I have been struggling for almost 4 years with breathlessness on exertion, chronic fatigue and low SATS. I am unable to walk more that a few feet without getting breathless and dizzy. I feel exhausted all of the time.I have had 3 1/2 years of tests which have still not got to the bottom of my symptoms. The only thing that has shown up is mosaic attenuation of my lungs which would normally be caused by a severe lung infection or covid.
I have never had covid or a lung infection, however these symptoms started a couple of weeks after my first covid jab in March 2021 and worsened after the follow up jab in June 2021. I was given Astra Zeneca vaccine on both occasions.
Has anyone else experienced anything like this? Doctors seem unable to help me. I have seen both a cardiologist and a respiratory consultant.
I am only 59 and everyday tasks have become difficult. I now have a cleaner which helps but sometimes the washing pile builds up and the dishwasher stays unemptied for days.
I rarely go out and have not been shopping sine this started as I do not have the energy to do so. I can just about manage small tasks if I pace myself.
I am still working in my own business (it's a desk job) but I am seriously thinking of giving that up this next year as it's all too much.
Sorry for the long post, I would love to hear from anyone else who has suffered similar issues.
Thanks
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Lily39
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Oh I'm sorry to hear this Lily I am lucky I did not get covid years ago but I did lose someone very dear to me who had it, I was recently at a appointment and noticed a clinic for Long covid surely the Dr can give u something x
Hello Lily. I am so sorry to read this. I have read about the issues some people struggle with after having the jab. Your case seems extreme. Have you seen a lung consultant, had x-rays? A CT scan? A diagnosis of anything? What did the lung consultant actually do for you? I'm sorry for the many questions.
I have seen a respiratory consultant who to be fair has been ruling out the possible causes. I am still awaiting any diagnosis after 3.5 years' of tests. I have had xrays and a ct scan as well as mri. I've tried steroids and inhalers to no avail. Sleep apnea has been ruled out too. My heart is OK now but the episode at the start of all this did cause a tako-subo cardiomyopathy (bit like a hernia) which has mended naturally. I still get angina however this seems to be a symptom linked to dip in SATS if I do too much.
I think the respiratory consultant is stumped tbh. I am still trying to get answers from him, but he has none to give.
Hi Lily. Is it possible to get a second opinion? I would imagine since your symptoms are so debilitating you'd be entitled to some form of disability and more support? Would you be able to join a respiratory rehabilitation group? Have you had a lung function test? Importantly, do you have anyone who can advocate for you ? Sorry for more questions. 🙁
Thanks for coming back to me. I am a member of Benenden Health who may support me getting a second opinion privately. I will look into this. I have a blue badge, but I haven't applied for PIP or anything. I believe that I would be eligible for the mobility part of that. I'm not sure if I would qualify for any other PIP or disability allowance. If I am forced to stop working then I will need to get something.
I don't know what you mean about anyone to advocate for me. I am married and my husband is supportive but he is not terribly mobile and has health issues of his own so I don't like to put on him.
I had lung function tests which showed some impairment. I don't know any technical information on this but it seems I cannot breathe out fully in one smooth breath. It's like I have to do it in 2 stages and the last bit is really difficult to do. I can control the intake of breath more easily but if I do it too quickly it makes me cough. I do not have asthma or any wheezing in my chest.
Hi Lily. It sounds like you have an obstructive issue with your lungs. I looked up Benenden health as I had no idea what it was. Please do consult with them for a second opinion. I think you probably know, but you can contact the citizen's advice bureau for advice about PIP etc.
When I say someone to advocate for you I mean someone who can go with you to the doctor's and help you with making phone calls, decisions, looking for resources, in short someone to stand in your corner. I'm sorry to read your husband is not well himself. I understand you not wanting to put too much on him.
I have an obstructive lung disease. It crept up on me slowly and stealthily over a long period of time. By the time we realised it wasn't just "feeling tired and run down" my lung function was at 35%. I never had any lung infections and rarely even caught a cold. So it was a surprise and a terrible one.
