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.....)

[Isaidnomorecrisps]

You are all so great - and sorry if this has been covered elsewhere.
Of course if sufferers are anxious and pills would help then they should be available.
Thanks too to @vinoelle. My other half works at a medical school and said there is no research taking place on this that he can see at the moment. Yet up to 10% of us may end up in this situation. If only economically this has to be relevant at some point.
Being called anxious, as the only explanation, is my point.
Honesty is all we want, and to say there is no other knowledge available yet. Which is the truth, right?
Why can’t GPs across the UK be given guidance on responseS? Is there a professional association which could disseminate?
On the couple of groups, with several thousand people, the age range in general seems to be 20s to 50s.
I have no underlying medical problems, parents hale in their 70s/80s. Many other are the same as me; fine otherwise.

[tiredwardsister]

"Sadly many drs just want you fixed and gone"
Perhaps you could think about this from a different perspective I want my patients to get better and go home not because I want them out of my life but because that is ultimately the best outcome for them and their families.
But no HCP has a magic wand that can cure everything instantly, the body works hard to heal itself, lots of factors will effect how quickly and how effective this will be, age of course being the number one, but also severity and type of disease other underlying co-morbidities obesity and severe malnutrition included, nutrition, smoking or previous history if smoking, general level of fitness and the patients own mental health. Over the years I've seen people with severe illness who by rights should even be getting out of bed living a normal life and also patients with relatively minor illnesses who are unable to even walk to the shop (Im not criticising the latter here). There is no magic bullet or shall we say pill that can make you better. GPs and all HCP are totally overstretched, we'd love to help you draw up a rehab program of increasing exercise, analyse your diet, discuss your worries and teach you mindfulness or whatever but frankly the vast majority are going to have to work this stuff out for themselves while we concentrate on trying to give some care to those who cant help themselves because they are toil or usually due to age and multi underlying conditions and therefore really do need an HCPs very limited time.

[LetsBeSensible]

c19recoveryawareness.com/

According to some GP s I spoke with

• it’s not covid because I have not been tested for covid and had a positive result (I’ll in March, tests not available until May)
  

-it’s not covid because covid resolves after 14 days

• I will just have to make the effort to come in for blood tests (can’t physically get myself to the GP. Isolating alone)
  

And I’ve got a good GP!

[Week14]

I'm lucky that my experience has been positive OP.

Mid March was the start of ot all,

My G.P was very supportive on the phone, hospital admission was considered.

Another G.P called me unexpectedly the next day to review me.

I have been given medication for suspected pneumonia, pleurisy, acid reflux & Labrynthitis.
I have also been given pain relief.

I have had a Chest XRay.

I rung the British Lung Foundation myself in April and spoke to a nurse for 30 miniutes, she was fantastic, and I self referred to the local community Therapy team.

I now have a Respiritory Physio who is totally supporting me, a SALT has also liased with me on the telephone and I declined input from an Occupational Therapist.

My G.P is calling me this week to review me.

Its a waiting game OP, it will get better in time.

[tiredwardsister]

"I will just have to make the effort to come in for blood tests (can’t physically get myself to the GP. Isolating alone)"
Im not trying to be goody here but what do you want your GP to do?
Are you aware that HCP's are strongly discouraged from going into someones home unless its absolutely essential? My community colleagues are doing consultations for very vulnerable children in patients gardens rather than entering the house. This is to protect themselves the children and their carers and then other children they might see afterwards. There is also no point in bringing you into a surgery for a blood test and increasing your risk of Covod19 if even if your blood results were abnormal if nothing is going to be done about it. Your blood results might indicate that you have had a viral infection but that still doesn't mean that there is any treatment as any one with glandular fever will tell you. Or you might have post viral mild anaemia but all any GP s going to say is buy an iron supplement. Will the results of any tests effect any future treatment if the answer is very likely to be no then GPs etc have to weigh up the risks to themselves their staff and you and of course other patients of doing that blood test.

[Guylan]

I appreciate there are no treatments for those still feeling ill many weeks after getting CoVid so GP’s can’t offer anything, but they can acknowledge you are still not well and not try to immediately frame it as anxiety and depression.

