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.....)

But what can your GP do to help?
You’re not I’ll enough to need oxygen. There’s no cure (yet). All they can do is give you is advice (fluids/rest/paracetamol).

If they’re any good, they’ll rule out other causes. One of those may well appear as you being highly anxious and/or depressed, then they will try and help with that.

I understand your frustration, I also experienced this. Have felt better for last few days and dread that the symptoms will come back again (also have had this for around 3 months). Unfortunately this is so new to everyone and it will take time for the full effects of this disease to be understood. This is why it is so important to help with research - if you haven’t already download the COVID-19 app that is being used by king’s college researchers to try and understand exactly this problem. The more people that provide information whether affected by virus or not will help researchers understand the full impact this virus has on our health.
covid.joinzoe.com/

Unfortunately there are around a dozen Lungs threads on here and the current Covid 8 plus plus thread for us 'long tailers'and we are all saying the same as you. We were fed the lie of either hospital or two week recovery at most. Boris Johnson got the best care available- the rest of us have basically been dismissed and told the only medical care we will get is at A and E. It's been a disgrace. At the very least, post Covid hubs should be set up with respiratory and neurological specialists and physio's to offer help and support.

To add, I'm on week 11, signed off work, in a lot of pain and discomfort and begging every week to be referred to a specialist as I can no longer breathe properly. I was completely healthy the day before I became symptomatic. Even if the medics don't understand this disease, they could at least try to offer some treatment to ease the breathing so I can walk and talk again. A lot of people are being fobbed off with anxiety meds as that can cause 'shortness of breath'! It's truly a nightmare for people like us. I'm just glad that some newspapers are starting to report our plight.

Thank you both - yes, have been filling in the app, and also on a brilliant Slack site with around 4,000 other people - the point is that our stories are the same - GPs seem to be weirdly playing god with many of us, telling us we’re imagining it (a locum at my practice pretty much put the phone down on me and I’ve only used the NHS majorly to have kids - and was only the second time I’d called in a month.)
I understand it’s new, but please hear what we’re saying - a fever, that feeling in your chest, and aching every two weeks really isn’t anxiety x
Ps I’m hoping you’re okay too @Doorknob2 🙂

Sorry l don't understand your issue- you are having peaks and troughs of covid like symptoms but have never required hospital? Have you had episodes of being unable to breathe?

I’m on day 86. It’s a lot of suffering to go through with no help.

It would be good if all GPs were educated about the existence of long-tail covid. It is unfortunately very common (more than one in ten cases). IMO GPs need a protocol to follow (e.g. a standard set of investigations to order for common problems such as heart issues) and the ability to refer us to outpatient rehab programmes.

@TitianaTitsling your comment illustrates the problem. There is a perception (amongst some medical staff too) that covid is either a minor 2-week illness or you have trouble breathing and need hospitalisation. In reality, many people have a moderate illness that lasts many months.

Have you any underlying conditions at all? Also what about your family members? Are they going through similar issues?

Have you been tested?

You definitely have covid?

Never heard of this before. Sounds worrying because it sounds like you could be a super spreader.

What exactly can they do though?

Lots of physio/ot services have been shut due to covid and will have a massive backlog. Also not sure what a physio can really do for you.

The anxiety meds is a crap solution. I'm just not sure what else your GP will do.

Hi OP, it's a relief to see others going through the same thing, it has been maddening think we are getting better to be hit with symptoms again.

If you see the xrays of lungs it destroys the lung lining. No one knows if it's permanent yet, or if it's just something that can heal over time. Currently there isn't a lot you can do except wait and hope.
I don't think it's so much the GPS not believing you as much as there isn't anything else they can currently do.

But if there's nothing to be done what can they do? I don't get the 'bad 60's sitcom' analogy.

There are things to be done. Tests can be ordered to investigate damaged heart, lungs etc. Anti-inflammatories and inhalers can be prescribed. Outpatient physio referrals can help with breathing issues and safe reconditioning.

The responses on here demonstrate the real issue, which is that people believe it's a respiratory virus that mainly affects the lungs. It is actually multi systemic, affecting the blood vessels and the brain. The ongoing symptoms are not just a cough - many people never have a cough- or even to do with the lungs. They include gastric problems, heart issues (tachycardia is common), dizziness, strange sensations, arthritic joints, weakness, insane fatigue, nausea, crippling headaches, tinnitus, eye problems that can affect the vision, air hunger... the list goes on. It is a truly frightening experience that feels like it is never going away, I have had three weeks of feeling better to relapse again at eight weeks. I now have to consider that it is a chronic illness that has better days and worse days and work around that. The current statistics show 1 in 10 will be affected by the long tail but a study in Holland followed a group that showed 90% weren't back to pre virus fitness after three months.