I'm sorry I'm not very articulate today. It's one of those days. Please will you keep posting here. This group is really great for support and I am interested to know how you get on. You are not alone. xx 🙋
From what you describe you should be entitled to both care and mobility components of PIP. Someone to advocate for you might be a local disability support organisation or Citizens Advice Bureau. Do get that help then you can pay for practical care. I had such a bad reaction to Covid vaccines that I no longer have them. I thought I was going to die after Astra Zenaca.
Look at controlled pursed lips breathing technique on aluk website.its v useful to practise often, whn relaxed,watching TV,listening to music etc so u naturally slip into it when breathings off,and will help with low 02,while helping u relax too.its also useful when walking,going upstairs,u cld use whn sorting washing,dishwasher etc.its important to retain some activity, it's gd for heart+ lungs,while pacing x
Hi, I can only commiserate Lily39. I do have some understanding of extreme fatigue due to developing CFS after 5 x pneumonia and a few years of constant chest infections. I had my first bout of covid last June which left me with post covid fatigue (on top of the CFS) for 3 months. It's very isolating indeed. I just wrote Long Covid in the search box above, I realise that you haven't actually been diagnosed with covid however there were many many older posts on Long covid which may be interesting reading, you could just pick out the ones from this forum.
If I were you I'd be looking for specialists in Long Covid for advice. Plus you could give the excellent helpline when they reopen in the new year on 0300 222 5800 uk office hours.
Yes. Although when I mentioned it to medical friends they said there was no chance of the vaccine causing my present lung problems.I am fully vaccinated( until July 2023) I started coughing after that and suffering with breathlessness. Before that I was completely healthy with no respiratory problems. I have the most fantastic consultant . He thinks my problems stem from the fact that I am a woodwind player but I’m not so sure.He did a bronchoscopy and found aspergillus in my airways. What treatment have they tried you on apart from inhalers? It is so exhausting to be breathless as I’m sure everyone here knows. Is there anything abnormal in your blood?
I am sorry to hear that you struggle too. I think the medical world is in denial. They are afraid of a huge compensation bill landing at their feet. My bloods are normal. Nothing tangible has been found to explain my symptoms.
I had a months course of oral steroids and the steroid inhaler neither of which have helped.
I was prescribed Ranolazine by a cardiologist at Papworth which have helped me feel a bit better. This medication is for microvascular disease so I guess it lets more blood through.
Yes, sadly after three years of listening to doctors in denial that vaccines can cause issues in those who were vaccinated even once I believe they have a different agenda. We all know that these vaccines were rushed through and not put through the rigorous testing that other vaccines have come through before use. I know so many friends that have become very ill after these vaccines with various chest issues and other symptoms. But it is not in Drs interest to highlight these symptoms and go against the Pharmaceutical Industry .. too many legal tripwires.
However at the surgery I attend, attitudes have changed both in respect of Vaccines and LC itself. It took their own colleagues to be affected badly to reshape their attitudes and in turn their support for people affected. I believe the blood tests that are available to us at most can show increased inflammatory markers because Covid vaccines and virus carry specific proteins which become hidden in our own systems. There are currently in most countries no tests for these.
have you got mold. Have they done aspergillosis blood tests. These vaccines and antibiotics can leave you wide open to new allergies. They shouldn’t mess about with immune systems
Interesting comment Jack. My blood showed raised levels of eosinophils which are white blood cells which fight allergy/parasites.I have tested positive for aspergillus.
Me two . Two years they’ve known about this and done nothing. All this started after vaccines then antibiotics treatments which gave me drug induced lupus which again screws the immune system damaging the gut and leaving you wide open to “ ANYTHING “ these doctors have destroyed me with to many issues to mention now they don’t want to know.
When the covid vacs started, I started to get more breathless which was thought at the time that my asthma had got worse, so my asthma meds got increased. This was after i had had 2 AZ vaccinations. Breathlessness on walking got worse until i was severly breathless went to A&E in a bad way and found to have multiple clots on both lungs. I put it down to the vaccinations but no docs will confirm that. Stuck on lifelong anticoagulants now. You cant prove it but i refuse all rMNA vaccinations now. There is a lot not well publicised that we dont hear about re covid vaccination damage. Maybe you need a second opinion? It is a very debilitating situation you are in. Commiserations. I wonder a long covid clinic might be useful? All the best for feeling better and stronger, Sally.
