid issue and also my white blood cell count (immune system) was very low so I've made a concious effort to work with my body by eating things that are good for immune system, not just lots of vegetables and fruit but supplements, liver, bone broth etc.

    Bless you guys.

  • Thanks for sharing Bonkitty! Poor you, that neck pain and the cause of it sounds awful. I’ve struggled for years to find a comfortable way to sleep, but don’t have your consequences as such if I get it wrong. My heart goes out to you. Jcrome may be onto something there with massages. Could be worth a go. I’m going to book an appointment (though it’s not on today’s list :-)) for an acupuncture session to see if that can help me with the immediate headaches and will let you know if it works out, and wish you well in between. I'm all for alternative medicine and am a reiki practioner though can’t self-heal at the start - first few weeks/months - of an episode as my chakras are all out of whack, but should be able to start soon. Seeing a reiki specialist, if you’re a ’believer’ may help too. Many are happy to do home visits, or if you wish, you could try and learn for yourself. This book is a great start – Reiki The Ultimate Guide amazon.co.uk/Reiki-The-Ulti... ISBN-13: 978-0974256917, and aims to open the practice to all. Just like love, prayer, or whatever floats your boat, all you need is an open mind (and ours are blown open, right!) and belief in yourself.

    I’m all for dog walking too! We had to rehome our lab 2 years ago as we (that's me) couldn’t cope but I miss her dearly and she never judged, or needed to see a ‘physical’ manifestation to know I was in pain and be by my side. We may get a cat soon which I hope can help bridge the (emotional) gap, though it’ll not help with the walking. I hope you can keep it up as best you can, though I know it can be hard some days.

    There’s such a fine balance between light activity and rest and I feel for you. Friends and family mean so well but they just don’t get it sometimes, or at all (I understand why, not that that helps much). A coffee out and fresh air is a wonderful thing, but I agree that it can cost you. Maybe friends and extended family could come to see you, and put some washing on while they’re at it! Your dog sounds a great route to fresh air and knows when it’s time to go home, or to just stay at home with you. It’s just then to educate the real people when they need to leave too :-) I’ve not mastered that yet.

    My children are my driving force and my Achilles heel at the same time. If not for them and my wonderful fiancée, without whom the pillars of my world would come crashing down around me, the daily fight wouldn’t be worth it sometimes. That said, the twins molars are coming in as we speak (they’re non-identical, so not at the same time of course!) and Mother nature created their cry to penetrate deep within us. It works well I can say but at least I’m so medicated at night I can help comfort them and let mum get some sleep. It’s a ‘white space’ event that makes me feel I contribute at the minute, as much as I can, and reminds me what I’m here for.

    Friends and extended family may struggle coming to terms with meningitis generally I think, though my immediate family is my life. But pushing to do the best for them – at least, the best as I understood it then - and going back to work too soon first time may well have landed me in the recurring game. I know it is soul destroying, and it feels like life is passing us by, though we are much loved and still capable of that ourselves, to others for sure. To love and care for ourselves may be a little harder but we deserve it as much, and slowly slowly will catch the monkey. One day, for all of us, in our own times :-)

  • Hi Jcrome, my pleasure and thanks for opening the post. It may sound rough and thanks for your thoughts, though it’s a way of life now and once I’d accepted that I had a form of disability (even if I couldn’t work out what it was), it’s was much easier to deal with. I see so many posts here, and hear other stories, that in many ways I feel quite lucky. I can now name my beast and look it in the eye (most days :-)), and the truck did have VM at the start of the registration, and not BM. Not 2 weeks before I went down first time I lost my cousin to BM within 13 hours of him becoming ill, and the world a beautiful and kind young man at the start of his life. On a bad day, I carry on because he and many others can’t. That and the collective unconscious of all who are trying to get better together gives me inspiration.

    I’m glad your stomach is a bit more back on track and the new diet is working for you. My head aura is very much connected to my lower back and I always get pain there at the same time if not before an episode. I’ve started using it as a warning light that the VM weather is changing, so it's a plus in a way. So glad to hear something positive working out for you. Go paleo man!

    The human body is a wonderfully complex machine and the mysteries of it are so fascinating, if confusing at times. I wish you well on your journey on the thyroid front and would love to know what you find out. I did a research degree in endocrinology a long time ago and am still intrigued by the interplay between hormones and health generally. (I had a growth hormone related condition as a child which seemed to come back during adolescence and figured I’d see if I could get to the bottom of it myself.) Keep us posted.

