Struggle with teenager viral fatigue

[BrightMorning]

It's been a hard ride for DC who has been off school for a month with glandular fever type symptoms. Blood test shows glandular fever in the past and a separate current virus, but the current virus is something other than glandular fever because the blood test showed that was an old positive glandular fever result (>4/6 weeks ago),so not current/acute now as we didn't even know 4-6 weeks ago it was glandular fever!

Anyway, this viral episode looks like and acts like glandular fever in that it began with sore throat and swollen glands and has left the most debilitating fatigue ever experienced. Every week goes by we are looking eagerly for improvements but aren't getting any that last. It feels like strength is gained slightly by noticing that moving round the house is less hunched over and slow than it was. But every time we put it to the test with a short drive out in the car or to a quick drink in a cafe, the consequences aren't worth it because it sets the fatigue back by days. It really is one step forward and two steps back, which isn't progress at all if it happens too much!

School have been brilliant but even with that, there is pressure to get him back asap, and I'm beginning to worry about how long this will last. AIBU to want to do all I can proactively to assist his recovery or is it a simple case of rest, rest and more rest, and don't expect a single thing until it's volunteered?

I know there's a certain risk of depression with long term illness so I want to take him out to remind him there's a world out there, but when it depletes him so drastically the payback feels too costly. I know there's a thing about de-conditioning but it's impossible to get him to do light exercise when he can't even get himself a drink. Socialising is out of the question because conversations are exhausting, as is concentration on school work.

Is there anything i can do to help and speed up recovery without causing any guilt for being ill in the first place? i googled it and found horror stories about 6 months off but not a lot about proactive steps.

Following, my dd's boyfriend has almost exactly the same issue! He's 19 and struggling with daily life.

I'm sorry to hear that. How long has it been?

Let him rest and recover. Lots of vitamin D and a wholefood plant based diet, omega 3 oils and lean protein. Minimal junk food and gentle exercise. As he recovers, encourage him to eat well and stick to a diet low in saturated fat.

Don't mess about with glandular fever. It is wildly underestimated because for many it's a mild illness but when it's not, the longterm consequences can be severe. For example it is believed to be the virus that triggers multiple sclerosis in those with a genetic predisposition.

May not be the same as I had it as a teen then frequently into my twenties.
It caused me fatigue for a long time and ruined my immune system even now years later (30 now) . I had it as a teenager first (18) and it seems to be the type of illness that still comes back for me when I'm run down

Hope your ds feels better soon. Take it easy, lots of cold drinks and rest. Poor thing x

Might be worth getting a tonic from the chemist like metatone. I used to swear by Tropicana orange juice but not good for teeth/blood sugar etc.

Thank you all for your thoughts on this and your understanding.

Honestly if you don't let him fully rest now it may be a longer recovery. I had glandular fever in my late teens and tried to push through, full recovery from CFS/ME as a result was 10 years.

I have had Long Covid for 3 years now and this time I stopped and rested more once I realised it was tipping the same way. It was out of work for over a year and still only part time at work.

I will post some useful resources tomorrow for advice on recovery from post-viral illness. It really is a case of very slow paced activity at first.

I have an interest in the relationship between low energy and mitochondrial health.

There's definitely a relationship and looks to be a key factor in chronic fatigue.

Goodness knows if it'll help you and your son, but you could look up how to improve mitochondrial health?

I'm the mad woman on the internet today.... 🤣

So sorry he's going through this, I caught it as a late teen and was really horrendous, the horror stories don't lie. I pushed myself to recover but the fatigue left me completely unable to cope with life, dropped out of school during my a levels and plunged into a horrible depression. It was easily a couple of years before I began to feel like myself again. I think with the knowledge of viral infections we have now I'd be more likely to go over the top on rest, eating healthy where possible and vitamins until he feels more able to cope. Even a trip to the bathroom can feel like a mission x

How old is your son?
Is he in a very academic school with lots of pressure or lots of testing/exams? Is he stressed or anxious?

I ask because there is a link between stress and in particular for teens, academic pressures and activation of EBV (glandular fever). It sounds a little woo but there is a lot of information online about this.
A study here was done on teen girls but I’m presuming is just as relevant for teen boys:
https://onlinelibrary.wiley.com/doi/abs/10.1002/jmv.1030
There are also lots of resources online and studies showing that stress in general is indicated in EBV in teens.

Let him rest, rest and rest some more- glandular fever is a big one for starting M.E- the post exertion malaise you describe is classic, and if that develops you could be looking at years.

Ignore the school and listen to his body- if there is no improvement in 3 months get him seen by a decent doctor who knows M.E.

Hello OP.

Post viral fatigue syndrome can progress to ME if you are not careful, so let him rest as much as possible. The disease mechanisms are not yet well understood but there appears to be some kind of positive feedback loop involving exertion resulting in even further reduced capacity. See some of Ron Davies' research.

