Fatigue?

[Jcrome]

Hi everyone,

I am 6 weeks post Viral Meningitis after being in Hospital for 5 days, and whilst headaches are calming down, I am often very fatigued and have good days followed by very tired and achy days if I do a few activities.

I haven't had any kind of follow up so I really don't know what is normal for recovery. Is ongoing fatigue and relapses of fatigue part of the normal recovery process?

I had started going back to work, and whilst I felt ok at the time, the next day I would feel very tired and have muscle ache.

Anyone else's experiences gratefully received.

Thanks,

Joe

[Maisie23]

6 weeks post VM is very early in recovery, and you are doing well to be doing so much. I didn't attempt to go back to work until 3 months, and even then it was too early for me. I am now at 6 months post VM and still experience headaches and fatigue amongst other symptoms.

I am back at work, but part time.

It takes a while to get over VM, and you will need to learn to pace yourself, not push yourself too hard, and take plenty of rest.

I have had a follow up from neurologist, but I had to keep asking for this. Don't be afraid to ask your GP for this.

Hope your recovery continues well!

[Jcrome in reply to Maisie23]

Maisie,

Thanks so much - that's really helpful. I am the type of person who gets ahead of themselves but I'm starting to take this VM recovery more seriously after having severe fatigue this week.

Have you found that if you do too much you then pay for it for the next few days?

It also helps me to manage the expectations of my colleagues and friends as they thought I would be back to normal by now!

[Maisie23 in reply to Jcrome]

That's the hardest thing, as many people think you should be 'normal' quite quickly, but it does take time.

I am also the type if person that thinks you can carry on and push through the symptoms, but if you do, recovery takes longer and you really suffer for it. I remember going out on my bike keen to exercise, then could barely move for a week! So my advice would be to listen to your body, take it easy and rest a lot, hard though it is.

Take care x

[rbwazmotown]

Hello - I am 14 months post VM diagnosis and still have bouts with fatigue and muscle ache. For awhile I thought I was never going to get better, but slowly I have. I went back to work after 5 weeks which was way too early and is probably the reason why I have been having such a hard time. You really have to listen to your body and rest when needed I have found. You will get better, everyone's timeline is different. Hang tough!!!!!!!!

[Jonad724]

I am 12 years post near fatal VM and I would wholeheartedly echo the sentiments above. If you don't listen to your body and just keep going believe me the VM has the last laugh and it will knock you back. I was off work for just under 6 months and away from strenuous exercise for 5 years (I'm a triathlete) but slowly I got less tired and whilst I will never be the same as I was pre VM, and I have a range of after effects, and Mollaret's to boot, I have completed two half ironman triathlons since 2012 so there is light at the end of the tunnel. The key is though rest and recovery and enjoy the good days but don't do too much and ride out the bad ones. The more you listen to your body now the easier your recovery will be. I also write a blog on this site which might help as well. Good luck. Jonathan

[Covenham]

Hi Jcrome - welcome to this site; it'll be a great support for you and give you the chance to read of other people's experiences.

I had Meningoencephalitis in August 2011 and I'm still in recovery. Like so many of us, we believe a week or so at home and we'll be back to our old selves again

The hospitals and GP's rarely, if ever, explain the Meningitis condition to us properly or tell us what to expect once we are discharged and back home.

You need to 'listen to your body'. If you feel tired then rest, this is key. I tried to solider on and pretend all was well, and it wasn't long before I fell I'll again. Meningitis severely compromises our bodies' immune system and we become 'easy targets' for passing viruses. In my case it was Chronic Bronchitis and then Acute Pneumonia.

I urge you to get lots of rest - sleep whenever you feel like it; your body is telling you to for a reason - eat well, try to get some fresh air every day, and know this too will pass in time

Take care and best wishes.

[martinspiller]

Yep, this is absolutely normal. You'll have physical and emotional weak moments for quite some time, but their frequency and intensity will diminish. For me it was going up stairs that was difficult - I often just had to sit down as my legs were giving way. At first the events might be ten a day, easing off to about ten a week, then just occasional - but always unpredictable. I went back to work feeling I could do it, but I was wrong, and I soon realised I should have stayed home longer. Medics can't predict how you'll be or for how long symptoms will last or recur, so it's no surprise you've not had any follow-up. You could ask your doctor about having a medically- recommended phase return to work, even though you've actually started; your employer needs you back fit to work later, not a liability now. You'll feel crappy for a while, and it may get labelled post-viral fatigue, chronic fatigue, depression, whatever... but be assured you will get better. Just don't be in a hurry, or you'll actually make things worse.

[Jcrome]

Thank you all for taking the time to comment and share your experiences. It has helped me to adjust my expectations and focus on rest rather than focusing on getting back to work as soon as I can!

[Bonkitty]

Hi, I am almost 6months post VM and tried to return to work twice but wasn't able to manage it. I still have headaches and tire easily. I have had many relapses usually if I try to do too much which is now getting very frustrating. I have a meeting with occupational health this week to see about return to work. The best thing I have done is to rest a lot and try to accept it will take a while. I am also eating very healthily and drinking a blitzed up juice of kale, spinach, carrot, lemon juice, cucumber and ginger. You can add an apple or pear and celery too. Find this really helps!

[JuanitaMorrow]

Hi Joe I ended up in hospital in July with viral meningitis. It's been about 8 weeks now but i'm still weak & needing to rest for a lot of the day. I can do a few light tasks now between rests but then I get pain in my back (possibly muscle ache) and I need to lie down again. A small amount of screen time brings on a migraine too. It's hugely frustrating that progress is so slow but my doctor has emphasised to me the importance of listening to my body and resting when I need to and not pushing too far too soon. She says average recovery time from this is 6 months. I've been making super green smoothies and that seems to be helping some. All the best with your recovery.

[Captainbeaky]

Recovery from VM is frustratingly slow. I'm coming up on 12 months post VM, and things still aren't right.

I've broken bones and dislocated shoulders etc before, and you can tough it out because your body calls time. With VM, the warning signs can be non-existant or very subtle, and pressing on will set you back. You have to pace yourself and carefully manage your recovery.

I was lucky - I didn't have VM too badly, and I managed to keep working , albeit at reduced hours ( I have a desk job). But something like 1 in three people don't make it back to the same job.

Look up "mild brain injury" for more info on what has happened.

Take it slow - pace yourself. You will recover.

Some excercise helps - like swimming, and concentrate on a good diet.

But remember that you can't tough this out - it will set you back.

[Jcrome]

Hi everyone, just again want to thank you for the replies. Now 9 weeks post VM, and still getting a lot of body ache and fatigue. Thankfully, as many have said, when I manage to rest properly for enough days in a row I do begin having good days, and my set backs always come when I do too much and get ahead of myself - physical exertion particularly. I went on holiday to visit family last week, and after feeling amazing in the sun (all my headaches disappeared after 2 days of constant sun) I went for a swim - 2 days later became extremely fatigued. Headaches now back if I spend too long looking at a screen but not a big problem as I am not back at work yet.

Has anyone used the work and techniques of Dr Myhill, a leading chronic fatigue specialist, in recovering from meningitis? I wonder if the programme she uses would work for us in some of our symptoms whilst recovering. drmyhill.co.uk/ Her book gives a brilliant and fascinating insight into WHY fatigue occurs, it has helped me look after myself and give me body time to rest.