    I’m with you on the blood tests too. Fortunately, or unfortunately, I’ve had mine checked a number of times in the last few years and there’s nothing there. Always worth that check though to see if anything could be connected to the attack/recovery on all fronts. I had a severe brain trauma and concussion back in 2001 which I’d forgotten all about but it was only by digging everything up that my docs and I found that that may have predisposed me to VM (by residual hairline skull fractures) in the first place, and could be a weak link now. So many connections and possibilities and it sounds like you’re finding yours, though I’m sure neither of us with ever really know for sure, medically. I’m not too fussed with that I must say. Medical science is tough and we’re so few in number and diversity for anyone to understand the meningitis game fully yet. I'm happy to take ownership for mine and work with the medics to get there.

    I’m checking that paleo diet out soon. My fiancée is a vegetarian which indirectly makes me one. Wish me luck! Off to change a light bulb now that my good lady added to my list today (she does believe it's a to-do list). Now that I can do, so I figure it's win:win! :-)

    Be restful till next time.

    Justin

  • Hi Joe, hope you are feeling better since we last posted. I thought you might be interested to hear about some of the things that I have been trying as they may help you.

    Two weeks ago I was rubbing my very stiff and aching neck when I felt and heard a loud clunk. This immediately relieved the pain in my head and the tight swimming cap feeling that I have had since VM. However a second clunk put me into massive head pain, neck and lumbar spine pain along with severe vertigo. So I have been seeing a fab chiropractor who says he has dealt with this before rolling meningitis. It is caused by the agitated membranes. So he has worked on the vertigo / imbalance and started to clunk my spine back into alignment giving me instant relief from the head pain! I am not sure if the headaches caused as after effects are the same ones as the ones caused by the clunk but today is my first day without pain, I guess I will have to see how it goes but I have to do nothing now for 2weeks and I see him again on Monday.

    Regards

    Catherine

  • Hi again, Igot cut short by visitors so continue I also wanted to tell you that I have been doing research into what I could do to help the post viral meningitis head pain and other problems and I found that many people say to eat virgin coconut oil as this is good for nourishing membranes and their are claims that it is good for any kind of brain problem. My chiropractor stated that he has taken it for a year and he swears by it. Sports people also eat it to replenish membranes. It also has 101 other uses. So you may wish to give it a try or google virgin coconut oil to find out more about it. I dissolve 2 tsp into hot water and drink twice a day but you can cook with it. Might be worth a try.

    Regards

    Catherine

  • Hi Catherine, thanks so much. I am up and down at the mo - I seem to have good weeks and then crashes. I've been focusing on Fatigue treatments to try and help my recovery along - and have been taking a few supplements to help some vitamin deficiencies that showed up on my blood tests. For me the tiredness is still the thing keeping me off work and causing me setbacks, it seems like a lottery every day how I'll feel.

    How are you doing generally?

    Really good to hear about the Chiropractor, I'm going to go and find a local one and follow your advice because the headaches and neck pain are persistent. Thanks for the advice!

    Joe

  • Hi joe,

    I'm 4 yrs post BM and I relate to all you've said. In regards to the headaches, I've suffered most my life with them, but after BM the migraines were deathly. They lasted 2 years and I started taking a supplement called cellgevity for my lethargy and amazing, the migraines dissappeared. Well it worked for me so thought I'd let you know. It's a long journey, one I'm still fighting to recover from. Hope your doing a bit better now. Regards sarah x

  • Thanks Sarah - I'm still very tired a lot of the time. The headaches seems to come and go, I think they're slowly easing off, but the fatigue for me is something else - if I do too much one day then I am very tired for days afterwards, and often feel a bit dizzy and tired on the good days!

    Been trying to take some good supplements and eat well to help speed up recovery.

  • How is everyone doing?

    I think I am starting to build resilience - although I still feel slow, tired and headache every day I think my 'good' days are becoming more common than my bad days. Still not able to work - I try to do bits and pieces from home but head pain stops me lasting long.

    Interestingly I saw a friend who is a very experienced Physiotherapist today for a session. He insists that I start to do graded exercise - bearing in mind I've only walked for about 10 minutes at a time over the last 3 months, he wants me walking for an hour in two weeks time by gradually increasing. He is very confident it can be done without adverse effects and thinks some of the fatigue is my body's 'learned' behaviour from months of doing nothing. Not sure what to make of it - anyone else find that exercise has helped in this way? I can't see how it's going to help my general feeling of being unwell/groggy but we will see!