I have severe ME (bedridden last 6 years, ill for 22 years). I remember the first few years when doctors - having had little training on ME and what they did have was mainly inaccurate as the incorrect predominantly psych based model of ME was dominant - would suggest I was depressed and i could physically do more if I dealt with the alleged depression. This happened to most people with ME. It was so difficult because i knew I was not depressed but v sick. This is not to belittle depression, it is just not what I had and what might help for depression did not for ME and could make me worse by encouraging increasing activity beyond my limits imposed by the illness due to the energy metabolism problems in ME.

So many of us with ME wish too we were advised at the start of becoming ill to pace carefully and live within our activity limits by our doctors. Anecdotally the few who did had a higher chance of making significant improvements or at the very least not becoming further disabled. So my unsolicited advice to someone still feeling ill a few weeks after a virus infection is rest as much as possible and accept you may have to make long term adaptations, work, exercise etc, to give you the best chance of recovery.

[ChubbyPigeon]

So I had what i assumed was longtail covid.

Not as bad as some people on here, but i get breathless so easily. Like walking up the stairs im short of breath and my heart is pounding. Im young and before this I was relatively fit. Now I just feel exhausted all the time, im sleeping 12 hrs at night. Some days are worse than others, it comes in waves. Anything above just walking ariund the house wears me out, my chest gets tight and sore and breathless

I had all the symptoms of covid at the time, my o2 sats since are variable but have dropped to 85! Ive felt dizzy and spaced out.

I didnt have a swab as it was mid/end of march.

Ive had an antibody test and it was negative. So im not sure where I stand there. I feel like now its going to look like its in my head even more

Tbh ive just assumed this was to be ecpected. Ive had a relatively bad virus. I had similar as a child where i was just exhausted for months following a flu-like illness. My mum had pneumonia last yeat and it took her nearly a year to fully recover.

Theres nothing really my GP can do for me at this time. They know no better than me whether this is longterm or not, like a lot of PP have said there isnt a magic wand.

[Guylan]

To add to my comment above, @Isaidnomorecrisps, I attach a leaflet written by the ME Association for those who have had CoVid and are still not feeling well many weeks later. They advise approaching it as you may have post viral fatigue or post viral fatigue syndrome and their advice is good old fashioned convalescence.

By the way I believe it’s too soon to know whether this is going to develop into ME, post viral fatigue can be long lasting but thankfully ultimately self limiting if managed well at the beginning. Link to leaflet and management advice for those still feeling ill many weeks later after getting Covid19.

meassociation.org.uk/wp-content/uploads/MEA-PVF-and-PVFS-Following-Coronavirus-Infection-30.04.20.pdf

[tiredwardsister]

"but they can acknowledge you are still not well and not try to immediately frame it as anxiety and depression."
You are taking about an overstretched NHS that doesn't even have the enough time to give to patients who are unwell and that we can help let alone give out platitudes to those we cant.
Im sorry this is how it is but this is the reality the NHS and its staff are simply drowning under the weight of many many patients, we have experienced 10 years of austerity with an ever increasing ageing population with multiple complicated health conditions and now Covid19 as well. I don't personally work for GPs but I know everyone I work with is trying their best in a totally impossible situation most staff were at breaking point before Covid19, we have come through an exceedingly stressful and worrying time many hospitals have lost colleagues (we have lost two) we were poorly prepared for this. It's an illness we don't really understand, we don't know what the future for this thing will be, will there be a second spike; we all desperately hope not but no one knows. Wevsee people flouting lock down rules and fear the outcome.
Most HCPs sadly are only able to treat and support this who need and will benefit from medical intervention not acknowledge the worries of those who they ultimately cannot help.

[Haenow]

I have so much sympathy for people who are struggling. Post viral illness is a real kick in the guts.
Unfortunately, I do think some people have unrealistic expectations of the health service. The level of follow up people think should be there has actually never been there! I’m not condoning this, just explaining,
There is a lot of excellent, reputable advice online for respiratory physio exercises and non respiratory physio. I wonder if some people have this idea in their head about what you get in hospital and it’s not based on reality. You are not getting intensive daily physio, OT and SALT input in hospital. You get some input and it’s mostly very good but it’s not at the intensity that some people are imagining.
The lack of therapies on an outpatient basis isn’t solely due to Covid-19, it’s due to other factors such as; reducing risk of covid.
If you’ve had normal blood tests, a clear chest X-ray, normal ECG and ECHO etc, I cannot see the rationale for referral for ongoing tests right now. Lung function tests are not being performed routinely due to the risks of spreading the virus.
Respiratory consultants will have a massive back log of existing patients and new ones, some of whom will be people who have confirmed COVID-19 respiratory issues.
There is a lot of understandable panic about lung damage but as a PP said, let’s not focus on this as we know now Covid-19 is not primarily a respiratory disease.

