to be scared I’ll have long Covid forever?

[CovidConfused123]

I’ve tried everything for the tiredness and the pain
I’m now having oxygen therapy that’s going to cost hundreds I don’t have as I’m now set to go onto no pay at work
It’s all such a mess
Anyone that’s come out the other side?
I’m 4 months into this and can’t see an end 1 I feel I’m getting worse not better

This sounds horrible. Can the NHS not fund oxygen therapy? I remember being really ill with something else and believing it would never go, but it did in about thirteen months (another post viral illness long before Covid.)

god, that's awful OP.

Sorry, I don't know anything helpful, but I hope someone else does.

Just to add, the best advice I had, from an old man who rescued me one of the many times I went out and became horribly ill, was, don't push yourself, accept this will take time. It's the hardest thing but as soon as I stopped trying to force myself to be normal I started to get better x

I'm sorry I'm nearly 2 years in and I dont think I will ever fully recover my health (in fact as I have kidney damage I almost certainly wont). I am however much better than I was, with most improvement coming at the 8 month plus mark. So you may see improvements yet. Not much is yet understood about what causes the issues that coming under the heading of long COVID and that makes them hard to treat but research is being done and that holds out hope for future treatments.

But yeah, its shit (particularly when the hundredth person tells you that of has always been a thing )

I’ve currently got diagnosed as having long covid and I only got covid at Christmas. So far I’ve been off work 6 weeks. My lungs are bad and I’m so tired all the time. I’ve had 2 lots of strong antibiotics and I’m currently expecting steroids.

Its been nearly 2 years for me (got sick March 2020) but i'd say I'm now 80% better. Hang in there. The first 8 months i felt terrible with no improvement at all.

I am now working full time again, exercising (just brisk walking) and have a fairly normal life. Lingering tinnitus, headaches and gastro issues but I can cope. Honestly I think it was mainly time and rest that got me better. Sending you best wishes OP, i know how hard it is. Especially as some people still don't seem to fully believe that long covid is a real and debilitating thing.

Thank you all
I’ve gone for weeks with literally doing nothing apart from sleeping. Other weeks making myself do an hours walk a day - I can’t say I’ve felt better or worse either way. I feel horrible all the time - so so tired like I’ve got terrible flu every single day topped with excruciating pain.
I’ve only just been accepted onto the long Covid clinic waiting list but that’s another 6 week wait.
I am so scared I’ll lose the job altogether.

That sounds awful, OP. As a chronic illness sufferer, I agree with previous advice- you really must take it easy. Your understandable anxiety to get better will make you feel worse, too.

Treat yourself like a baby- regular naps, regular quality food, regular fresh air.

Pacing is not have a rest after overdoing it, it's not overdoing it in the first place!

The strategy that helped me most was to think how much I could do, then do less. So if you think a 10 min gentle walk is manageable, so 5 minutes but do it every day. When you've done it every day for a week, add a minute on. 6 mins every day. And so on.

I've gone from practically sofa bound to properly active, following that strategy.

An hours walk is too much. Go for a 5-10 min walk & go much easier on yourself. I hope you see some measure of progress but let it take the time it takes. It will take longer if you push yourself 💐

Take hope OP. I know a few people who have had long Covid and they have all got better, slowly.

I really appreciate all the replies - this has been an incredibly isolating experience for me so I really am grateful.
I understand what people mean as in the hour is too long but I honestly have had weeks where I have only walked to the car to do the school run and I’ve still been in the same amount of pain and exhaustion as when I’ve forced myself on the walks.
I was worried a lack of vitamin D was contributing to the tiredness as that came up in blood tests along with low folic acid but I’ve been on supplements now for months with no change.
I guess it’s very hard accepting it’s very possible I’m going to lose my job and life is going to be very different for me.

How strong are the supplements you are taking?

They’re on prescription so I’m hoping strong enough!

Do you have a Nuffield hospital near you? They are doing some free long covid programmes that you can register for. I saw it advertised yesterday so might be worth a Google.

Hi, I have long covid and would happy to discuss everything I’ve tried and the successes I’ve had via DM. It’s too outing to reply in a thread. I’ve had it for 14 months, but have made some progress.

i would recommend checking what dose of vit D you are on and also getting blood test or fingerprick test to check vit D level is at top of range (if you use an NHS lab for a private fingerprick the test results correlate with blood test). However if you are on high dose on prescription GP should be requesting another blood test after 3 months to review dose.

Try the long covid facebook group. 40 odd k members. Also suzy bolt's yoga for LC facebook group, really helpful. Lots of us on these sites with different symptoms. For most it just takes time, rest, pacing yourself, estimate how long you can walk for then half it ! Some research has suggested anti histamines and a low histamine diet can work but not for everyone. Sadly there's no failsafe solution. I'm 80% recovered but still have symptoms, hopefully they will burn themselves out...