    Any other updates from others? Successes or setbacks?

  • Hi Joe,

    I am still really struggling too. I am still having regular headaches and still can't do much. I was walking for approx 45 minutes prior to my neck and lumbar spine dislocating so back to not walking far. I know what your Physio is thinking because the more I sit and rest, the more lethargic I feel. But I have tried getting more active and then I get horrible head pain and exhaustion. I am usually super fit so it is not like me to be inactive but I cannot get going. Many years ago when I was 18, I had glandular fever and the tiredness I had with that feels like the tiredness now, it just lays you out and people do not understand it. I have been told to go swimming, I usually swim every week, but I couldn't even attemp to swim now. Since my spine dislocation I have been mostly housebound with just 15 minute short walks so I am becoming very low. Normally I am cheery and a positive person but this is getting me down. I have found that friends and extended family have bailed out, lost interest as I am not out and about or they are too busy.

    Like you, joe, I try to get more active and on good days I can do low key things but this always results in several pay back days and therefore in this case I don't think your Physio friend is right. With the glandular fever I just had to let it run it's course and I think this is going to be the same. I am trying not to panic under the 12 month mark.

    The chiropractor treatment is working. He manipulated my neck and skull on my last visit and I was head pain free for 6 days! I go again tomorrow so I am hopeful.

    Thank you for keeping this link open as this terrible illness is a lonely one. Keep strong and play the long game, resting to let the body and brain heal. Xx

  • Sorry to hear you're struggling too. I think that is one of the hard things - you set yourself deadlines and then when they pass you start to get frustrated or anxious about the long term prospects. For me work is the big worry.

    I know what you mean about friends and family - it feels like life kind of passes you by doesn't it. Luckily my wife has been really supportive but without her it would be a struggle.

    I'll let you know how I get on with my physio programme - I've got to do 20 minutes tomorrow which I think will be ok, but then 30 on saturday! Like I said, I believe I can push through and do it but will it take away that feeling of being ill/exhausted - who knows!

    Really glad the chiropractic is working for you! Keep me posted on things - I'm always interested to hear how people are getting on. x

  • I contracted VM some 3 months ago and now seem to have recovered except for continuous pains in the joints, especially at night. Does anyone else have this symptom, and if so does it eventually pass?

    cynr

  • Hi yes I had this for months. It was neuropathic pain for me as after meningitis I developed central sensitization of the nervous system. It's very common after trauma. I take some endep at night. It helps a lot as does light cardio exercise. 2 years later I still have it if I overdo everything, but otherwise it's pretty good. Ask a dr about this condition. It means your brain is reading your nervous systems messages louder than they are. Hope that helps a bit xxx

  • Hi Claudeminh, thank you for your help, will follow up on your suggestions and do some research. My joints are always painful, feels like arthritis but this only occurred after I developed VM.

    xx

  • Yes I can relate to your post. I'm 5 months on and nearly feeling normal again. I got sick with VM in July and spent 3 days in hospital.

    For the last 5 months I have struggled with nausea headaches memory issues and generally feeling unwell. Also I have had quite a few panic attacks. I have only recently got these under control.

    After reading a few posts on here I have looked at my diet and I believe if I eat well I feel better also rest I believe got me better. I tried to carry on as normal 3 weeks after being diagnosed but I couldn't function now if I get 9 hours skeep I'm good

  • If it's useful to anyone, I've seen some good progress with fatigue and 'feeling unwell' by going on a very gentle exercise programme. I've been seeing a Physio who has worked with brain injury and also worked with fatigue patients - he's very good. Bearing in mind I hadn't walked for more than 10-15 minutes in the last 4 months, I'm now up to an hour and feeling good on it, and generally day to day feeling slightly brighter and less heavy. It's not an instant cure but it certainly seems to be helping - he wants me to start a walk-jog programme soon which 2 weeks ago would have seemed crazy to me. Just hoping I don't massively crash!!

  • That's great joe, I am pleased to hear you progress. I am also walking for an hour but still get headache although that could be referred pain from my neck. Please keep me informed on how you go.

