COVID long haulers – how are you getting on?

It’ll be 2 years in April for me. Brain fog and fatigue still very much an issue, and still not quite back to full-time at work. I have only been to the office once since March 2020! Lucky to have that support – if I had a physical job I’d be in a right state.

I find I’m ok so long as I don’t do any breathless exercise – but then I feel crap very quickly, and can feel it in my lungs. On the plus side, I’ve now managed to get my average daily steps above 6,000. And at least I never lost my sense of taste.

Unfortunately, it seems that COVID might have, somehow, triggered Ankylosing Spondylitis, which I’m not best chuffed about. Waiting on some tests.

I know there are some fellow sufferers here – how are you doing? Need a rant? Ideas?

I’m not a long covid sufferer myself but I have enormous sympathy for all the people who have had their lives turned upside down by it.

I was shocked to learn how many people with mild covid have ended up with it :

https://news.sky.com/story/coronavirus-estimated-1-3-million-people-in-uk-suffering-from-long-covid-ons-figures-show-12510052

1 year for me now, still find exercise hard and often heavily fatigued. Work is a struggle but at least it’s not a physical job. Struggle to take in the last 10% of my lung capacity I’d say, as if it’s physically constrained, almost asthma like.

I don’t think there seems to be any treatment or cause identified so I’m just moving on as if it never happened, there isn’t much else to do for now.

I have had a bit of a shocker, seemingly i have Type 2 diabetes from Covid.

I have had my hba1c checked in the past a few times due to fatigue issues (below 40 is fine, 40-48 pre-diabetic and over 48 diabetic) and never been over 36. In the weeks after Covid i started having to get up and wee 3-4 times a night, if i stood up too quick i felt really dizzy, and had some issues with my eyesight. I put this down to virus and thought i would recover, but other symptoms abated, although taste and smell took 8-9 weeks, but these symptoms continued, so went to GP and was told that hba1c was 60 and that i was now diabetic and that they wanted to put me on medication straight away.

There seems to be a family history to getting T2 when ill, mum and uncle both got it when suffering cancer, and it seems virus causes a lot of inflammation and seems to attack a weakness you may have (daughter is T1 too).

I have refused medication for now, i want to see if i can control it purely by diet and exercise, and didn’t want the medication to mask whether diet and exercise were working, quickly lost a stone, and brought in a lot of easier exercise so walking/ cycling at low efforts every day, instead of riding at a higher effort 2-3 times a week.

To date, seems to be having desired effect and blood sugars are going down (weirdly went up by about 15-20% when i had booster too). So hopefully it is something i can control well, but it is not something that will go away.

Diabetes UK are now recognising that virus is causing T1 and T2:

https://www.diabetes.org.uk/about_us/news/new-worse-cases-coronavirus

Brain-foggy fatigue and sensory issues for me since April 2020. It’s put paid to my time as a school teacher but have learned to manage it reasonably well so I’m studying for a career change that will let me work more flexibly.

Exercise is broadly fine but I certainly don’t have the motivation to train for racing (which may also be due to 2 young kids).

Two years for me since I had it. My wife had a full set of symptoms. I just felt really tired for a couple of days and then my taste and smell disappeared. Zero respiratory symptoms and if it wasn’t for the taste/smell I wouldn’t have thought I’d had it.

Taste now functioning at about 80%, but smell around 40%. Still can’t smell anything at the fuel pumps or when cutting grass, and most things don’t smell at all like they used to.

Might be of interest to some – intermittent hypoxic exposure (IHE) for Covid rehab:

https://www.frontiersin.org/articles/10.3389/fphar.2021.643619/full

https://www.altitudecentre.com/research_post/the-beneficial-impact-of-hypoxia-in-covid-rehab/

I’m going to give it a go – my effects are lingering a little more than I like & I’d like to get on with my life!
Ps: I’ve no affiliation with The Altitude Centre.

Two years in April. Fatigue comes and goes. Smell has gone. Intermittent chest pains with lung damage ruled out by MRI. Inflammatory response at the slightest hint of any decent exercise – including cycling hard. No issues with walking though.

No eau du chien issues with the puppy, so some good news. Almost poisoned the family cooking off chicken and I can’t smell burning.

