To think GPs are treating Covid patients like a bad 60s sitcom

[Isaidnomorecrisps]

Thousands of us have what the papers call “long-tail Covid”. I’m on two online sites and it’s generally people our age, often really fit to start with but who’ve been hit hard with the virus and maybe secondary infections - they’re saying possibly 5-10% - and generally didn’t end up in hospital.

It lingers and comes back again, every couple of weeks for me. It’s scary - you start over again.

AIBU to have hoped the NHS would have come up with guidance on this? GPs, with no basis anyone can work out, are (this is the 60s bit) handing out anti-depressants like sweets to us, calling it anxiety and ignoring our descriptions. What on earth is this about and why isn’t it negligence?

We need support, and research into what’s happening - there’ll be many thousands more soon. (For what it’s worth, around the three month mark lots of us started getting better, but till then it was basically stay in bed and hope for a decent employer.....)

Some one asked have we been tested. The answer is no as I was ill in March. This is part of my issue. How do I know it is Covid? Diagnosed over the phone but up until now week 13 have had no tests. Finally had blood tests last week and waiting for an xray. I am 40s and was super fit before and can now not walk upstairs without shortness of breath. For the doctor to wait 3 months to give me any tests is wrong.

I’m sorry you’re feeling fobbed off. I’m a GP. In all honesty, I’m not really sure there is much that can be done, other than telephone support? Inhalers and anti inflammatories? Where is the evidence for this? Long term anti inflammatories aren’t good and can have significant side effects, perhaps a trial of salbutamol but we shouldn’t prescribe steroid inhalers to people without a proven indication eg asthma/copd as it can increase the risk of pneumonia, which if you’ve had covid you may already be at higher risk of anyway.

Physios are mainly doing telephone appts. Respiratory routine services are on hold so no one to refer you to.....

I mean there is literally not much we could offer. I know it’s shit and they shouldn’t fob you off as anxious - but we are also between a rock and a hard place. People on here always assume GPS just can’t be bothered but it’s not that simple.

@Kitcat122 but antibody testing hasn’t been widely available until recently (and still isn’t in my area despite what the government say). It’s also not as reliable as we are being led to believe. Swab testing would have been negative after that time. That’s not the Drs fault 🤷‍♀️

I have ME. It used to be called “post viral syndrome”. I was physically normal until I had glandular fever and once I “recovered” I found my energy levels massively reduced and that if I did too much I’d get strange and debilitating symptoms. Until the 90s it was mostly thought to be in your head and something you should push through. It’s now an acknowledged and diagnosed medical condition which, at its worst, leaves sufferers bedbound for years. I’m having a flare up so cannot currently work (I normally have a close to 6figure salary job). I can barely summon the energy to make a cuppa. I have headaches, dragging fatigue, joint and muscular pains, the loss of sensation in some limbs, flu like symptoms, trouble with my cognitive function. Bright lights hurt my eyes, Noise is unpleasant. I can’t watch TV or read.

Treat yourselves kindly post Covid. If you are tired REST. Eat well. The GP cant cure this but in my experience trying to carry on as normal could leave you with a lifelong disability.

It's true that there is probably no treatment but they could have the decency to listen, answer questions honestly, and collect reports from patients.

Sorry you are struggling, OP. It's not pleasant to be dismissed by medical professionals.

One problem is that for some weird reason no one understands the government seem to have tried to cut GPs and primary care out of dealing with covid. It's been like that right from the beginning .

I think this long tail effect is common in many virus cases.
Last year my husband had a cough for 6 months - post virus nasal drip apparently.
God it lasted and lasted

Home42 I found being extremely careful of sugar and refined carbs really helped with my fatigue ♥️

Got it on 13 March. Burning lungs this morning. Was ill for ages, made a fullish recovery eventually. Now ill again. I think it's a secondary infection due to my lungs being damaged.

Perhaps some people are more susceptible to viruses than others. Some have a weak immune system, not enough to kill or require hospital treatment but a gradual drip drip of symptoms going on. Some people seem to have colds that linger around for longer than most people.

Have any of you with this had a positive test and then retested weeks later to see if positive? Antibody test to confirm? Or it could be something completely different?

twitter.com/AllysonPollock/status/1271830873386749955

Who are people "our age", OP?
When did you get your covid+ test?

DH had pneumonia. He was ill for maybe 2 months & still not right again for another 2 months. That was in 2001 when he had HIb & was a very fit 20-something. Severe illness does take a while to recover from, true. Docs didn't do much for him, either.

@Ohdearfindingthisboringnow

Perhaps some people are more susceptible to viruses than others. Some have a weak immune system, not enough to kill or require hospital treatment but a gradual drip drip of symptoms going on. Some people seem to have colds that linger around for longer than most people.

Have any of you with this had a positive test and then retested weeks later to see if positive? Antibody test to confirm? Or it could be something completely different?

I've wondered about this. It could be an immune thing. I have an autoimmune condition that makes my immune exuberant - in other words it's overactive, and usually I shrug off viruses pretty quickly. With this one, my symptoms were very, very mild, certainly I was far less ill than most other people who have mild cases. I had one day in bed and even then I could read and watch television. I'm wondering if it could be that because it's something new, my immune system isn't sure what to do with it so is stuck in a loop of trying to get rid of something that has already gone. My GP said there is a school of thought that it might be neurological - and a lot of my symptoms do fit into that category.

I haven't had an antibody test, but the person I probably caught it from has.

YANBU.

