People are not listening to me - and I'm not sure what to do next

[EvergreenIsBest]

I was a fit and healthy person till the start of this year when I suddenly came down with a throat virus (sore throat, mild temp). I was running twice a week, walking the dog and was extremely happy and content with life.

About 2 weeks after I got the virus, I had the most dreadful fatigue. My periods also stopped at the same time. I just assumed it was a bad virus and took a few days off work but even though I was resting, I wasn't getting better. I went to a private GP and he swabbed my throat and said it wasn't strep throat so didn't need antibiotics. There is a huge history of ENT cancer in my family so I saw an ENT who said it looked like reflux laryngitis and to take PPIs for a few weeks and 3 weeks later, my horrendous sore throat was gone. Which was great! Except the fatigue hadn't.

GP thought it was the menopause as my periods had suddenly stopped so I started on HRT but it's not made a meaningful difference. Everything has been tested in my blood (autoimmune/thyroid, you name it, they've tested for it) but nothing is showing up as being wrong so the only diagnosis I can be given at the moment is post viral fatigue. I can't do any exercise, I can't even walk the dog I am too exhausted and I am literally holding onto my job by a fine thread. I am a single parent so I can't stop work.

My big issue is that no one is listening to me when I say I can't do things. I cannot do anything outside work at the moment. I am managing one day a week in the office, the rest of the week I am WFH. I have explained to my friends and colleagues repeatedly what is going on but absolutely no one seems to get it. While I'm sat here now, someone has just asked if I want to 'meet them for a drink this evening'. I'm in bed by 7pm every single night at the moment just to get more rest. It is incredibly hard to explain this to people who cannot understand how my body is not recharging at all at the moment, despite how long I am resting. I suspect it will just take time. I had glandular fever as a child and I was off school for 2 full terms in bed because it affected me so badly so I suspect this is a similar thing.

I get the feeling people think I am taking the piss but I'm really not. I am completely exhausted and anything I do, especially physically, just exhausts me more. Does anyone have any words of wisdom as to how to communicate this to people better?

Do you mind saying what age you are?

If 34 then it is less likely your symptoms are menopause related, if you are 49 then much more likely.

Could it be ME/chronic fatigue?
have a look at spoon theory to explain to others..
https://www.rcot.co.uk/news/spoon-theory

I'm 51 so menopause is a possibility and my periods have not come back properly since then. I have had the odd one but they were regular as clockwork till the start of the year and now I've had 2 since then. I'm now on 4 pumps of oestrogel, androfeme (the testosterone cream) and utrogestan for part of the month but I've not seen an uptick in my energy levels and I've been on it all for 9 months now (my testosterone levels were non existent before I started on all of this). I think there might have been a small improvement when the testosterone was added.

It could be ME/Chronic fatigue - thanks I will have a read. I think if I told people I had that they would be even more disbelieving. It was all so sudden. One day I was walking the dog and the next day I couldn't get out of bed!

If it started with a sore throat, it could be glandular fever! It is well known for causing me/CFS like symptoms. You could ask the GP to test and refer to chronic fatigue clinic if there is one near you.

Did you do a covid test at the time? It sounds exactly like long covid (although symptoms are very similar to CFS too). Covid can also impact menstrual cycles, which made me wonder too.

I’m 46. At the end of last year I had whooping cough, haven’t felt well since and have with diagnosed with fibromyalgia. Feels like a catch all diagnosis, feel stuck in limbo as can’t see how I will get well again.

Dog walks caught my eye - have you been tested for Lyme Disease?

OP, I suffered the same exhaustion when I was a couple of years older than you.

My relationship ended because ex said I was always too tired and he wasn't getting any sex. I staggered on for another year until I fell asleep at 6pm before I'd cooked my ds' supper and he said 'Mum, why are you soooooo tired?'

The appt letter for routine mammogram arrived next day and when the results came back they were positive. All sorted now, but the exhaustion was unbelievable.

Have you been checked recently? It might be worth asking for an appt.

I haven't been tested for Lyme as I was told it was unreliable? I had very bad viral symptoms at the start of the year (and in my blood tests) but those have largely gone now and I appear to be free from viral symptoms other than the fatigue. There is no ongoing infection in my blood or anything. I will ask about the test as I haven't had that one done.

Have had glandular fever and they tested my blood to see if it had reactivated which it hadn't. I kick myself but didn't do a Covid test at the time because I just didn't appear sick enough (didn't really have much of a temp, wasn't coughing etc.). Long Covid is basically just post viral fatigue so I guess if it was that, I'm in the same position anyway.