I have/had long covid from around March 2020 onwards and this time last year was still in a pretty bad place – brain fog, severe exercise intolerance (PEM), weird blocked-up ear stuff on the lefthand side, chest pain, tinnitus etc. I’d also had small nerve ‘changes’ (probably damage), breathing issues, some really unpleasant autonomic nervous system dysfunction with horrible postural-related adrenaline surges, tachycardia and stuff I’ve probably forgotten. I improved markedly after my second dose of AZ at the end of May. Started riding an e-bike around the same time and progressed onto a normal bike again and my exercise tolerance has improved to the point where I did the Rapha Festive 500 and finished with a 150k ride.

All of which is good and I’m massively better than I was and I’m amazed at how quickly I’ve regained fitness. The vaccine thing may or may not have been coincidence, I don’t know, but some others have had similar experiences, so who knows. I still struggle recovering from hard efforts over threshold and my head still isn’t working properly and I have tinnitus in my left ear, which is annoying, but fading slowly. I’m hoping in time it’ll go completely, but I’d like to get a proper MRI of my head at some point.

I’ve been incredibly fortunate in the support I’ve had from my partner and my friends and intermittently from my GP. It’s been a learning experience, the first time I’ve ever had anything seriously wrong in health terms, ever. I’m still very much not ‘right’ and my body reacts weirdly to stress and vaccines too, but I’m getting there albeit slowly.

One thing that may not be apparent from the outside is just how little medical science currently knows about long covid. There’s a constant stream of speculative papers and articles, but no certainty and no universal effective treatments. Some GPs are decent, others are unsympathetic and put it down to ‘anxiety’ or similar. My experience of one of the vaunted long covid clinics was incredibly disappointing and came down to a doctor asking me a few questions and listening to my breathing wth a stethoscope then discharging me.

It’s also frustrating that long covid is barely mentioned as a covid outcome at a point where infection is rampant. It may be that omicron is less likely to trigger long covid, but it’s a hell of a gamble that could potentially leave hundreds of thousands of people in a really horrible place. I really hope that it doesn’t.

Anyway, I guess I’m lucky to be quite a long way down the road to recovery, but I’ve lost almost two years of my life to this thing and Boris Johnson’s incompetence in not reacting decisively to covid back in March 2020. I will never forgive him or the idiots who enable his government.

Covid in July-August 2021; Sense of taste at about 50% and sense of smell about 10%. My sense of smell was getting better then it just reversed. I can’t smell a thing unless I push it up my nostrils.

Odd bouts of fatigue, forgetfulness and brain fog. Difficulty in concentration and if I sit still for 10 minutes with nothing to do I get overwhelming urge to sleep.

I had a really weird balance problem that was eventually traced to my nostrils and sinuses being swollen to the point that my ears couldn’t balance. This also coincided with my sense of smell worsening. It’s all shite but I still feel fairly lucky in comparison to what some people and families have suffered.

I got what I am sure was covid at the start of 2020 before testing was available, then a month later developed Rheumatoid Arthritis. In my mind those two things are linked but there is no definitive proof that they are.

It’s been a long old slog since then, the meds can be worse than the actual condition and currently I’m in a bad state with a few of my joints out of action blocking me from any real exercise but when I do the right stuff with meds, food, rest etc and the weather is good life gets back to pretty much normal

Glad to hear you’re back on the bike, BWD!

I got what I am sure was covid at the start of 2020 before testing was available, then a month later developed Rheumatoid Arthritis. In my mind those two things are linked but there is no definitive proof that they are.

This is a bit like me. The current thesis (waiting on some appointments to confirm) is that COVID (I too couldn’t get a test at the time) may have triggered a rheumatological condition in me, probably Ankylosing Spondylitis.

It’s mental that it’s causing other conditions like this – like the poster above who now has diabetes. My neighbour had long COVID for 18 months and now has myocarditis, which he’ll probably take meds for long term. Terrifying.

It’s made me a lot more anxious about going out – what if I get it again? What if that makes it worse?

I’ve also noticed some odd, more minor side-effects, like feeling very weak and ill if I go too long between meals. My alcohol tolerance is still pretty low too – although the resulting reduction in my booze intake might be a good thing I guess!

Read the Cambridge article. Then the NCBI.

Then get some good quality vitamin B12 and D ,(consider adding some folate too).

https://www.cambridgeindependent.co.uk/news/long-covid-patient-in-cambridge-tells-how-simple-treatment-t-9203620/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7428453/

Alternatively don’t be seduced by quackery

Immotverygood

If that’s aimed at me you have no idea what you’re talking about.

