Viral Meningitis Recovery

Dear all

I would really appreciate some advice & would love to hear what has worked for other people in their recovery from viral meningitis?

I ended up in hospital last July (9 months ago today) for 4 days with what the neurologist later told me was a bad case of viral meningitis. Since then I have had chronic migraines which I'm getting some relief from now thankfully but the worst is my on-going extreme fatigue & muscle pain. I'm only able to be on my feet for 2 hours max (often much less) before I get really sore all down my back, arms & round into my front & I also get very fatigued. The only thing that eases my pain & fatigue is lying & resting so I've done a lot of that in the last 9 months!! I have two young children who I'm not able to look after which is hard.

I've tried accupuncture which I saw a very slight improvement with. I'm juicing every day & eating as healthily as possible. I've been walking every day for the past few months & now can manage about a mile but I get such fatigue & pain afterwards I wonder should I cut back?

My doctor is sympathetic but she seems at a loss what to suggest other than give it time & rest lots. As time goes on I get concerned that my symptoms are that of chronic fatigue syndrome. I just would welcome other people who have gone through this advice & experience.

Many thanks J

18 Replies

oldestnewest
  • Hi

    So sorry to hear that you are suffering. I had VM 15 months ago, in hospital 9 days.

    Like you I also experienced continuous migraines, joint pain, and fatigue, along with memory and attention difficulties.

    I can say that at the time I never thought I would get better. But slowly things do improve and notice that I can do more before getting so fatigued. Headaches are getting less too.

    It takes time, and yes, lots of resting. But it does improve 😊

    My advice is to pace yourself, and gradually increase activity. Try not to over do things on your 'good days'. I know it must be difficult when you have young children to look after.

    I wish you all the best, and hope you continue to recover. Stay positive, things will get better! ☺️

  • Thank you so much for your reply. I'll keep trying to be patient & rest lots. Are you able to be back at work yet? J

  • I went back to work on a phased return, part time, after 4 months but that really was too soon. Found that headaches worsened and really struggled with extreme fatigue. I am still not quite working the amount of hours I used to, but have learnt to not push myself so hard. Health is more important.

    Having had VM has changed my outlook on life., and maybe for the better 😊

  • I had VM 3 years ago. Was in hospital for 10 days. Recovery took at least 2 years. I found that if I over did it physically by...walking...my body told me by laying me up with a 'meningial like headache' (a bit like a migraine). I would have to take pain meds and go to bed. If I did anything that taxed my brain like watching an action movie where I had to follow a lot on the screen...headache. If I was having a heavy or emotional conversation or were concertration very hard....headache.

    So I learned to listen to my body and dial stuff back. The muscle aches and head pain you are getting is your bodies way of telling you to dial it back.

    I realised that my brain had been injured and that it needed rest to repair. A nursing sister friend of mine explained it that if it had been a broken leg they would have immobalised it by putting it in a cast....but it is the brain and it can not be immobalised....every time you open your eyes your brain is at work...when she explained this...I got it! So immobalise your brain by shutting your eyes, sleeping, don't watch busy films and don't do things that require a lot of visual or auditory stimulation.

    She also said that as it was a virus.....fluids were essential to flush the system so drink a ton of water.

    Incrimentally I got better. I learned that one big step forward could result in 2 steps back so slowed up and listened to my body..switched my brain off for an hour a day in the afternoon and used ear plugs and eye covers.

    Remember, your brain needs permission to recoup and recover. Actively and overtly immobalise it.

    Hope this helps, good luck.

    PS.

    I am fully recovered now!

  • Great to hear you are recovered fully now. Thanks for your reply j

  • Hello - I was diagnosed with VM in July 2013 and after almost 2 years it is slowly getting better. The fatigue and pain seem to be a common thing among us VM folks because I still get tremendous bone and joint pain. I have been checked for arthritis, lupus, MS, and everything else related to it to see if something else is going on. Just had my shoulders MRI'd the other day because of the pain. I am much better than I was about a year ago. But the folks replying to you are right, you have to let your body rest, mainly your brain. I was told to treat this illness like a brain injury and take it easy when your body tells you. Doctors really do not know how to treat the recovery process of VM. I have had the best advice from these fine folks who replied to me over the past 18 months. You will get better, do not get down on yourself. We are all in this fight together. Take Care.