Thank you I will look at getting specialist 2nd opinion. Your symptoms sound like they are related to vaccine too. And yes, no NHS doctor will admit this is the cause.
What a mess you ended up in. They were so convincing about these vaccines but with incomplete trials ... well it was going to happen. I had two vaccines and was really ill after each with hospitalisation due to breathing issues and what they described as AF which appeared from no where. I refused any since. I might add in spite of the vaccines I caught Covid 4 times with grave problems which simply get worse and worse .. As I said above Drs I guess are restricted in their ability to state the obvious about the effects of the vaccine etc etc Think of the uproar and litigations that would result. They just tell us to get back to work and refuse and financial support for those who are now debilitated and trying desperately to improve their quality of life. Hope so much that you improve
You too HilsK. I read your message with great interest. I forgot to say by the time i got to A&E i was in heart failure. Lucky to be alive now. Like your situation it came from nowhere or nowhere else so i am convinced vaccines.
yes unfortunately i think that is the case. When i have raised my concerns with docs they close the conversation down immediately. It affects the trust one has had with them now and wonder if they struggle with their code of ethics.
I'm sorry to read about your problems. It seems to me that the medical profession may be in denial about the possibility of Covid jabs having a bad effect on people. Perhaps they are afraid that it might deter people from having the jab. They don't seem to have this problem with other kinds of jabs. I'm old enough to remember the Salk vaccine for polio, which was hastily replaced when it was found to be causing adverse effects.
I think all the ideas that have been suggested are worth following up and I hope you can get some satisfaction. Do let us know how you get on. You do not seem to be the only one with these symptoms.
I am so sorry to hear of your problems Lily. I stopped having the covid vaccine after having bad reactions, although they were nothing like yours and think I am lucky they didn't last. There is an NHS COVID-19 vaccination service that perhaps you could look into, I think you can find this on the nhs Web site and hope they can give you some helpful information x
No. I have extensive emphysema and have had all the Covid vaccines. The only effect they have had was to protect me from the effects of Covid. Maybe you’ve had Covid itself without recognising it.
I am not an anti-vaxer. At the time it seemed the only way out of covid which was holding us all to ransom. I am sure i did not have covid as I was caring for my elderly parents and tested 2x a week to make sure I didn't take anything to them.
I didn't immediately suspect the vaccine was the issue, but after years of tests and no results to explain the lung damage or my symptoms, I traced back the timeline and was shocked to realise that I went from healthy to very unwell within 2 weeks of the first jab and it got worse after the 2nd.
I just wish I was well again, and it's hard to have your life restricted in this way.
I have sympathy for all sufferers. I know I'm not "special" and I'm luckier than a lot of people.
Hi, i have looked up some research and found one that sounds similar to you with the lung function tests and the mosaic appearance on scans. Drug Induced Interstitial Lung Disease (DIILD), The one i looked at was someone who reacted to the same vaccine as you. They treated it with methylprednisolone followed by 12 weeks prednisolone which resolved their symptoms. Their main symptom was the shortness of breath on any exertion. They repeated a high resoloution CT after treatment which showed improvement. pmc.ncbi.nlm.nih.gov/articl... Also would be worth your consultant organising a bronchoscopy with washout to see if there is anything sitting there causing symptoms, and this is the best way to get the samples for testing. I hope you get answers and a way forward soon.