I asked about the chronic fatigue clinics but they aren't taking referrals due to so many people having long covid and in any case, it just sounds like talking therapy and they bunged me a few handouts about pacing and resting and that's it. There's no treatment if it is that it seems so either it goes away on its own, which apparently if you've had post viral fatigue before and got over it there's a good chance it will, or it doesn't and you end up with ME/CFS. I'm not sure how long I have to wait to see whether it goes or not. I guess the point of inflection will be when I have to give up my job because I can't work anymore. I don't think I'm getting worse, I'm just not getting better.

thanks for listening - literally no one else will talk to me about this!

@Meadowfinch I have had a mammogram (weirdly my first NHS mammogram appointment came through not long after I got sick) and it was fine but I have been wondering whether i should push for a PET scan. There is a lot of cancer in my family (my mum and her brother both died from cancer well before their years). I'm so sorry to hear your story and I hope you're getting the treatment you need and feel less exhausted now.

Have you had a thyroid test? Just asking because my friend has an under active thyroid and before he was diagnosed and on medication, he was exhausted all the time and just wanted to sleep and sleep.

@Noseybookworm yes thyroid all good, thanks for asking

@Pickleton1992 yes that is exactly it. And it does feel like that all encompassing pregnancy fatigue so you have my sympathy! I am getting a lot of 'you'll be fine' and 'it will be ok'. I don't think people like to think of other people being unwell and don't know what to say. I am making a plan as to what happens if I don't get better. I have checked all my life insurance/critical illness and post viral fatigue/ME/CFS/Long Covid, whatever it might be, is not covered so if I have to stop work, I need to sell the house and massively downsize. Luckily my kids are older but I am on my own in terms of paying for bills. I spoke to a friend about this and she was like 'don't be ridiculous, you don't need to sell the house' but it doesn't feel ridiculous. At the moment, it feels perfectly possible. Weirdly, I think my boss is starting to get it as he can see how tired I am. I also feel really awful for people who have long term medical conditions that impact them because if this is what other people's attitudes are towards them, I can see how demoralising it is.

This thread has been massively helpful though. I think i will ask about the PET scan and a MRI. Although i don't have obvious symptoms, my grandmother had Parkinsons and hers started with terrible fatigue (and I do have minor tremors in my fingers but I've always had those and don't think it's related). I would rather be working on eliminating things as at least that gives me something to do while I'm trying to rest!

have you had iron, vitamin D and vitamin B12 levels checked?
If they are low they can make you feel quite tired.

I am sorry you're struggling. I've had a grim couple of years health-wise with nothing anyone could diagnose initially. Fatigue was a major symptom though there were others, too, such as nausea. Menopause in the mix. My fatigue turned out to be Hepatitis C. I had mildly elevated liver bloods for years so I am sure they could have found it earlier but I am so out of any demographic that might be expected to have it I guess it just did not pop up on the radar until more obvious possibilities had been checked.

It is true that other people simply don't get it. My husband did but I stopped bothering to tell most people any details and simply declined invitations, citing ill health. Members of the wider family were the worst for trying to whip me on. Clearly you need your boss on side so I am glad to read that he is starting to get it. Hope he is supportive.

You do need to respect crushing fatigue and rest as much as you possibly can. I hope you get to the bottom of it soon and especially that you feel better soon.

It sounds like exactly what happened to me after a virus in 2008.

Please push your GP around an ME/CFS diagnosis. It's a diagnosis of exclusion anyway so they should check for anything else it could be along the way (especially rule out diabetes and thyroid issues).

Getting a diagnosis will mean you are eligible for reasonable adjustments at work and that people around you may be more understanding.

The clinic I went to was talking therapy (you're right there) but it was actually enormously helpful to me in terms of recognising warning signs, learning pacing, learning to be assertive about what I can and can't do. So don't dismiss that service out of hand. It took 8 years before I started to find much significant improvement, I have mostly maintained the improvement although covid in 2022 has set me back a little again.

In the meantime it's wise to do what you reasonably can not to catch any other viruses which could affect you further. Things like a small air purifier on your desk at work (IKEA sell some for £30) may help, bigger HEPA air purifiers at home to turn on when you have visitors, also an antiviral nasal spray before and after seeing people (eg Boots Dual defence). Get private flu and covid vaccines if you are not eligible for them on the NHS etc. And wear a mask where practical (especially supermarkets, public transport, any health settings etc).

Let's hope the government start to do something about the amount of preventable infections circulating and the increasing amount of people suffering like this :-(

Good luck, I hope you find some answers and start to improve soon 🍀💐

Thank you all and I'm sorry to hear so many other people are suffering. You have my sympathy!

I will keep on pushing with the testing and see where I get to.

My vitamin levels and iron are all fine.

@Cranarc I'm glad they figured out what it was before it damaged your liver. I was raped by someone with hepC in the late 90s but luckily I never contracted it. I got them to test again now and it wasn't there. It's much more treatable now isn't it.

@User3456 thanks that sounds very familiar. I was wondering whether to pay for a flu jab but I'm also really worried about making my situation worse. Do you respond ok to vaccinations? I'm worried my immune system is all over the place!