  • Hi Juanita, the previous replies are spot on. I too, found that the best, and only thing that helped me get better was rest. I also was perscribed Nortriptyline which helped with the headaches. 2 1/2 years later I can say that I'm functioning normally again. It took a long time of patience on my part and of my husband. His support and understanding was crucial. I'm sorry you're going through this. Be patient with yourself and listen to your body.. Take care.

  • Hi, I'm the granddad of the VM community (almost literally my first grandson is due any day now) as I had VM in 2002. I just wanted to reiterate what fellow respondents have said, rest and nag the heck out of the medical profession (they're taught in training that it's like flu and is never serious and doesn't have lasting side effects). My VM was near fatal and I was off work for nearly six months and I had 5 years away from physical exercise whilst the damage to my brain's surface settled down. Ten years on from the attack I did my first half ironman triathlon (1.2 mile swim, 56 mile bike, 13.1 mile run) so it isn't a life sentence and you will get better although you may have to re-define what 'normal' is. For now though listen to your body, don't push through the bad days, give up and rest because if you don' then the next day will be worse. VM is a much underestimated disease and even Meningitis Now I think were surprised when they did their first survey about VM just how serious it could be and how many people were left with side effects, so much so they now have Vocal about Viral week in May, the first one was last year. I write an occasional blog on here as well which has charted my recovery and the ups and downs of being a VM survivor so please have a look and it might just help. Good luck and take it easy :-).

  • Hi

    I am sorry to hear about your experiences having contracted viral meningitis. I have been through similar experiences to you having contracted Viral Meningitis in 2011. Like you I have two young children and fortunately a very supportive wife, who I have put through the mill... I have suffered migraines every day since 2011 and have recently (Jan 15) been diagnosed as a Chronic Migraine Sufferer.

    My wife got in touch with an organisation, Meningitis Now, (just Google it) who have been brilliant. They are a charity and are supportive and knowledgeable in everything they do.

    They listened and I had a support worker come to my house and talk to me and offer advice and guidance for me and my wife. I found this incredibly worthwhile. They have also provided funding for alternative treatment, Cranial Osteopathy and Reflexology, both treatments I found very beneficial, more so the reflexology which I still have every month, now self funded.

    The consultant who I am under the care of diagnosed my condition due to the fact that I suffered (two) what I described as Migraines, nausea, head aches and flashing lights etc so 20 years ago. He believes, due to previous two experiences I am a sufferer of migraines and they have been dormant in my body and the meningitis has erupted it to cause my continual head aches.

    I heard about botox injections in the head, which tests show can help reduce and or even clear head aches, and last week (8/4/15) had my first course of injections (NHS funded). Its early days but there is a change in my head aches.

    I am sorry if I have waffled on and I'm not sure if this helps but I would seriously contact 'Meningitis Now' and talk to them.

    Small steps on a long road to recovery. Good luck..... and try to remain positive, you have young children who are your motivation.......

  • I do hope the Botox injections are a big help for you. I sympathise as I've suffered from migraines for years & they're nasty. I now go to a great lady once a month who does a deep muscle massage of my neck & shoulders. This has helped hugely with my migraines recently. Maybe could be another option for you. Thank you for your reply j

  • The only thing I would suggest to you is see another specialist and see if they they diagnose you with Viral Meningitis or something totally different.

    I was told I had Viral Meningitis but afterwards after looking into it I found I had had encephalitis. Not nice but true.

  • I had this about 13 years ago and I was in hospital for around 10 days and I hated the feeling I had in my head of like maggots crawling inside my scalp and the muscle fatigue , diclofenac and cranial sacral massage was the best cure ever x good luck

  • Hi JuanitaMorrow,

    I am 12 months post VM, I think we have spoken before. At 9months post VM, I was feeling just the same as you but my neck, spine and jaw dislocated due to the squeezing of the membranes making my condition even more complex. I still have severe headaches and fatigue and I do as the previous responders have suggested. Rest and more rest.

