Scared and need a handhold

[Grapesandtea]

I’m in tears and cannot sleep tonight as I’m scared.

Have been sick for 8 weeks and broke down after putting my toddler to bed tonight. I’m usually strong, healthy and resilient but something broken in me tonight.

I have been sick with a virus (negative for covid and flu A) since end of November and just cannot get better. No one can diagnose me and I cannot function. Had bad cough, shoulder and chest pain, palpitations, few blackouts, dizziness, throat closing and cannot do anything without getting chest pains and getting breathless. It is so bad i cannot leave the house or walk more than few minutes. Had 2 sets of antibiotics, inhalers, steroids, X-ray was clear, heart is fine just episodes of tachycardia.

My toddler asked about grandpa who died of lung cancer few years ago and i lost it, couldn’t stop crying. I feel like I will never get better and maybe I have it too.

I'm so sorry, that sounds awful. Who do you have to advocate for you? And by that I mean go with you to a doctor's appointment and say you need more help and more investigations done. I understand why you're scared but seems unlikely to be lung cancer unless you've left out some key information.

I have been ill for prolonged periods when it feels like it will never go (weeks into months). It's so depressing but it is likely that though it's dragged on it will eventually get better. Hang on in there. It's scary but you are still here.

Also, I say this often on here but has your iron / ferritin levels been checked? Anaemia is really debilitating and would account for quite a few of the things you've mentioned.

Ohh I'm sorry to hear that you're struggling so much at the moment.

You need to keep going back to the Dr and insist on more tests. Let them know its debilitating and you can't cope with every day tasks. Cry if you need to. It shows them how awful you're feeling, because generally, adults don't cry in front of strangers. We put on a brave and happy face.

Do you have someone (like your Mum) to go with you? It can help with someone else pressuring the Dr to do something. Also, maybe ask to see a different doctor.

I'm sure you don't have lung cancer and you WILL get better. I hope it's very soon xx

Thank you for reassurance, I just feel hopeless.
I’ve tried taking my husband to a GP appointment but got told it is probably anxiety and nothing further they can do. Another GP told me it is probably long COVID and nothing they can do either. I have not been to GPs for years so hard to argue what else they can do as i have no idea what might be wrong with me. I also don’t have anaemia, had iron infusion earlier last year after having anaemia after having me DC and levels are all fine.

The problem is if i cry they tell me it is anxiety, if I try to say I feel bad and stay adamant that i need help they tell me it takes months to recover from a virus. I’m 40, fit and healthy normally, never get sick and now I am i don’t know where to turn. They treat me like I’m a pest for trying to talk to a GP, I’ve paid for an appointment with respiratory consultant and they gave me another antibiotic that didn’t really help.

I dread every day and can’t take care of my kids.

I agree with PP - anaemia can cause some of those symptoms.

A colleague had a nasty virus like that which took absolute ages to shift. She mentioned that she’d felt very hopeless and depressed towards the later stages because she felt she’d tried everything and it felt like it’d gone on forever. It eventually got better almost overnight after 10 weeks or so. I had checked in with her one Friday and she still felt awful, and then Monday she was back at work feeling a bit tired but loads better. She was so relieved. Similar age. Hope it clears up for you soon too.

Pneumonia perhaps ?

My friend felt you for months and it turned out to be pneumonia

She ended up needing strong IV antibiotics not just oral ones from the GP

@Pepperama that gives me hope, I’ve tried staying positive but the it has been so long
@KittenPause i had chest X-ray and nothing showed so got antibiotics for atypical pneumonia, felt a bit better but not for long. Maybe i need to go back to respiratory and argue for some further tests, I’m hopeless with medical stuff and feel like I’m making a fuss

Lung cancer would have been picked up by all the tests you have had, so put that out of your mind.

I always feel better for taking charge of my own health. Do some research on strong doses of vitamins for getting over infections. I would also concentrate on building up gut health, so fermented foods, lots of different fibre, nuts and seeds.

