Log in
Meningitis Now
4,868 members1,631 posts

M.E anyone experience M.E after viral meningitis? And extreme fatique?

I cannot leave my apartment symptoms are so intense

21 Replies
oldestnewest

Dear Sunny308,

I had severe fatigue following viral meningitis . At first I had to sleep and rest lots. I was bed bound and could hardly walk around the house for 18 months.

Then I had to slowly build up my stamina . Recovery has taken 4 years but now I am doing normal things and I can walk 14 miles, climb mountains , swim etc. I still need lots of sleep and I have tired days but these are getting less.

It can take a long time but you should recover in time .

Take care and embrace the rest .

Reply

i am post 9 months vm. still feeling extreme fatigue and muscle pain. is there anything apart from REST which can help. also did you experienced decline in immunity after vm?

Reply

I ate a healthy diet and drank a lot of green smoothies .. lots of spinach , kale, avacado.

Also drank turmeric, hot water, honey and black pepper. I took various vitamin supplements too, magnesium , zinc and B complex .

I had acupuncture to help raise energy levels and this was very helpful.

My immunity has been good since, in fact better than ever before.

I do take care over avoiding infections and stay clear of people with colds etc.

It has taken a long time to slowly build myself back up but I seem to be much better now.

Hope this helps .

Reply

Thanks.....

Reply

Hi rohitcontra. I had VM in May and I am still fatigued and yes my immune system has been horrible. I am going to see my neurologist this week, have been to my primary twice and I scheduled an apt with infectiuous disease doctor to try and figure out why I feel like this all the time.

Reply

Tremendous hugs. You are not alone. Its such a truly awful experience as it is and then to have M. E. symptoms on top is scary and incredibly debilitating. How long ago did you have viral meningitis? Have you been diagnosed with me or been referred to a specialist ME-CFS clinic yet?

Take a look at the factsheet on the MN Downloads page website about viral meningitis. It has some helpful information about the after effects you can experience. 83% recovere in 6 months a further 10 within a year. Only 7% experienced symptoms longer than a year.

It is sadly possible to develop ME or have pre existing ME exacerbated.

I was officially diagnosed in September last year. It turned out that I had glandular fever decades ago and diagnosed with pvfs then but not told. The VM step changed its severity from almost imperceptible to every symptom going and largely housebound and I've so far had 2 unsuccessful attempts to return to work and a mega relapse /progression in August.

I started cranial osteopathy in November under the MNs scheme and it has helped some symptoms and I've been trying to do pacing.

If I can help, or just listen, let me know. X x

Reply

Have either of you had severe hyper sensitive noise intolerance, your head go numb to stimuli? And too much movement make you ill and sick... boinkitty were you able to watch tv read go on phone etc? I cannot Did either of you get terribly sick at times feeling like dying?

Reply

Anyone experience pulsate tinnitus when move around and ringing in the ears? Did your symptoms come right after viral meningitis?

Reply

Hi Sunny. Yes I have had all of those things. They didn’t come right after but a few months after. I had headaches initially but now I feel like at certain days during the month like right before my period I get bad migraines, Neck pain, spine pain and fatigue. The ringing in the ears- yes and nausea from too much movement yes. I am trying to figure it out and am staying positive. I just need to working as a Clinical Director at a facility and taking care of my 3 babies.

1 like
Reply

I had VM in August and was in hospital for five days. After a few weeks I noticed I couldn't (at times) string a sentence together very well and also went somewhere and wondered why I went there. Sometimes I will go up to a counter (say in the post office) and get reallly confused. I can't stand crowds and just about get through a shop (Tesco delivery has helped)

I once woke up falling around like I was drunk and was prescribed Cirtrazine?

As far as going out is concerned I use Google Keep on my phone which lets me know what I need to do.

Google Keep is fantastic I use it to prepare a list of things to do, bus numbers and medication. It is great for shopping lists

I would download it and give it a whirl - You can even share your list with others. It is so simple

David

Reply

10 months post vm. still feeling a lot of fatigue and muscle pain.

Reply

It has taken me 3 years to feel a bit of normal person! But still i have to rest every afternoon etc. Yesterday i did to much so today is not a good day. So still not there yet... but it sooo much better and everyday i am happy to feel like this and not like a year, 2 years ago. It takes time!! Lots! Be kind for yourself! Don’t push to hard (i did, i had to learn how to live my new life) Also my osteopath i started with last year is amazing. I would recomend going to one!

1 like
Reply

Did your symptoms get worse before they got better? And when did they start after VM? I'm bedridden and unable to do much but go to bathroom

Reply

Hi Sunny, the first year was really really bad... i did go outside for walks but that was it. And they where short walks. (Max 20 min on a good day)I couldn’t go to grosserie store that was too much. Had to wear sunglasses even inside. I listend to lots of books. Did meditation and yoga nidra. That really helped with staying positive and giving me strength to hold on and have hope. Im

So sorry you are feeling like you are right now. Please be kind to yourself!! Rest between doing things. Do you have help from somebody who knows about after effect of VM?

Reply

Thank you I am bedridden and make it to the bathroom now once a day I literally can't do anything

Reply

How much did you rest in the first year?

Reply

All the time... i was in bed a lot. I got headaches if i would stand op too long.. i had to close my eyes after being open for an hour. This time got longer and longer. With time everything got better and better. Stayed in bed less and less. Now im in bed only for 40 min in afternoon.

1 like
Reply

I seem to be getting worse

Reply

Did you have pulsate tinnitus and I feel funny in head when stand too

Reply

Hi all, I was diagnosed with viral meningitis zoster a couple weeks ago. Even as a cancer survivor who went through a rough bout of chemo and numerous surgeries, I can say this has been far more painful and scary. I am still on acyclovir 3xs/day for the next week. I know it’s helping but it’s making me sick simultaneously. I’m not as far out as most of you but I am a very active person and was wholely unprepared for the fact that I would be in immense pain for an extended period and barely able to get out of bed. To the person who said it feels like you’re going to die, I agree. It absolutely feels that way. It feels like dying while alive and as close to a zombie transition as I can imagine. It is sheetlet maddening how I can feel ‘almost normal and fairly clear headed’ for an hour or two and savor every moment of it (not that I am able to get up and do much) but be in tons of pain and sickness very quickly out of nowhere right after that and lasts hours. Major sound sensitivity which sucks because I love music. Major light sensitivity and extremely anxious because I dong know what around the corner one minute to the next. Glad you are all on here sharing because doctors really don’t prepare us for this.

Reply

Yes. It would get worse while being vertical or after talking or lots of noise

1 like
Reply