    Things that have helped:

    Amitriptyline 20 - 30mg taken at 7pm...if I take it later, I can't get up in the morning.

    Cocodamol which help with referred headache from my neck.

    Virgin coconut oil....dissolved in hot water which I drink

    Kale and spinach smoothies to boost immunity.

    Multi vitamin and fish oil. Chia seeds are good source of omega 3

    Not listening to music or busy TV programmes. I am trying to read for a short time on good days. Avoiding noisy, busy places.

    Deep tissue sports massage to relieve the ache in my muscles...excellent results as I was hardly able to walk and now I am walking my dog most days.

    I went for MRI scans this week and I am waiting for results as the headaches were severe and my left arm and leg went weak with reduced sensation.

    This week my headaches are improving due to the Amitriptyline, I pace myself carefully and try not to over do it. I say "no" to a lot more things as I know it will knock me up later. I am still not back to work and won't be for a while yet.

    It is very frustrating and upsetting to be this ill for so long. My life has totally changed as I was previously very active with a demanding job and sporty activities. Now the most I do is walk my dog and perhaps one other task. I am slowly starting to feel better though. I am told it can take 18 months or more to recover so I am keeping patient and positive and hoping I will continue to improve.

    Take care, keep patient and pace yourself. At 9 months ,I needed to rest most of the day and now I rest in the evening and potter around in the day, so it will improve. X

  • Thank you so much for your reply & advice. It was on your advice on some one else's thread I started juicing. I'm glad you're improving very gradually. I hope it continues & gathers pace for you. Take care j

  • I had VM in November 11, having what the consultant called a particularly severe strain, which he later said had made me very ill. I was in hospital for around 8 days and on sick leave for a couple of months. Given how exhausted I was, I think that was far too soon. In fact, when I was the consultant again in late February, he was surprised that I was already back at work. My headaches lasted for several months, gradually becoming less severe over time. Several years on, I still tire easily and my concentration is not what it was!

    I was offered cranial osteopathy as part of a pilot by Meningitis Now. It lasted for several months and had what I would describe as limited effect.

    In the long term, I have impaired hearing in my left ear, as a result of damage to the blood supply to my ear nerves. Because of that, I find I have mild balance problems. If asked to, I can't walk in a straight line! I also have a reduced core body temperature, which basically means that the norm for me, is what would usually be considered mild hypothermia.

    It can be a long journey. I have to say, the medical profession have been very good for me and I have come across several concerned and well qualified individuals, who have afforded me all the time I've needed, when I've had a need!

  • HiHi Juanitamorrow

    Its great that you've had lots of replies .Someone mentioned cranial osteopathyosteopathy.

    I had VM last year,in hospital 10 days, took a good 8/9 months to get really back on track.I also have young kids so completely empathise.I'm a nurse, and had phased return after 6 months.

    My absolute godsend was cranial osteopathy, funded by the amazing meningitis now trust.

    I have mollarets and am on acyclovir long term.I still have occasional c.osteopathy and it works wonders.I am better at sitting down than I was pretty v.m,!

    Don't overdo the walking, you are at risk of chronic fatigue.pace yourself and listen to your body.Don't go walking if you are tired.I'm a runner so that went against my attitude to life.its tough but be kind to yourself,keep active but in small bites.

    Supporting my patients with fatigue management is a big part of my role as a cancer nurse so I knew how to manage that aspect and I really would say pace yourself and be patient,its slow but you will get there.

    Hang in there,its such a tough time , good luck xx

  • Hi Juanita, it's lovely to speak again, and sorry it has been a while.

    As ever, I'm joining the party late and can only repeat the great advice above. I would like to add one thing though if I may, and that's some feedback on the back-to-work point you raised with Maisie23.

    I've been off the grid for about 3 months on the final stages of just this roller-coaster and trying to get back to work ‘fully’ before the consequences of not doing so caught up with me. I believe in no regrets but confess I have only done this work-wise as I truly had to, and it has been challenging to say the least.

