Long covid - had enough!

[Firstshoes]

I am so completely fed up. Started with a mild cough in March. Took tests which were negative. I've never had a positive test. Since March I have had constant breathlessness and cough. It is so bad on some days I can't climb the stairs without stopping and I've had months off work. GP initially said hayfever, then asthma and now are saying it sounds like long covid. I have previously been healthy with none of these conditions and I'm late forties. I cough up gunk all through the day and my nose is sometimes tingly and congested. I can't smell anything and have minimal taste. I have had chest xray (clear) and bloods show lung inflammation. I am on maximum clenil inhaler, montelukast, antihistamine and steroid nasal spray. Nothing is working. It's been 7 months and I am so worried I will lose my job. I was double jabbed some time ago. Just had antibody test which was positive but said for either vaccine or previous infection ( which hasn't helped). GP said referral to long covid clinic may be difficult as I've never had a positive test. Can anyone relate or think of anything else this may be/any other meds to try? I just want my life back (I don't smoke). Thank you.

After having Covid in Feb 2020 I had similar chest problems, DH was the same but worse due to underlying chronic asthma. We are both double vaccinated but had Covid again at the beginning of Sept this year. Both of had noticed how after a fairly short sharp flu like version of Covid our lungs are so much better. In fact we are both much less fatigued and feel like a fig had lifted.
No idea if this is a thing but having dreaded the post viral symptoms getting worse after a second dose it’s actually been a bonus..

I am so glad you and your dh are feeling better. I think it's because I can't see an end in sight it's really getting me down. Maybe catching covid would help! I feel I can't even say I have long covid having never had a positive result but what else could it be? The only thing that helps a little bit is a blue inhaler but that's only temporary. I am scared to go out anywhere now as having coughing fits in public is not good at the moment :-(

The antibody test should have been specific. It’s very possible to distinguish which antibodies you have. What test did you use?

Can you afford to pay for this one? It will specifically show you if you have antibodies from an infection only. Not the vaccine

www.bupa.co.uk/health/payg/covid-testing

If you can. I would. Because you are writing it off as long covid by you’ve never actually tested positive when symptomatic, suggesting you may not have had it. There could be something more sinister going on. It’s good your chest X-ray was clear but I’d get a better idea if this could be long covid or if not, be pushing to find out what else it could be!

There are a lot of respiratory illnesses, maybe a CT scan might show something?

also worth getting a spirometry test and lung volume test

Did your GP order your investigations or were you referred to a respiratory specialist? If you haven’t been referred then I think you should push for it.

Be warned that the waiting times will likely be long (unsurprisingly, as a specialism respiratory is quite busy!) but long covid or not there is clearly something going on.

Have you had a Sputum test for infection?
I have had similar symptoms to you (asthma and allergies, def no covid).
When tested had 2 underlying infections. Antibiotics have really helped.
This only happened with referral to respiratory which had a 6 month wait though.

Thanks for the replies. I would pay for an antibody test if it would show if I'd had covid or not but the bupa one has no clinic near me. I'll see if there is a postal one. The one I did was the government antibody test which was a postal one. The GP has been the one requesting the investigations. I have been told the waiting time for a respiratory referral is very long but I should be seen in the long covid clinic sooner (if this is what I have!) I have had a sputum test which showed no infection. It's my nasal symptoms which are also concerning, my nose tingles and is either blocked or running with no sense of smell.

Depending on how supportive your GP is maybe they would consider referring you to both respiratory/long covid and ENT.

It’s really hard at the moment with wait times etc. You shouldn’t have to but it may be worth pricing up a private respiratory consult to see if it can at least give you an initial differential diagnosis and recommendations on which investigations to pursue. Unfortunately private waits can be significant in some areas too at the moment.

Ask to trial swapping the Clenil which is steroid only for a combined ICS/LABA (steroid + long acting reliever) inhaler. Doesn't answer your questions but may help with the symptoms.

Thank you. I have now paid £37 for a postal antibody test which tests for virus antibodies only so hopefully that will make things a bit clearer. The company seem to have decent reviews so hopefully will be accurate. Thank you for the advice re the inhaler. The clenil really doesn't seem to be doing a great deal! I will ring the GP back and ask about other referrals too. I just wondered if anyone on here has or knows anyone with similar symptoms. I feel very alone!