Justalitlebutfurther
I’ve PMd you - I hope that’s okay

I’ll look at that Facebook group - thanks so much!
My blood tests are booked for next week again so will see if any change in the levels
It’s just terrifying the thought of living like this for ever but also losing my job is going fo cause me even more stress
It’s odd as I now can literally feel a stressful event no matter how small taking a massive toll on my body and I’ve never experienced that before in my life

@CovidConfused123

Hope you don’t mind me returning to this thread but I wondered If you had any success with the oxygen therapy? I’m feeling desperate and looking at hiring an oxygen chamber at great expense.

I also felt like this and I do still have symptoms a year and a half later. However, I am now working nearly full time again a year later from having to take time off. I would say rest is the most important thing you can do. I was trying to walk in between resting and I had to stop and rest for several weeks before using pacing to build back up. I literally did things like make lunch to build up and then would have to rest for the rest of the day. But by gently adding in other tasks I eventually am in a position where I can do 85% of what I could if I am very careful and plan things. I was lucky and got onto a Nuffield health rehab program which was so helpful. Happy to PM if it’s helpful.

Whoops sorry I realised I had replied when this thread was first started 🙈that just goes to show the brain fog is still one of my symptoms!

How are you getting on OP?

I’m approaching 2 years. It does get better. But not until you really, really rest.

I’m at about 25% of my previous capacity. I’ve made a lot of lifestyle changes and have seen improvements.

I think everyone’s recipe for recovery is a bit different as the presentations vary…

From what you’ve said re STRESS - look up AUTONOMIC NERVOUS STSTEM DYSFUNCTION. It’s common post viral. Meditation helps with this.

Its a slog isn’t it.

Keep going OP. Things will get better.

friends have seen improvements with wim hof breathing method and water fasting. plus supplement with friendly bacteria

I've had long Covid for almost 10 months now. I was off work for 5 months then went back on a phased return over 2 months. Once I started back on full time hours under normal levels of stress (although I work in Financial Services in a high pressure role so 'normal' levels of stress are pretty high by most people's standards and hours can be long and the pressure is relentless), the cracks started showing. I have struggled most with cognitive issues and fatigue, and the fatigue makes the cognitive issues much worse.

It quickly got to the point where my brain fog meant I was making mistakes (although I usually caught these before anyone realised) and something which would be simple and quick pre-Covid became incredibly hard for me and I was very slow. I went from being a top-rated performer to (in my opinion) very average and I felt like I was hanging on by fingertips just to be average. All this triggered a relapse and I've now been off work for a month.

I've had zero support from the NHS (and I do mean ZERO) but with help from Occupational Health and a private GP (paid by my employer), I finally saw a cardiologist with a special interest in long Covid yesterday. I'm waiting for blood tests results, and I'm sitting with a blood pressure cuff on as I type this as part of extended blood pressure testing. I'm also booked in for autonomic function testing on Harley St next week. All of this will blow the ceiling on the coverage on my work health insurance but I hope I can get some help before the funding runs out. The specialist recommended taking 200mg of Co-Q10 3 times a day and said if that works for me, I'll see a difference quickly. I think he may well be right as today is the first day I've felt vaguely human. Desperately hoping this continues.

This is the first time I've felt like someone is taking me seriously. Until now, it has been felt like no-one understands and people just think I'm a whining malingerer. I'm usually a very driven, very active person and it feels like I've lost everything that is me since Covid.

@HundredMilesAnHour thank you for sharing your experience.

Your post stood out to me as my fatigue, cognitive issues and breathing problems seem to be exacerbated by working in my sedentary job. Like you, I'm considered to be a top-performer, capable of quickly getting to grips with any piece of work and delivering to a high standard. Now, in the very early stages of what's looking like long-Covid, I'm struggling with even simple tasks. I've joked with friends that someone has stolen my superpowers, but it's really scary when something I've always taken for granted is now so difficult.

I had a few days sick leave when I developed breathing problems and chest pain about 3 weeks ago but then returned to work when my breathing improved (was allowed to WFH). The concentration required to perform at a barely even acceptable level left me exhausted and I was having several naps during the working day and using flexi-time to shorten my days. I'm also finding that social interactions or just a chat on the phone tire me out. Even a short trip to the supermarket ended up with me unable to mentally deal with the checkout process.

I've been on sick leave again for a few days and have noticed an improvement in the fatigue, but that's with doing very little physically or mentally. My fit note covers 2 weeks but my manager has asked me to try to return next week with some reasonable adjustments. I don't think they fully appreciate just how difficult it is to function at even the lower standard. I'd already decided I should take the full 2 weeks but your post has convinced me that I shouldn't feel guilty and that returning too soon isn't going to help me.