    Like Maisie23 I went back on a phased plan, starting part-time and building up from 1 hour, every other day, to 8 hours/day (my last VM bout was September last year btw). It has taken me 5 months to get to 40 hours/week and I’ve had a few hiccups along the way, including one I’m working through now where I’ve fought hard not to fall back into another episode. Like many I’m sure, it all starts well, and like those good days, it’s easy to feel that you can push yourself just a little more than you should (we all do it, hence needing to tell each other not to, as if we didn’t, who would know not to :-)).

    Initially, I was religious in sticking to the plan, but it’s all about the spheres of control. I can control myself, influence those and things close to me, and all else is out of my remit. I’ve spent so long in the last 3 months trying to reinforce the barrier between the outer ring and the inner two that it has soaked more energy that I’ve had, which could so easily have resulted in a slip backwards (the ring strata was bent due to a new boss starting, my 5th in 3 years, who has already now left the company). I think I’ve caught it just in time, but this has been a tight-rope I would not wish on anyone. That is, anyone with a challenging job I feel is likely to be drained by maintaining the strata rather than doing the job itself, and setting and holding boundaries is real tough on the energy tanks.

    I may have saved some things that are really important to me – which is not the job itself I should say – that’s just a tool to the end game (basically, enough money for me and the family to survive the next full episode when it comes, as I know it will). And, it can be done, but there is pain (a lot) and collateral damage along the way, and almost daily visits to look at the sub-culture under the fridge if the timing is even just slightly off, and mine is doing really well, and benefitting from this great British warm weather. Gramps has it right (good luck with the new arrival J :-)), working through a bad day only goes one way. So, if I had a ‘real’ choice (noting that I do, and exercised it to go back), I would still be working through the part-time shift aiming to hit full time months away from now.

    But now I’ve survived winter and while the scars heal, I was planning to feedback on my previous post on what has worked for me over the last few months on the VM recovery front. It’s a bit more than I can share here and needs a little thought as some things may have use to others, while other elements have purely been useful for me in survival mode and I’d not advise them lightly.

    So, sorry for being a silent partner and not around to contribute to the wondrous throng. Though there’s some great success stories here, of the new ‘normals’ we can reach, and we’re getting there together, one day at a time I figure. Slowly slowly catch the monkey!

    Justin

    PS, I seemed to spend more time than I should admit to in graveyards as an adolescent and never did stumble over a 'stone saying the here-in-under wished s/he worked harder ;-)

  • I was diagnosed with VM back in August. They thought originally I had bacterial meningitus but it would see that not only did I have VM but also an unknown infection in my body as well. I was in hospital for about a week and then I was allowed to go home on the understanding that I returned for further bloods and to see the doctors daily ( my daughter has autism and was not coping with me not being at home so it was mutually agreed it was best for me to go home for her sake as long as I basically returned to hospital daily)

    Recovery was very slow and due to the infection I also had I had CT scans and MRI scan. I was seen by a neurologist in December as the headaches never really let up. I was diagnosed as having chronic migraines. It was most likely caused by the unknown infection or a side effect of the VM as never had so much of a headache previously.

    I am now on topamax which has side effects but these are the lesser of the two evils. I was determined to return back to work, I am a teacher, and I was so frustrated that an illness like this was preventing me from doing a job I love. Rightly or wrongly when my supportive doctor said I could try a phased return 5 weeks ago I jumped at the chance. But oh my giddy aunt it is hard. I have increased my day by an hour each day ( did an hour a day in week 1, then 2 hours, then 3 etc) I did my first full days this week and I am on empty now and the head is bad. I am still under my doctor and he wants me to reduce my hours again as he is not happy as the health balance is tipping to much but I am determined to stay strong.

    It is horrid!!! I can remember the neurologist saying in December the thumb rule is for however long it takes to start to feel better you need that to recover. He was amazed as was my doctor that I have done a full week.

    Thankfully I have a very supportive family and my daughter keeps me determined.

You may also like...