I know it seems counter intuitive but try to get out and walk every day, even if it’s just to the end of the road.

Take back control, and concentrate on getting well not being ill.

I am not suggesting you are suffering from anxiety, just that you need to put a different emphasis on your well being.

I felt like this. I just couldn't breathe. Never had it before and it came out of the blue. The throat closing was the worst feeling. I felt like I would collapse. I had the chest xrays etc. It was anxiety/panic attack. Why don't you try sertraline just to see if it changes anything? You can always come off it, but you must do so very slowly.

You have to advocate for yourself and never ever feel like you're making a fuss

Especially not now this has been going for a while and not been sorted out

The trouble is when we're ill we become weaker in our bodies and just tired with it so it's hard to be strong and vocal

Just imagine that you're not advocating for yourself but for a loved one and how much you want them to get better

My DD friend a teenager was sent home from hospital twice recently and told to take paracetamol and has since been in and out of hospital really ill as his condition escalated because they didn't check him over properly

Maybe you need different antibiotics, stronger prescription and for a longer period of time

Hopefully they'll figure it out this time when you see them

If you get desperate go private for a consultation and once they figure it out you then can go back to the NHS to get it sorted out if need be based on that information

Is your cough productive? If so, have they taken sputum sample to send to lab?

Op said she paid for a private respiratory appt

I had exactly this last year, it was awful. After multiple tests I was diagnosed with eosinophilic asthma by respiratory.

I also had very low ferritin.

I hope you get the answer soon.

Thank you all, i really appreciate all the advice, i feel less broken today.

I'm desperate to find what is causing it as every doctor treats me for something else. I got better after antibiotics for atypical pneumonia but 2 weeks later the coughing returned and is wet and productive again. Respiratory is just guessing and giving me lots of meds that make no real difference apart from antibiotics.

I don't even know what virus i had if any, cardiology tested my blood and all the virology came back negative for everything they could think of. 7 day tape came back with lots of huge spikes in my heart rate so they had proof it was happening all the time.

I think I need to put my big girls pants on and ask respiratory for chest CT and maybe a swab from throat as someone suggested. It is definitely not anxiety, I have the same pain the chest and shoulder and breathlessness as 8 weeks ago.

If it is long Covid they can't do much - if you are having spikes in your heart rate though, please ask them to check for POTS. It happens a lot after long Covid and they can give you some treatment for this.

It might be worth learning about pacing in the meantime - I know it may sound ridiculous but have you tried literally staying in bed for a week and doing nothing? I know us mothers often say we can't do that but if it is long Covid or even a post viral illness, the only thing that can help is rest and if you have young kids, you're probably not getting enough of it!

my.clevelandclinic.org/health/diseases/16560-postural-orthostatic-tachycardia-syndrome-pots

There are some treatments for this in the UK that can help

Often the pain can also be in the muscles etc from all the coughing

Have you been on holiday anywhere exotic by any chance making it some weird tropical disease ?

Pneumonia can last ages first some people unfortunately so you might just need to keep taking antibiotics first longer

If you were in the US you could probably get someone to your home to administer IV antibiotics

Maybe you need to be an inpatient for a couple of days but then tiu might just end up catching something else

Have they tested you for TB - that was quite prevalent a few years ago maybe 5 years ago so it's around

Will add TB test to my list. Thank you all for a handhold and advice, I desperately needed it.

Booked respiratory consultant for Tuesday and won't let them dismiss me, will request CT of lungs, swab of throat and TB test. I'm going private anyway so need to be in a fighting mode but was too ill so far to argue my case. Made me realise how bad it is to get sick nowadays and I cannot believe how many drugs I was made to trial so far.

I'd really recommend getting them to test for eosinophilic asthma as well. Whilst it's pretty depressing in terms of management, by starting a different medication, I've already seen a significant improvement.