If you Google (and pick whichever source you want) for b12 deficiency and chronic fatigue, then do the same for vitamin d . You can spend the rest of your days reading medical peer reviewed articles.

So to continue on the path of “why does Covid impact some people worse”. Well, you might want to consider if you’re already “at risk” if you have a MTHFR polymorphism (inherited from your parents, single or double copy).

If any of you guys have done an Ancestry DNA test (or 23andme) and still have your DNA raw data – you can plug that into various DNA checkers to see if you have the “mutations” (single or double mutations). If you do, then you’re worse at using folate, increased homocysteine levels (bad stuff if your body can’t use it).

Roughly 30-40% of Europeans have a single MTHFR gene mutation – which is likley to make you more susceptible to Long Covid (and other viral fatigue). If you have two, you’re even worse. If you can’t use the folate, and folate is important in red blood cell formation and for healthy cell growth and function.

Not heard of the AS thing before but my god it fits so many of my symptoms post covid. I’ve had lots of trouble with my lower back including an MRI in December for it which showed trouble with the base of the spine but had no follow up with the doctor after that, and I still get trouble taking a full breath in because the chest feels restricted at about 90 percent. The bowel and bladder dysfunction are ever present at the minute with frequent urination as well.

I think I ought to follow it up with the doctor.

https://www.sciencedirect.com/science/article/pii/S030698772100061X

“If confirmed, treatment should address restoration of methyl-group supply, reasonably tailored to an individual’s specific requirements. Replacement of vitamin B12 and folate in combination with glutathione or a precursor, and possibly serine, would likely form the mainstay of therapy. Interestingly, a recent study of ten European countries showed that suboptimal B12 consumption correlates with increased COVID-19 incidence and mortality [60].”

Attention should also be given to general diet, including daily methionine intake. Avoidance of other nutrient deficiencies and effective nutrition policies may help strengthen population resilience to COVID-19 itself [61], [62]. For example, 17 patients hospitalized for COVID-19 who received daily vitamin D (1,000 IU) magnesium (150 mg) and vitamin B12 (500mcg) had a significantly improved clinical course compared to 26 non-supplemented patients [63].”

Don’t get sidetracked by the antivaxx brigade shouting about Vitamin D as the saviour, it’s still a hugely important vitamin.

I think I ought to follow it up with the doctor.

Do – but it can be slow! My first phonecall with the GP complaining of back pain was 13 months ago, and I’m still waiting for appointments with the Rheumatology clinic to become available, so it’ll be some more months yet.

The good news is that along the way, I’ve seen physios and an osteopath, and am now seeing another osteopath privately. They all gave me various exercises and stretches to do, which have really helped with the back pain (for a long while I would wake up in pain after 3 or 4 hours in bed; now I can pretty much get through the whole night).

Also, see if you can get referred to your local Long Covid clinic. I’ve found them far easier to contact than a GP, and they referred me directly to the physio at my local practise, which if I had gone via the usual channels, would have taken absolutely forever.

6 weeks on from my first positive test. My sense of taste and smell is still 50% of what it was. The fatigue though is the real killer. I’m tired all the time, which is never something I’ve ever struggled with. I’m struggling to wake up every morning whereas before I was always up at 7am and straight out of bed. A few days over xmas I slept until lunchtime which is absolutely unheard of. Even mild exercise has me floored. When I walk the dog for an hour, I need a sleep after. I can manage an hour on zwift in zone 1 or 2. Tried a 45 minute zwift training session a few days ago and had to bail after 30 minutes. I’m trying to do a 30 minute session on zwift every second day to try and bring the fitness back. I reckon it’ll be a few months before I can get on the bike properly.

Fatigue is what’s getting me currently. Taste & smell are ok. Brain fog so so..

Non confirmed in Feb 2020 as no testing available but all the symptoms. Still can only smell an ashtray ! Several random complaints – chest pains, ear problem in r ear and outbreaks of crushing fatigue. Compared to others relatively OK !

blood sugars are going down (weirdly went up by about 15-20% when i had booster too)

My glycaemic control goes 7its up when I have a flu jab but didn’t budge after the covid medication.

I’m roughly where BadlyWiredDog is. March 2020. Post Exertional Malaise whacks me fairly regularly. Booster Pfizer knocked me back for 6 weeks. Have earache in my right ear when i start relapsing. I’ve spent a lot of time looking at stress triggers.

Currently on a plethora of supplements my nutritionist friend has recommended and considering CAWS as a method of getting over th PEM.