People make the mistake of pushing for improvement but it has the opposite of the desired effect in this condition. You need to form a bit of a protective bubble around him to bat off any pressure from peers, school, even doctors/hcps to over exert himself. Don't worry too much about deconditioning as a youngster can easily regain muscle strength after recovery. Over-doing it can hinder or prevent recovery and that'll be much worse for him.

I wish you the best of luck because these awful post viral illnesses are very debilitating and not well understood (actually scandalously misunderstood). He's fortunate that he has your kindly support and he will need it.

https://meassociation.org.uk/me-cfs-symptoms-and-diagnosis/

https://www.yourcovidrecovery.nhs.uk/children-and-young-people-with-covid/

Kids suspected of having Long Covid can be referred to paediatric teams after 4 weeks of symptoms. You do not need a positive test result for GP to refer. As you do not know which virus caused your son's post-viral fatigue they can refer him under this criteria. This should help him access support from people who have been working with children and teens suffering from post-viral fatigue symptoms.

Long COVID Kids have lots of information about interacting with schools that might help as does the ME Association.

Pacing

https://www.longcovidkids.org/post/pacing-penguins-supporting-kids-living-with-long-covid-to-manage-their-energy

https://longcovid.physio/pacing

Fatigue

https://www.uhdb.nhs.uk/fatigue-education-course/

Make sure he is eating nutritious foods that are easy to digest, taking a multivitamin and keeping well hydrated.

Gentle movement and activity

https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=covidinfo.jhu.edu/assets/uploads/sites/10/2020/07/Bouncing-back-from-COVID-guide-to-restoring-movement.pdf&ved=2ahUKEwiCyobzjI-FAxXXU0EAHfWIA6EQFnoECBIQAQ&usg=AOvVaw1gVKxfMA3nUPB9lEIrUxgm

This is such a huge lot of information, I am so incredibly grateful to you all.

With regard to stress, he's had much more than he should have and I agree that trauma can cause EBV. I speak from personal experience myself too, so I am convinced of it.

The information about children and long Covid is so helpful too. It just gives hope that there is acknowledgment out there and some assistance available.

I read some helpful information from the Bristol nhs website overnight about viral fatigue and interested to see it said rest even if you don't need to yet: to the point of getting bored. It helpfully listed some restful things to do and today we follows an actual plan... it was fascinating to see how his fatigue was so severe he slept not once but twice in the daytime, just in the 'enforced' rest periods. I hadn't realised he has been pushing himself even at home, watching YouTube or fiddling quietly with his computer, as being made to stop before he's overwhelmingly tired made him sleep within about 7 minutes.

We also have set up a healthy eating plan for little and often and he's eaten more with that today than he has all last month! So I know one day doesn't necessarily mean we've cracked it but I'm so hopeful that we are on a positive trajectory for his well-being.

Really appreciate your help with this and I feel the support from fellow parents. It can be a lonely battle sometimes!

My daughter has chronic fatigue and has been off school for the last 2 years. She didn't get it from a virus so I can't help you with that side of things. But in terms of getting your son to do things I would say really listen to his body and what he can do, and only do what he can do without then needing lots and lots of rest because if you overdo it it just sets you back as you're discovering, and if it does develop into chronic fatigue or ME then your son could be off school for a really long time like my daughter. I honestly think it would be better to just let him rest and do what his body needs to do to recover in order to try and avoid developing into chronic fatigue.

There are support groups on Facebook if you search for them which can be helpful, but I would avoid the ones run by people who actually have chronic fatigue because some of those stories are really depressing and scary. I hope your son recovers and doesn't get as ill as my daughter because it really is an awful thing to try and live through.

Also just remembered this video and the following ones in the series. I used this early out in my COVID recovery to really break down pacing and plan activitiy/rest. The hardest thing I found was how to pace properly as like you have identified the cognitive activity can massively add to the fatigue. Your son will need you to to help him with planning his daily activity and rest breaks as it is cognitively challenging.

That sounds so hard for you and your Daughter, I am so sorry to hear it but thank you for telling me your story. I really appreciate you adding to those who came before you because it really helps cement my resolve to stand firm against anyone who pushes him too much. It’s not worth risking his future like that. I wish your daughter full restoration to health and energy. It must be all the harder to not know where it comes from. Not that knowing it was a virus helps all that much, you wouldn’t believe how many people dispute the blood results!

Have a look at spoon theory - I find it a good way to understand how folks with limited energy need to live and how an activity that is nothing to a healthy individual can really knock a person with health issues sideways. I have a chronic condition and it's really hard to get pacing right - especially when you're younger and want to be out doing whatever your peers are. But the idea is not to do too much, even if you feel good because (as you've found) it can have a knock-on effect. Maybe rather than a trip to a cafe at the moment, bring your son a takeaway (or ring him up & show him the cake counter so her can chose what you bring him home!). I hope things improve for him soon.