All that said, just because your organs are not damaged does not mean you are not poorly and it is 100% valid to be really struggling.

[Jingstohang]

This is exactly how GPs deal with chronic pain and chronic fatigue. Maybe theyll develop a (shit) post covid recovery programme like they have for chronic pain.

But other than that theres not much they can do - like chronic fatigue a lot of the advice is psychological and about managing things not curing.

[Guylan]

@tiredwardsister, I am sorry my comment seems to have upset you a lot. I appreciate doctors and nurses are rushed off their feet. I also tried to make it clear that I know there is nothing doctors can do for post CoVid patients who are not making immediate recoveries.

However, my personal experience as someone who has had years of v disabling ME triggered by a viral infection that if a medic had just said at the beginning we accept you are ill that would have caused me a lot less frustration than being told there was nothing physically wrong with me and all my symptoms were due to anxiety and depression when I had neither. It takes minutes to acknowledge someone is ill even if there are no biomedical treatments. I have so many friends with ME who also wish medics had just said we believe you are ill even if there is no biomedical treatments we can offer as they haven’t been developed yet.

Also my experience of ME and those few medics who are knowledgable know that the best thing for those suffering post viral fatigue is to pace rest and activity and not pushed to do much before their body has fully recovered. If they don’t long term chronic illness can develop. None of this takes much time for the medic to advise but can help so much.

[Redolent]

The UK isn’t publishing figures of those who have recovered from coronavirus, so people don’t really understand the scale of the problem. All the emphasis so far has been on measuring deaths, but the long-term complications of this illness are being increasingly documented.

[FluffyKittensinabasket]

The post viral effects are the the new ME / chronic fatigue.

[tiredwardsister]

I'm not upset I just think most people have no idea what's going on on the NHS. Yes "It takes minutes to acknowledge someone is ill even if there are no biomedical treatments" but do you have any idea how many patients there are out there or how desperately short of time many NHS staff are? From my own personal experience and that of colleagues NHS staff often don't have time to communicate and update properly relatives etc of those who are dying. We don't want to do our jobs like this, but we are firefighting and prioritising (as our training has taught us) in an ever increasingly difficult situation.
When I started nursing (many years ago) there was a poem on the wall of an ward talking about what we'd like to do, how we'd like to spend time with patients including listening to their worries etc but basically "there are too many of you and not enough of us". That was 30+ years ago now it's even worse.
Few can hand on heart that they are consistently going the care that they want too.

[Ernieshere]

@ChubbyPigeon Did they ever test for Glandular Fever when you were a child after the virus?
I have had G.F and suffered post viral chronic fatigue, which lasted 3 years.
I was seen by the CFS service at the hospital.
I would work 5 days, in bed by 6pm, spend the whole weekend on the sofa watching my life go by.
It was soul destroying.
I now have post Covid fatigue.
I wonder if G.F sufferers are reacting bad to Covid.

With regards to the Antibody test, some people produce Antibodies later, some never at all, from what I have read. It doesnt mean you havn't had it.
My colleagues that were unwell for approx one to two weeks have tested positive.
4 of us who are still suffering since March, with S.O.B/Wheezing/Tinnitus/Joint pain have tested negative. 2 of us have had Glandular Fever in the past.

[fedupofbed]

Another long hauler here. 16 weeks and still bed bound.

I agree the NHS is stretched and that there are limitations as to what can be done. However, when symptoms as severe as breathlessness, plummeting SATS, chest pain and fluctuating heart rates are presenting week after week, month after month, there should be regular monitoring even if initial tests show clear.

Yes, hopefully, they are post viral symptoms that will ease over time. But it's important that complications or other similarly presenting conditions are ruled out.