Thoroughly fed up with the whole thing and beginning to get my head around the idea that this might be me now long term.

But still better than very many others, and quite frankly it’s made me significantly improve my lifestyle.

Mate of mine got it Oct20. Still on oxygen therapy and hardly leaves the house. Terrible.

Currently on a plethora of supplements my nutritionist friend has recommended and considering CAWS as a method of getting over th PEM.

I did a month with a CAWS coach before the first AZ jab stopped play. I found it really useful in that it forced me to monitor what I was doing more closely using a spreadsheet that traffic light colour-graded each day and helped me spot patterns. It’s also quite positive having an external take on where you are and what you’re doing and a programme of some sort to follow. It’s quite easy to lose your bearings with this thing.

What the CAWS stuff does roughly, is base your efforts on simple initial ramp test with a HR ceiling then aim to build it up gradually without triggering PEM. The idea, which I buy into, is that the body heals better when it’s moving, but you don’t want to go off the PEM cliff. Might be worth a try. Shout if there’s owt else I can tell you about it.

I got covid in November 2020. Over a year on I do feel vastly better (took 11-12 months) but still have days feeling incredibly tired and breathing a little tight, and occasional pain in the side of my lung. Main symptoms after 8 weeks were a 5 month daily headache which only resolved after 3 months of drugs, breathing issues (both mechanical and oxygen exchange) and fatigue. Went back to work FT after 4 months but had to be very careful. Exercise got better v slowly built up with the guidance of a PT. Found the long covid team useful to chat too but I was generally doing everything they suggested – basically pacing and planning for managing fatigue. I fully agree with the point about about moving but avoiding the PEM cliff.

I do have some genetic health issues which point to mast cell type response might have been part of my issues. I took antihistamine for about 3 months which I am pretty sure helped. My vitamin D levels have been low throughout so now taking supplements everyday (including summer). I never lost my sense of taste but I now can’t stand alcoholic beer. At most I drink a glass of wine once a week having not drunk for about 8 months after covid. Otherwise I fit the very typical profile of long covid sufferer who had mild covid – a fit and healthy woman in their 30s.

My main problem is I’m now terrified of catching it again! It’s a really brain f***.

Wishing you all the very best and good luck for recoveries.

I had posted a longer reply here but it got lost somewhere after the submit button. How are people getting on with their “sequelae”? I am thoroughly fed up with mine, and the ongoing Covid epidemic feels like a slow death sentence.

Energy levels and fitness doing well. No sense of smell whatsoever. Recovery from any mild illness is still protracted. I am hoping that the Heart Rate bumps in a recent track race are artifacts and will test another HR monitor tomorrow!

I’m pretty good now. I still have mild tinnitus in my left ear, but in terms of fatigue and being able to ride a bike, run etc, I’m decent. My top-end power and repeatability of harder efforts aren’t as good as they were and frustratingly, if I do target that area with specific interval sessions, I don’t respond as well as I’d expect to historically. Then again I’m older too.  I shall keep on trying.

I think I’m generally less resilient than I was before and don’t bounce back from minor bugs etc as quickly, but the autonomic stuff, odd chest pains and cognitive issues have all cleared up. 

Interestingly, my brother, who I don’t speak to often, also has long covid with similar symptoms to mine. That may, of course, simply be coincidence, but might point to some sort of genetic weakness I guess. 

Been a long hauler since end September ’22. I’m still really struggling with mental plus physical fatigue; concentration; stamina; poor sleep (sleeping tablets usually enable me to sleep through without waking several times, but leave me really groggy through most of the next day); anxiety; chronic tinnitus. Took ill health retirement from work a few months back after long term sick leave, to try and concentrate on improving my health, still in no fit state to hold down a job and no idea what I’ll apply for.

Thankfully NHS supported my better half’s two year absence from her role due to long covid much better, as well as when she has had the odd few days off since returning last summer, when she has had spells of fatigue going off the scale.

Work colleague is still on the long road to recovery – fatigue seems to be the issue. Must be getting on two years for him, possibly three. He’s mainly WFH as a day in the office, plus travel, wipes him out completely.

Had it in September 2021.

No physical or mental issues that I’m aware of. Sense of smell is shot to shit. My brain has a habit of filling in any gaps with the whiff of burning plastic.