Hi Lily39, I have the same symptoms as you and they happened at the same time. I was really taken back when I worked out my timeline to discover that the extreme breathlessness happened a few weeks after my first AstraZenica COVID vaccination. Unlike you, the private consultant I saw said that it was probably the vaccine which did it. I saw a GP after I had had a particularly bad and distressing episode of breathlessness when out walking in the August after my vaccinations but he wasn't particularly interested (I think that was because I had managed to walk back to my car, all be it very slowly) but told me to put an appointment on with the asthma nurse and to go to my local hospital for a chest x-ray. She told me it wasn't my asthma. The other thing it could have been was my heart. I have a replacement aortic valve and my mitral valve doesn't work properly. A year or so later I eventually got my "regular" echocardiogram and about 6 months later a GP told me that my heart wasn't causing my breathlessness. It was at that stage I got a referral to hospital for spirometry. The waiting list was considerable so I asked Benenden Health for assistance in getting a diagnosis. I got a cancellation at my nearest private hospital (waiting list there was about 2 months) in May 2024. Since then, I've had three spirometry tests, been on prednisolone (which did nothing), an ultrasound of my abdomen to see if I had a paralysed diaphragm (my diaphragm protrudes into my right lung and has done for years) a CT scan which showed that one side of my heart is enlarged. To Luferbec and Salbutamol (which I feel doesn't help) my consultant has added Montelucast, Spiriva and Mometasone Furoate. At my first consultation, my lung capacity was 49% and went up to 54% on my third. My peak flow was 210 and increased to 230. I go back to see my consultant in the middle of January but I now have to pay for consultations and tests myself as Benenden only pay for up to 6 months or diagnosis, whichever is the earlier. I don't think that Beneden pays for a second opinion - you have to be able to tell them what the waiting time at your NHS hospital is and how long you have been on it.
As someone else has suggested, report what has happened through the Yellow Card scheme - I did.
Like you, I just find it so debilitating and frustrating not being able to to the things I used to be able to. I keep telling myself to concentrate on the things that I can do. All the best.
Wow, thank you for this information. I do bounce between "I will fight this" and acceptance that I have to pace myself and find a way to get the best out of life despite the restrictions. I think the latter will bring me more peace and enjoyment in the long run.
I really sympathise Stoer .I hope your consultant had some answers mid-January.I have a CT scan tomorrow and an appointment with my consultant on Tuesday morning after they’ve looked the scan. I find it’s difficult to raise concerns about the Covid Vaccines as you’re called an anti-vaxxer but I’m actually fully vaccinated until July 2023.
Hi Rosydays, the way I approached the question of the possibility of the vaccine causing my breathlessness was to tell my consultant my timeline of what I was doing/not able to do and when. I then said that I wasn't saying that the vaccine did it and he replied "It probably was". I eagerly took all the vaccines offered up until now (I'm 69 so get offered the Covid vaccine on age grounds only). I'm now wary about taking another one, but I think that I'll mention this at my next appointment.
I hope you get some answers next week (with effective treatment to follow).
Hi Lily, sorry you have not been well. I only have 40% lung function with my Emphysema, I did have the first 3 Covid injection Astra Z, like you I was not well, I do not have flu jab either, while I was in hospital they said I tested positive for Covid, althoughI had no symptoms whatsoever. I can't walk far, lucky my husband is strong and able to help with most things and is a great cook. Both in our 70's. I hope your team figure out what is wrong so at least something can be done to help you. Have a good New Year, and wishing you well.
hi yes I had similar happen after my first and only AZ vax I quickly became very ill (within hours) and my sats kept dropping, completely breathless heart bonkers and very high hr on being upright etc. at respiratory clinic sats kept dropping to 68 on moving, and they couldn’t understand what was happening.
Thought possible autonomic dysfunction since I was having Pots symptoms. I didn’t get the tests respiratory clinic were wanting to do as it involved injection of contrast dye. So I Plodded on with no answers just being told how ill I was by doctors and prescribed more and more medication (most of which I haven’t taken as I was slowly improving) but they just didn’t know what it was and a year later eventually saw cardiologist and he thought it was ‘shunting’ .. he had seen this with a few athletes after covid infection. But by the time I had stress exercise test (although I could only manage a very short time slowly my sats were back to normal (a year and a half after vax). I was still feeling quite unwell but so much better than I had been and could do short walks by this time. My lung ct showed the same mosaic thing. Although I have slowly improved compared to how ill I was, 3 and a bit years on my health has taken a big hit compared to what it was pre jab and I’m 56. My sympathies are with you cos it’s just crap
The more I'm hearing from people like you I realise this is not as uncommon as the doctors would have us believe. Yes it's rubbish to be unable to lead a normal life. If I get any kind of answers I will definitely post them here as it may help someone like you too.
My son had bad reaction to his 1st+only covid jab - can't remember which one it was.his arm swelled up,down to elbow,extremely painful&hot,his breathing was affected and his heart rate was erratic; he felt really ill. He went to covid injection clinic for booster - but both nurse×dr put his previous experience down to the covid jab + refused to do it & they advised against having any more
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