    Catherine. X

  • I just looked up this post again today from 2 months ago & it was encouraging to me to read everyone's comments. I had VM in July & since then i've been fatigued/exhausted & sore (the doc calls this muscle ache - it's all across my back) after doing a few things. I had been feeling a bit stronger in Nov which I put down to going to Chinese acupuncture twice a week. Unfortunately then I over did it and went out two days in a row over my birthday weekend & did too much the next week which resulted in a massive crash the following Saturday. It left me confined to bed for nearly a week I was just so exhausted & sore. After loads of lying i'm better than I was but not as good as I had been. Lesson learnt! When I feel slightly better I must not over do it & still take it easy! Hard when I've two little kids I'd love to be doing stuff with in the lead up to Christmas.

    It is so hard explaining how I am to my husband's family. They are generally sympathetic but they don't really get how I am despite me trying to explain myself many times. It was my nephew's christening last Sunday (when I was still very bad) & when I tried to say I didn't know how I'd cope with the journey there, the service, the food back at the house after my mother in law took offense that I didn't want to come!! In the end my daughter was sick & her & I stayed at home and had a duvet day which was good for both of us.

    On a positive note my migraines/headaches had been dreadful post VM & I have an apt with neurology on the 23rd. I've also been seeing a lady who does a thorough manipulation once a month of all the knots in my neck & shoulders (which is where my migraines/headaches stem from). She leaves me headache free after that for a few weeks which is wonderful. Maybe an idea for others. I also had food sensitivity testing done on Monday past. I do think diet is a key area in recovery. The nutritionalist who did my testing found I wasn't intolerant to any foods but she talked & gave me info on increasing alkaline foods in my body. App acidic foods should only account for 20% of our total intake. My friend's friend had chronic fatigue syndrome (similar to VM recoverers in terms of no energy, pain when doing too much in fact this is what my doc thinks I have now). Anyway this lady was completely better after implanting alkaline dietary changes. Worth a try.

    Thanks Joe for your feedback re walking and gradually increasing exercise. Keep us posted. I'm going to try that too.

    Wishing everyone all the very best in your recovery. Keep looking for the positives

    Juanita x

  • Juanita,

    Great to hear from you. Had been wondering how you were getting on as we're on similar timeline.

    Sorry to hear about your recent crash - I find it such a hard tension between listening to your body (rest) and testing it to see if you can start increasing activity.

    I seem to have been crash free for about 4 weeks and have started popping out once or twice a day to run light errands or pop in to see my work colleagues. The exercise has definitely helped but I still have days like today where I feel out of breath and like a heavy weight it holding my body down (particularly my arms usually!). Headache still an issue too particular if in front of screen for too long. My Physio suggests a graded work return in January which is a bit intimidating but he believes I can do it. We'll see..

    I too have been seeing a Nutritionist and I've enjoyed starting a Paleo diet. She did some tests for vitamin/mineral deficiencies and found I have a few things to address, so I've been supplementing things like Vitamin D, Amino acids, B Vitamins etc to help support my body.

    I really agree about diet - food can be medicine, but can also be harmful. Currently reading 'The Immune System recovery plan' by Susan Blum which is an interesting one.

    I have a Neurology appointment today, my first one since VM, so will let you know what it involves.

    Well done for staying positive, being proactive with trying different things and being so encouraging, I really hope no more crashes for you and that you can do all the things you want to with your family this Christmas :)

    Joe

    x

  • Thanks Joe

    That's very encouraging that your physio is suggesting a phased return to work again in January for you. Listen to your body & go as slowly as you need to. I'm sure you're looking forward to the normality of work. I'm signed off to the end of Jan but I've told myself I want to try to be able to do a few weeks of completely normal activity again & not feel any the worse for it before factoring in work as well. I teach 5&6 year old children so I need to be able to be on my feet all day first. My first target is being able to manage from I get up to lunch without needing to lie down. I'm a way off that yet but I'll get there.

    Thanks for that book idea. I'm going to check it out. I have been reading (when i'm headache free) a book we happened to have in the house -'Beat stress & fatigue' by Patrick Holford a nutritionalist. It's v interesting.

    I hope your neurology apt goes well today. Let me know how it goes. I'm going to go for a 5 min walk later & increase it gradually. Seems a long way from the 10k running I was doing in June! but i'm determined to get back to that again some day as slowly as is needed : )

    Take care & i hope you continue to get more strength each day

    Juanita

  • Hi Juanita,

    So my Neurology appointment was a mixture of things! He was a nice chap but he said that I have Chronic Fatigue Syndrome and that unless we intervene it is unlikely to get better. I suggested that I thought it was just a slow recovery from Meningitis, he didn't seem to think so.