For me it’s currently crushing fatigue and trying to feel out energy headroom again after Covid #3 in November. Lurking autonomic nervous system issues, with occasional inappropriate fight-or-flight responses that I manage with breathing/meditation. Tinnitus and mental malaise (dizziness, unclear thinking, brain fog) that comes on when tired or after mental “heavy lifting” (especially abstract or spatial thought, which has made software engineering frustratingly impossible). I had managed exercise back up to reasonable levels after Covid #2 in January last year, running or cycling at a reasonable pace for up to an hour without abberrant heart rate spikes or excessive PEM or fatigue issues, but #3 has wiped out that progress again and I feel like I’m really struggling to avoid triggering fatigue crashes at the moment, though the stream of winter illnesses the kids bring home really don’t help.

I’d desperately like to get back to working again, even if it’s just building something under my own steam or getting some small open source software contributions under my belt, but it just feels so far off again right now. I’ve shrunk my life back so far to keep within my energy allowances that it feels like there’s almost nothing left: my activity is ferrying kids about by bicycle riding at their pace; my socialising is snippets of chat with parents of their friends; my professional output is nothing at this stage; I tinker with household projects but don’t know when I’ll be able to get anything bigger done. I’m hoping things improve enough again in coming months to get back to some social bike riding again. Grumble grumble grumble.

The looking at heart rate bumps with suspicion is very familiar @TiRed. The ones I’ve seen have thankfully been sufficiently repetitive to believe they were algorithmic, and others fixed by replacing a chest strap battery. The first time I had Covid my first abortive return to running yielded an eye-opening max HR at a medium perceived effort level and an abandoned session, but I have been more wary since and haven’t seen anything like that again.

I was an early adopter of Covid, locally one of the very first hospital patients when it all kicked off. I had a couple of weeks in hospital and it all got quite grim. But I bounced back super quickly with apparently no side affects. But my GP wife alerted me recently to my really high respiratory rate when resting. Currently away in the Alps and noticed impact of higher altitude. I’m off for a chest cray next week to see if my lungs have been damaged. 

I’ll be up to 4 years in April. Still fatigue and brain fog are the main culprits.  I now do half a day per week in the office, assisted by an ebike. And I did indeed get diagnosed with Ankylosing Spondylitis,which has had a significant impact too.  It’s hard to know how much of the fatigue is attributable to that, rather than LC?

Here’s my step count since Jan 2020 – I’ve been using steps as a sort of proxy for overall health levels.  You can see the initial crash from a base of around 10k. The later dip from about 7k to 5k was deliberate – I realised I was basically just doing steps for the sake of it, and it was wearing me out, so I decided to ease off. I got COVID for the 2nd time a year ago, and I’ve struggled to get back to 2022 levels – the last 12 months were pretty rough. I’m making progress again now. But my god it’s frustrating.

For the long hauliers, was it a sudden onset, or gradual? Also with the loss of smell, is is it all smells, or just some?

for me, it was pretty sudden. I had been ill with COVID, and self-isolating.  I was keen to get back to normal, and had a few of those days where I was like, ‘that’s the headcold and sore throat done, a couple more days and I should be right as rain’.

Then about 12 days in, I decided I would act as though I was fully recovered, because that’s what I wanted to be.  I was hoovering the house, working reasonably hard trying to get a load of cat hair off this one rug, and suddenly felt a bit ropey… no, very ropey… nope, I’m going to have to lie down here.  Urgently, in fact, before I fall down. Dropped the hoover on the floor, collapsed onto the sofa and stayed there for the rest of the day. And even now, 4 years later, I still feel like the tail end of a flu, when the worst symptoms are past and you just haven’t got your energy back yet.  Still waiting!

For me it was more gradual than that. I knew I wasn’t over it, and it just took an age to get over it. The second time around it wasn’t obvious at first, then I’d pushed through trying to do well in a new job and just blew to pieces. That time was worse than the first one. Third time around I know what I’m looking for in terms of recovery or not, and I feel like I’ve been bouncing from fatigue crisis to fatigue crisis despite doing my utmost to do as little as possible.

For me the loss of smell definitely wasn’t all smells. It was at first; but in time some smells definitely came back stronger than others. Child #2 was still in nappies and for ages I couldn’t smell excrement which was arguably pretty good. Unfortunately I also couldn’t smell coffee, and it tasted like dirt for quite a while. I suspect beer and wine probably aren’t what they used to be, but it doesn’t feel important as I feel like the slightest hangover might possibly never go away nowadays.

Coffee is the big thing I’ve noticed, I can smell other things but not coffee.