I had the same as you. I was referred to the Long Covid clinicand was under the respiratory consultant. They will do lung function tests etc. Breathing exercises really helped me. Statis Breathing. It finally got better slowly over a year.

Thank you Kitcat. It is good in a way to hear from someone else who has been through similar. I am so glad to hear you are getting better now. I'm off to google Statis breathing !

*Stasis breathing. Also Suzy Bolt Yoga and relaxation for gentle Covid recovery on Facebook was a comfort to me. Lots of great info and other people with similar symptoms.

In my experience you have to push really hard for a Long Covid clinic referral but you clearly are still suffering so i'd keep insisting on one. Hopefully the private test will still show virus antibodies even after so many months.

It took several doctors appointments (including ECG, blood tests and a rheumatology assesment) between Dec 2020 and July this year before our GP finally referred my DS (16yo) and we've been told we won't be contacted about an appointment before this December.

In the meantime DS has being seeing OT and physio (both of whom said he has classic Long Covid symptoms as soon as they saw him) to help him deal with his joint pain and try and lessen his fatigue.

Just a suggestion, but could be chronic sinusitis. Can cause a post nasal drip which causes phlegm to run down the back of the throat and into the lower respiratory areas

I just can’t see why you’d have multiple negative tests when you had symptoms in March. Your initial posts says ‘tests’. One being wrong is a possibility but not more than one?! Or were these LFTs? Did we have these in March?

If it were me, I wouldn’t be convinced I had covid & would be concerned about what else was wrong I have to say. Long covid is a thing but I do worry it’ll be used to brush off other more concerning illnesses as happened to me last year. I had mild covid, wasn’t very ill. This was a few months after having a postpartum haemorrhage. For months after covid I felt exhausted & unwell. My GP said long covid & brushed me aside. I spoke to them several times & said I didn’t think it was long covid but nope, said I was worrying about nothing, long covid, would get better. I moved to a new docs in April & after my welcome consultation, they were concerned & arranged for some blood tests. Turned out I was so severely anaemic I needed an emergency blood transfusion 🙄 I’m fine now. No long covid. I’ve just had covid again, still no long covid!

WhathaveIfound, I am so sorry to hear your ds is suffering. Let's hope his appointment comes through sooner than expected.
Sinusitis was mentioned initially and I have had antibiotics and nasal sprays. GP is sure it's not this now. I have had these symptoms for so long I just can't see an end to it. If I don't get anything through for the long covid clinic soon I will push for a referral to respiratory/ENT I think. Hopefully my antibody test may clarify things but I am aware my antibody levels may have dropped if I had it a while ago. I have been around covid a lot in the past as I work in a hospital so contracting it would have been perfectly possible.

Hi Bobholl, I was having regular LAMP tests in March for work (spit tests) . Not sure how accurate they were? I never had a PCR as I thought at the time these tests were as good but maybe that was the wrong decision. I am not certain it's long covid but the symptoms do fit. I have had full blood work and chest x ray but I will push for referrals if I don't hear soon but the wait is very long. The long covid clinic do thorough investigations with scans and things so if it is something else it should be picked up then hopefully. I am not sure what else to do.

Sounds weird but have you trialled any acid medications (eg. omeprazole)? There’s a link with it worsening asthma symptoms and sinus issues, although I appreciate that neither fit you exactly.

It might not do anything at all but it’s a fairly easy one to rule out by trialling a medication. If it did help then it gives another avenue to investigate the root cause of your symptoms.

Thanks cornetto. GP mentioned this early on and told me to take Gaviscon regularly for a few weeks before eating. I did this but it didn't help

Ah good. It sounds like your GP is at least keen to pursue lines of investigation. It’s not easy for you of course, but honestly that’s half the battle sometimes.

I hope you get a referral/s soon to look into your symptoms closely.

@Firstshoes good luck, it's so frustrating and lonely xx

Thank you xx I so desperately want to get back to normal and do everyday things without constant coughing and wheezing

Sorry you are feeling the way you are. I feel very similar, though still managing to go to work at present. I've just had another conversation with my gp today. As every couple of weeks, though I have had it last Thursday and again on Tuesday. I am completely worn out , have the symptoms of when I had the beginnings of my covid, severe fatigue and muscle ache and a tightening of the chest, where climbing upstairs can be a struggle, plus bad brain fog. Feel like I'm going to have a bad cold, but then the next day or 2 I'm fine.

I've just been given an inhaler to help with the chest tightenings.