    He's scheduling an MRI and some blood tests but he wants to put me on anti-depressants to help with the fatigue. He said it does help prevent chronic fatigue if you do it early enough - not something I've read elsewhere and really not sure I want to take them.

    Anyway keep me updated on how you're doing!

    Joe x

  • I've never had to deal with the fallout from VM, but have had some exposure to CFS. Have you ever researched glutathione?

    At any rate- there is a very interesting article about CFS and glutathione and you might find something useful in it.

    All the best

    mymaxwholesale.com/chronic-...

    Lorraine

  • Hi Lorraine - thanks for your advice. I think you're spot on - I've been seeing a Nutritionist who has put me on Liquid Glutathione and NAC tablets to help with this. I'm also on a number of other supplements in order to support my body as best I can - hoping the fatigue will gradually lift. Any other experiences or wisdom you have very welcome too :)

    Joe

  • I hope those tablets help with the fatigue Joe. It's all worth a try. I'd been meaning to reply again to your post but then ended up with a dreadful run of migraines so screen time had to be avoided. Much better thankfully now.

    I had my neurology apt yest afternoon & I was v disappointed by it. I think, in hindsight, I had expected more from it than I should have as I had been waiting over 5 months.

    He said (looking at my scan on screen) I had a bad case of v meningitis (not heard that before) but he didn't want to talk at all about the after effects I was feeling of fatigue & soreness as he stressed I was only there to talk about my migraines. He didn't say much abt my migraines either except to say it's common if you were prone to migraines before meningitis (which I was) to have them even more acutely afterwards. He said he would send a letter to my doctor about possible medication to try.

    I pressed him then on my fatigue & pain & he started talking about how a lot of this can be in the mind & how I need to push through it & how I need to start getting out & about & doing more & basically not lying around as much. I honestly don't think the man believes there is any such thing as fatigue & exhaustion post meningitis & I didn't dare bring up chronic fatigue as I don't think he would recognise it as a condition! The whole apt annoyed me greatly since he made me feel that my illness is all in my head.

    And as a result of travelling all the way to the Hosp yest etc I am so very sore & fatigued that I haven't made it out of bed yet today on Christmas Eve when I should be spending the time with my 5 & 3 year olds.

    Anyway so sorry to moan & go on about it all. I have up to this point tried to always be positive but it's hard when a doctor doesn't take you seriously.

    In spite of our restrictions at Christmas I hope & pray that you all have a good Christmas with your loved ones

    Juanita

  • Hi Juanita,

    I'm sorry about your appointment yesterday - I think there is such an issue in the health care system when it comes to getting to the bottom of things and treating the patient as a whole. I've had many frustrating appointments too where I feel fobbed off.

    I hope that you have more energy tomorrow and that you can have a nice time with your family. I too am feeling tired as my sleep has been thrown off again - unfortunately taking hours and hours to fall asleep.

    Luckily I haven't been having bad crashes - so I feel unwell generally but not having the very low lows I was having previously. Not sure whether the supplements and exercise has made me more resilient or whether it's just a time thing.

    Thinking of you and everyone else who is struggling with recovery at the moment.

    Hope you have a good Christmas and New Year :) stay positive - next year will be better than this one, that's what I keep telling my wife!

    Joe

  • Hello Joe

    I was diagnosed in July 2013 at the ER here in Arizona with VM. I have been on a long journey trying to get back to my old self - if that is even possible. The folks commenting here are spot on with their advice. Everyone is different in terms of their length of recovery and the doctors telling us we should be better in a few weeks does not seem to be the norm for me and a lot of the folks who follow this website. Lately I have been dealing with extreme muscle and joint pain which was not there prior to my VM diagnosis. I completely understand with you on how it can make you anxious and depressed on the slow going in terms of recovery time. I absolutely agree with taking the needed time from working to get better. I went back to work after 5 weeks and that was way too early and I have been paying for it since. Having your wife as a counselor is an awesome thing because sometimes just talking about the pain your feeling is very therapeutic. Hang in there and I believe that you will see progress in your recovery as time goes on. This website and the awesome folks who take the time to reply to our posts I know have been a big help to me in my recovery and keeping my spirits up. Best of luck to you.