I'm a GP. What exactly would you like me to do? The services that I'd like to refer you to are often unavailable or have long waiting lists. There is no treatment available. All I have to give is sympathy.

i am not sure what you mean by people our age
we arent all the same age
i am asthmatic. ex smoker. now a vaper.
i have had shortness of breath since this started, sometimes worse than others, not sure if i have a temperature or having hot flushes. off work a week with diarrhoea, but other than that have continued to work, i dont know what else to do

oh and negative antibody test.

This was my experience too although thankfully was ‘only’ 8 weeks. An older (but not old) relative is on month 3.
At the time I had it they were only admitting people for below 89 oxygen stats. Mine were hovering just above that. I was exhausted all the time. I couldn’t breath and had blueish lips. My heart was racing continuously. The not being able to breath came back whenever I did even small amounts of normal activity. I was diagnosed with pneumonia and given multiple courses of antibiotics. At no time did I ever see in person a doctor. It’s very frightening. I do think the general public seems not to have understood what ‘moderate’ looks like.

I'm a long-tailer, too. My GP has been supportive but there is a feeling that their hands are somewhat tied at the moment. They've given me two lots of antibiotics to cover all the bases and told me to call in any time to chat about how I was feeling. I do think they could be doing more, i.e. calling us weekly to check in, planning future referrals.

They did tell me they were being inundated with similar calls, so they are very aware there is more to this.

Ok Im going to be blunt here.
Im sorry but I think you all need to wake to the reality of the NHS
"they could at least try to offer some treatment to ease the breathing so I can walk and talk again.physio or rehab for lung issues once things are back up and running."
There is no such service, pre covid19 on my ward (paediatrics) the "respiratory physio" only see's very sick high dependency children usually on assisted breathing machines with say a pneumonia once a day for 20 mins max maybe twice a day if they're very lucky, they rarely if ever see children with say severe acute exacerbation of asthma because there is nothing they can add to the treatment or a child with a pneumonia who is unwell but able to cough etc for themselves unless they are deteriorating and likely to require some sort of assistance with their breathing in the hope of reverting this. They occasionally teach breathing exercises to our major surgical patients this will be one 10 mins consultation and being shown how a devise to encourage deep breathing and then the child/parent is left to get on with it. . Rehab physio is even worse in a non specialised hospital following a significant head injury you'll be lucky to see a "rehab physio" for more than 15 mins a day. Physios resources like everything else has been parred down to nothing over the last 10 years. In the community its even worse chronically sick children often requiring assistance wiht their breathing including home ventilation see a physio once a month (if they're lucky).
The most you're ever likely to get from a physio is a quick chat over the phone and leaflet with exercises (you could probably find these for yourself on line).
I'm not saying this is right but this is the plain truth you are well enough not to require hospital admission therefore you do not meet the criteria for input from an already hugely overstretched physio service.
"e.g. Physios can help with breathing, walking and movement, pain Inhalers and anti inflammatories? Where is the evidence for this?"
^ This medicine is an evidence based profession doctors can't just prescribe inhalers for example without evidence that they may help. I know it's crap that you feel that they are not supporting you but reaching for a prescription pad to prescribe an inhaler is unlikely to be the solution.

How do you know there isn't a proportion of this 'long-tail' cohort that doesn't get some benefit from the treatment you've dismissed, OP? Just because it hasn't worked for all patients, it doesn't mean it shouldn't be offered where there appears to be a possibility it would help some.

Often/usually, there is a sequence to diagnosis and treatments before either recovery (due to treatment or spontaneous/naturally), referral to specialists or forming part of a group for whom there might currently be no effective treatments.

I'd be unhappy if I were a patient for whom anti-depressants (or other medication) would work and my GP wouldn't offer them because they couldn't be guaranteed to work for everyone.

Also, many patients presenting with these symptoms at the moment won't have had COVID. The apparent incidence of COVID remains c10% and the other 90% have required treatment for similar symptoms with non-COVID causes this year as in previous years as PPs with ME/CFE have said. I hope you continue your recovery, OP.

It's a form of viral fatigue, of which anxiety can be a symptom. It's a cluster of symptoms seen in people who are recovering from a virus. Doesn't affect everyone but can affect some people for up to a year afterwards. It can cause a number of different symptoms but generally fatigue, depression, exhaustion, anxiety and recurrence of the virus symptoms in waves. There's no cure. Some doctors treat the symptoms as they arise (hence the antidepressants) but that is all they can do. And all you can do is rest,eat well and get some fresh air. Which yes, sound shitty, but it is true. It isn't just covid related, it can occur with any virus. Usually has some liver function issues involved.

🤦‍♀️ To the PP wanting a weekly phone call to check in. Sorry but we do not have the capacity to be a hand holding service. You realise we don’t even do this weekly with people on end of life care? Eg actually dying. We try to be responsive as we can and if there is something we can actually do, or there is something specific you want to discuss or clarify, by all means I’d be happy to chat on the phone. But I think realigning you’re expectations may be required!

I do think the general public seems not to have understood what ‘moderate’ looks like.

I think this is very true.

You can be hospitalised with 'moderate' symptoms.

Moderate is anything up to needing supplementary oxygen. And COVID patients are given supplementary oxygen, generally, at a later point than with most other things.

My advise as someone with several long standing illnesses is that you will need to do your own research. There is a lot of suggestions that vit c and magnesium can help those trying to recover from covid , as well as supplements like quercetin, which is a mast cell stabilizer . I'm not a dr but I would definitely suggest your own research.
Sadly many drs just want you fixed and gone. They get fed up and disinterested with an issue that wont go away , usually resulting in the diagnosis of "anxiety" especially in women.