Also for the sake of science we should be regularly monitored - this is a novel virus and we need to understand its mechanisms for future prevention and treatment.

[Haenow]

@Redolent

The UK isn’t publishing figures of those who have recovered from coronavirus, so people don’t really understand the scale of the problem. All the emphasis so far has been on measuring deaths, but the long-term complications of this illness are being increasingly documented.

Given how late we were in rolling out the testing to everyone, it’s going to be almost impossible to identify who has a post Covid type syndrome and who has other things going on.

[Ponoka7]

As someone who had unexplained illnesses and then after diagnosis had post viral CF, the nightmare really starts if you can't work and have to start fighting the benefit system. I missed out on around £8k of benefits, one year and lived in true poverty.

This is going to be a massive issue while we've got a Tory government.

We need the recognition of vague, varied and long term symptoms, by the NHS to start with. Then the support via our GPs or Covid clinics in hospitals.

The business of track, trace and isolation isn't going to work for people on lower wages. People may need an earlier retirement age and the business of getting every disabled person or those who are carers, back to work, has to be reviewed.

[SellFridges]

I don’t think this is unique to Covid. We have found the same with various non-acute issues. The NHS is only really able to cope with acute or relatively simple, almost big four (asthma, diabetes, arthritis, vascular) chronic illness.

[Redolent]

From Forbes, two days ago;

“In the Netherlands, the Lung Foundation, together with the University of Maastricht and the CIRO group,* surveyed 1,622 Covid-19 patients who had reported a number of long-term effects from their illness. Ninety-one percent of the patients were not hospitalized, which indicates that the vast majority of the surveyed patients would fall under the category “mildly symptomatic.” The average age of the patients surveyed was 53.

Nearly 88% of patients reported persistent intense fatigue, while almost three out of four had continued shortness of breath. Other enduring symptoms included, among other things, chest pressure (45% of patients), headache and muscle ache (40% and 36%, respectively), elevated pulse (30%), and dizziness (29%). Perhaps the most startling finding was that 85% of the surveyed patients considered themselves healthy prior to getting Covid-19. One or more months after getting the disease, only 6% consider themselves healthy.“,

[ostinato]

It’s depressing how many posters are willing to excuse this behaviour from HCP. The fact is women are disproportionately more likely to be prescribed ADs for a wide range of symptoms that could only be peripherally be anxiety or depression related.

I was reading just last week about family carers who are struggling to cope with the unavailability of respite care being given ADs effectively medicalising a non-medical problem. These people are struggling to cope because they're being asked to go beyond what is physically possible eg one person giving 24/7 care to another person. They shouldn’t have their brain chemistry changed with ADs any more than they should start shooting up (putting aside the criminality of heroin).

I have fibromyalgia and the number if times I’ve been offered ADs is unreal...and by doing that the doctors are essentially saying “we can’t/won’t explore better ways of managing your pain, so hopefully with these ADs you’ll mind less about being in pain all the time”.

But the more people that excuse this by saying it’s fine because the NHS is stretched, the less we accept how shit the NHS actually is for many patients, particularly women, and so nothing will change.

Oh, and I echo what a PP said about carbs...I also find cutting out starchy foods helps with my fatigue.

[ChubbyPigeon]

@Ernieshere no I have never been tested for glandular fever.

Its interesting though as now I think about it my dad had GF a couple of months before. Wonder if maybe I had G.F then and then a second illness set off my symptoms? He was ill for ages with G.F, it might have even been closer than a couple of months. I was a child so dont really remember

Thats how I feel now, i work and then my free time Im just resting. At work I feel like i really have to push to get through the day and then it takes me the whole bloody weekend to recover!

[Lightsabre]

@tiredwardsister, but how do we know whether we'd benefit from medical intervention if we're not even being tested for things! It's not enough to say we don't know about this therefore we can't help you at all (which is what is happening to a lot of us).

[ChubbyPigeon]

Tbh the time I was ill my parents didnt really believe me which I dont think helped, so i didnt see a dr or anything. So I was made to act as normal, didnt really have chanve to recover and then was exhausted for a long time.

Similar thing with this I guess I had my 7 days off and went straight back to work, whilst I was still feeling really tired and breathless. And I guess I didnt allow myself recovery time.