Fatigue four years post viral meningitis

[Claudeminh]

Hi there, I had viral meningitis on October 2012. I am currently working full time in the education area. I am experiencing some crushing fatigue and brain malfunctioning at different times. Usually when I am not so busy so the adrenaline doesn't keep me going. I have suffered chronic migraines post meningitis for four years now but the 3 monthly botox, now in its second year is incredibly effective a lot of the time. However, I am wondering how long I can work like this. I am 47 and cannot imaging being like this in ten years and still working full time. I think the disease has done something very profound in the energy production department of the body. Its just so common with vm survivors, they all say the same things about exhaustion and fatigue. I suspect there is potentially a ten year turn around from a serious disease. I had a characterised' very severe' version of vm. Hence, four years later still struggling. I think it will be better in another 6 years or so, but that its realistic to expect ten years of symptoms. What do the rest of you think? I just experience profound fatigue at a metabolic level at different times during the week. I have to sleep about 9 hours a night or it goes to hell in a handbasket.

If I don't sleep enough, I have serious brain fog and low blood sugar feeling. That makes me want to eat a lot too. Also, I cannot surf like I used to as the hold downs under the water make me too fatigued that its dangerous. If I get exhausted out in the water, I cannot summon the energy to get away and paddle to safety in time. So, I can only go out when its very small and calm, so that I don't drown. ITs like the body is out of energy.

The only way I can improve it is to go small amounts of exercise regularly and not a lot in one hit. This impacts on going to the gym as well, cause if I over do it and then work a lot it ends in exhaustion. I just wondered if anyone has heard anything from drs about energy production in the cells? I think it happens at a mitochondrial level, and if so, what might have happened during the disease duration?

Or is it mimicking a brain injury, where you experience such fatigue? the thing is, this is not a typical brain injury and there is no MRI recognised damage on the scans. No scarring, nothing. So.... why does it keep happening? I want answers.

[Jonad724]

I had near fatal VM 15 years ago this year and the good news is it does get better. How much better? Well I've completed three half ironman triathlons since 2012 with another this year plus a half marathon too. It is though very much about taking small steps and as you have discovered if you push yourself too hard then it will knock you back. Exercise wise little and often is definitely the way to recover. You may find that stress is also a contributing factor. VM is not mimicking a brain injury it is a brain injury, it might not show up on scans but your brain has been through a trauma and you'd be surprised how little the medical professionals know about the brain and medicine in general. I had to take five years off from vigorous exercise to let my brain settle down and when I came back to triathlon it was little and often and very gradually building back up.

Your body is putting all its energies into recovering so it's hardly surprising you feel tired if you do much more. Things I found help are O-Enzyme Q10 tablets and also 1000mg Lysine. Co-enzyme q10 helps energy release and is called 'nature's spark plug' so it's worth a try. Please feel free to message me if I can help and support further and also you might find my blog posts on this site useful too.

All the best and good luck, Jonathan

[AlliG]

I can relate to this. I'm only 10 months post VM & I've found that I get a boom & bust experience. I feel okay at the time & push myself but then spend days recouparating to make up for the energy used. It's frustrating but I guess it just takes time. It's very hard for those who have not experienced this to understand. I have to sleep for at least 2hrs during the day. It's intrusive on work & play. Without day time sleeps I'm a zombie. I just need to recharge.

I hope things improve for you soon, I hate the thought of this for years

[Blim]

Hi I had bacterial meningitis but it had left me with many of the same difficulties. Nothing shows up on an MRI but my neurologist says it is a brain injury (although others along the way haven't but I show them the neuro report). I'm in education but only work 2 days a week since I was ill 4 1/2 years ago. The neurologist says I haven't got chronic fatigue (ME) because it is due to a brain injury but I get very fatigued and am still learning to manage it. I used to be able to swim a mile easily, now I am wiped out after ten lengths. I know it has improved and I have also learned to manage it better but whether it will be back to how it was before in 10 years - who knows?

The neurologist did say when I am tired it affects short term memory, my speech (the words that come out aren't the words I'm thinking) make my headaches worse etc.

He suggested trying to manage it in a similar way to chronic fatigue.

I don't mean to be negative and I hope you are soon seeing improvement but I have found the progress to be slow. Not helped by the BM also messing up my vestibular system. But it sounds like you survived a really bad bout of meningitis and hopefully if you look back to where you were 4 years ago you can see that things have improved a little.

Take care

Blim

[Bonkitty]

Hi, I have the same kind of problems as the ones you are experiencing as we have talked about before. Some days my energy levels are good and other days I feel drained and gave to have catch up sleep days. I haven't made it back to full time work as my job is too demanding and I know I won't manage it yet . I had glandular fever when I was 18 and that was a similar thing taking years to recover from. I am now trying to accept the way things are but I have to plan things out and be mindful of what I can do which is restricting. I am trying to build up my exercise activity and stamina but some days I just can't get going. So I know exactly how you feel. I am eating a super food diet and drink turmeric and coconut oil to help and I think what I eat is really helping. I have also started doing things that I didn't have time for in the past such as I am doing a dog training course . This makes me happy but doesn't expend too much energy. I am also hoping to climb Mt Snowdon this year and I think with a bit of determination , good food and well managed training I will do it . Take care . Xx

[Bonkitty]

Also things that are helping me: vegetable smoothies, seeds, nuts, shoots etc high energy but low fat foods.

I take Qi Ribose magnesium supplement for energy

Vitamin B12 for energy

I drink aloe Vera gel

Drink coconut oil, turmeric and honey.

I alternate all the above rather than take them all the time. They seem to help and I feel and look much better... People telling me so now!