  • Happy New Year - how is everyone doing?

    An update from me is that I seemed to have gained some resilience, in that I have not been having big crashes each time I increase my activity. I still am having headaches if I concentrate for too long on screens and I'm fatigued still, but it is gradually easing. I'm back at work part time this week and so far so good. I do get very tired in the afternoons but it's slowly improving (very slowly!!!). Sometimes I can only tell I'm improving because I keep a chart of my energy levels every day and I can see a gradual upward trend.

    I've been able to progress from walking to a light walk/jog programme from my physio, and so far this has been fine although obviously hard work!! Nice to be out though.

    Hope all is well...

  • Hi Joe,

    Great to hear that you have made it back to work and your exercise plan is going well. I was wondering how it was going. I am also up and about more and feeling better for the past couple of weeks. My main problem now is my dislocated neck and spine, it keeps dislocating and that is slowing my progress down. Still not at work and also get tired but I wonder how much of that is the Amitriptyline so I have reduced that by half to see. I am managing dog walks most days and I can now watch TV, listen to music, read magazines and I am building up screen time by playing memory games. Actually went to the cinema this week which is great progress! I need to start exercising ASAP as I have put the best part of a stone on....first time ever :(

    My headaches have definitely eased especially since the chiropractor worked on my cranium.

    So I am pleased we are slowly making progress.

    Best wishes

    Catherine

  • Hi Catherine,

    Hope you're well. I've had to slow down the pace a bit - as soon as I started feeling brighter I was back to work 3 days a week, doing the cooking and washing up, doing exercise, and unfortunately my body has hit a bit of a wall again. Not a terrible relapse like I've experienced before but my body is definitely feeling weaker again - think maybe I bit off too much! I guess it's just another of many lessons learned about recovery :)

    I think I need to be happier with slow progress rather than saying yes to everything and doing more and more! Hope you're getting on ok.

  • Hi Joe,

    Lovely to hear from you. I am making slow but good progress. I am walking every day for a couple of miles and I have started gentle pedalling on a recumbent gym bike for 20mins. Also able to nip to the shops and do work around the house. I have a couple of busy days and then a sleepy catch up day. But this is still far off what my activity levels were like before VM. I am hoping to go back to work in April when hopefully my spine will be back in working order.

    It has been quite an ordeal but I keep making it positive. I have used this time to contact old friends whom I had lost touch with so that has been good.

    I think it will be a heck of a shock when I do return to work and I expect it to be hard as my job is very demanding and high on concentration.

    Take it steady Joe. I think it will take a while. I had glandular fever years ago and that recovery was similar and I just had to go with it or be ill again.

    It is tedious though so try to enjoy the down times.....I watched the whole of Breaking Bad and now I am on Nashville and I would never have the time for those normally! :)

  • Hi Catherine, how are you getting on? Hope you've been making progress in some way.

    And Juanita would be great to hear how you're doing if you're still looking at this post?

    All the best :)

  • Hi Joe, lovely to hear from you. I hope your recovery is going well. I am not doing great mainly due to my many dislocations. I have had a lot of manipulation but my spine keeps dislocating causing huge headaches! Last week I had my face bone and jaw manipulated and the has thrown me off balance and my spine is painful..in fact I hurt all over. Aparantly my injuries are like that of a heavy weight boxer or motorbike racer! That's how strong the crushing of the membranes was!

    So now I don't know what to do....do I keep going with the chiropractor who is sure he can sort it, or do I ask for orthopaedic opinion?

    I have been off work for 11 months and that is becoming a worry but I don't think I could get through a day, let alone drive there.

    Sorry to let this all flow out but I am reaching the end of my teather as I seem to get worse and not better.

    Still keeping my sense of humour though, thank goodness!

    Hope everyone else is doing better.

    Let me know how you are Joe, how is the exercise going?

    Catherine x

  • Hi Catherine. That is so frustrating for you to have those dislocations - it's bad enough recovering without those extra bits going wrong. I'm guessing you've had to pursue all this yourself without much help from GP? Really hope the answers come soon.

    I'm doing quite well - I keep having to remember that I am making progress! I keep checking back at journals and even posts I made on here to reassure myself that I am feeling stronger. I'm back at work around 20-25 hours a week at the moment which has been ok - I've only had to go home once due to tiredness. It feels manageable but I feel like I'm dragging myself through it rather than walking on air!