But if there's nothing to be done what can they do? I don't get the 'bad 60's sitcom' analogy

One thing they could do is not label it anxiety. Just at least be honest and say we don't know enough about it to cure it but hopefully future research will help. It seems like conditions doctors can't actually cure, like CFS or menopausal symptoms, is so often put down to neuroticism. Maybe say we can put you down for some kind of physio or rehab for lung issues once things are back up and running.

What's the point in the tests though? If it's known that in 3 months you'll probably be mostly better then surely it's a waste of time.

Fair enough with anti inflamatories and inhalers, but is enough known about how they interact with the virus?

Feeling fobbed off by a GP is a shit situation. However there needs to be some level of realism about what they can do. The NHS doesn't have a magic cure for everything unfortunately.

@Hercwasonaroll

What exactly can they do though?

Lots of physio/ot services have been shut due to covid and will have a massive backlog. Also not sure what a physio can really do for you.

The anxiety meds is a crap solution. I'm just not sure what else your GP will do.

That's because the physios have been deployed to hospitals to help with Covid patients. They're still working, just not in outpatient services.

Long-tail Covid patients who are not in hospital are really getting the shitty end of the stick.

Physios can help with breathing, walking and movement, pain and anxiety. They don't just encourage people to shuffle around.

Anxiety meds might be useful but GPs are doling out anti-depressants especially SSRIs at the moment. I've just been offered them for psoriatic arthritis, for goodness sake. No thanks

OMG I had no idea that the 'long tail' was this bad! I hadn't heard anyone mention it in weeks. Occasionally someone will mention still not being fully recovered, but I didn't picture anything like this.

I don't understand why it's not being spoken about by more people?!

More research & more information to GP's.

I get they can't cure it (yet) but they can help with the symptoms & possibly something to prevent further damage.

Bloody hell

Take care of yourselves & I hop things improve for you all soon x

I sympathise. It's almost certain I had Covid 19 back in February - very likely, it was circulating at work. Both I and a colleague have been left with ongoing symptoms. I was lucky that my case was very mild, and because at the time the symptoms were supposed to be breathlessness and a high fever I didn't think I had it. I now realise that gastro symptoms, Covid toes, and weird changes to my sense of smell and taste were symptoms. Luckily, although not super-ill, I was ill enough that I stayed off during the time I would have been infectious.

Anyhoo. I've had the cycling between feeling better and then relapsing a few days later for months, but on the upside, the periods of feeling well are getting longer and the periods of feeling ill are getting shorter. I've felt well for six days out of the last seven so I'm hoping it's finally coming to an end.

If it's known that in 3 months you'll probably be mostly better then surely it's a waste of time

I’ve had it for 3 months and am very far from better. We currently don’t know if we will ever get better as the illness is too new. There are many people like me. It’s not “a waste of time” to help us.

Thank you for sharing your story and the symptoms and on going issues that you are experiencing. Have you looked into nutritional support to help your recovery? I am sorry your doctor has been unable to provide some helpful solutions or at least recognise that these symptoms are valid and should be monitored. I hope this does not remain a chronic condition with no real way of alleviating your suffering, we see enough of these already.

Yes, this. The only time I have felt like this before was when I had glandular fever in my early 20s. I'm past the 3 month mark now and every time I think I'm getting better I have to go back to bed for another week. I think that medics and the government need to start giving more attention to the long term effects of this. Even if they don't care about individuals' quality of life, economically if 1 in 10 people are off work for 3 months or longer (post viral syndrome can last years!) that's not great.

To be honest, this has largely been my experience with GPS dealing with my own chronic illness over the last few years (not covid).
They do not seem to be prepared to listen to you as a patient, without a preconceived idea that it's either in your head or it's anxiety. I can't imagine that would improve in the middle of a pandemic so this doesn't surprise me at all.

This reminds me so much of glandular fever (Epstein Barr virus) and it’s after effects for me. I had it moderately severely as a teenager. That triggered chronic fatigue syndrome that I then battled for about 10 years. They even found it in my blood results when I was 37, 22 years after the initial infection! I’m sure some of these viruses just never leave unfortunately.