    I've taken the exercise back to just walking, so I walk 1 hour twice a week and then fit in shorter walks more regularly. The headaches are easing too - I can now work at a screen most of the day without triggering headaches whereas 3 months ago that was still an issue. So I can see the healing process happening in various ways, overall there are lots of positives, I've just had to accept I'm not going to suddenly wake up feeling wonderful, it's going to be subtle and gradual.

    Keep us posted x

    Joe

  • Hi Joe,

    I am so pleased to hear that you are making progress. I agree it is slow, gradual progress. It was similar after glandular fever. It gives me hope to hear that you are back at work and using the computer as that is something I was worried about. My work is everything that is so difficult for me to do and the conditions are totally wrong for my spinal problems so I am concerned about that.

    My GP is very supportive and I have made another appointment to see him this week re getting a orthopaedic opinion. We have funded the chiropractor treatment. In April I will stop getting sick pay so I am having to think about what to do next.

    Anyway, thank you for asking about my progress, it really helps to talk to someone who understands the problems.

    Catherine. X

  • Any time Catherine, I know how frustrating it can be. It's a big life change isn't it - at my current rate I am guessing it will be 12-18 months before I feel normal - and I really do believe I will eventually get back to normal, but it's a big chunk of life and like you say, its important to keep a sense of humour and stay positive. Keep going, you're doing everything you need to do :)

  • Hi Joe,

    After another bad day, slept all day, not like me on a nice sunny day, I have been referred to a neurologist. Hope that brings some help and relief.

    Xx

  • Catherine, sorry to hear this - those days are pretty morale destroying sometimes aren't they. I find I'm better at managing the bad days now because at least I know I can have good days. It took me a long time to be ok with resting. Hope the Neurologist can help - mine focused on 'Chronic Fatigue' and wasn't very helpful in terms of treatment but was sympathetic. He did an MRI which came back fine.

    Keep us posted. x

  • Hi everyone.

    For those struggling with after effects, I can say it does get better with time. I'm exactly 8 months today since I went into hospital with VM, and I am now finally back at work full time. I am still feeling a bit weak and not quite back to myself, and I still have the odd bad day where I'm exhausted and have to just lie down or take the day off, but overall, month by month, I have made good progress. Sometimes I thought I never would. My next goal is just to feel good! And I still think that is going to take many more months, but I'm so grateful to be functional and doing the job I love again.

    Just wanted to pass on hope and encouragement to anyone who has been struggling - it can be such a long process. I've still got to pace myself and look after my body, by no means am I ready for sport or 'normal' life, but being able to work full time is a big step forwards.

    Joe

    x

  • Hi joe, that is good to hear. Hope you continue to make good progress.

  • Hey Joe,

    Firstly I have to say that it was such a good idea to write about your progress. It's so amazing and inspiring to see that your now nearly back to yourself!

    I got meningitis last year and to tell you the truth the recovery time wasn't actually long.

    Unfortunately... I got it again this year, it was horrible when I realized I got it again... the lights on the cars hurting me on the way to the doctors was a diagnosis in itself, as well as bringing back horrible memories of getting sick last year.

    Anyway, three months on since I got it this year and my energy is well, not there! I spend nearly all day in bed, and am completely wrecked after I have a shower even. I was improving a little but got the worst setback when I stupidly tried to give my horse a worm dose and she hit my head! I was so confused when I woke up I couldn't even name my brothers, which was awful! Luckily I'm getting better after that incident (though still spending most of the day in bed).

    I'm so sickened because I'm in my final year of school so I have to repeat (despite the fact that I actually did well in the mocks!)

    I'll just have to give my brain more time to recover I suppose!

    I have promised myself to make the most of my health when it returns!!!!!!

    Glad to hear your getting better!

    Eponine

    X

  • Just thought I would re-ignite this and see how other people are doing who posted originally?

    For me it's been close to 18 months since VM. Looking back on my posts I am so much better now than 12 months ago. I am living fairly normally now, however I don't feel 'back to normal'. I also had a nasty bout of what doctors think was Labrynthitis in July, which has really kick started the head-aches and pressure in my head that had since healed from the VM. Overall though I'm relieved to be able to work full time and do a pretty normal schedule. Hope everyone else is recovering well.

    Joe

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