I know there’s a lot of different posts about long covid...I guess this one is just to get some reassurance that I’m not going mad. I had suspected covid back in April (before testing was easily available) so it’s never been confirmed I had covid but I had all the classic covid symptoms. Since then I’ve suffered with what I think is long covid...even 9 months on. The long covid symptoms started with fatigue, my asthma symptoms got so much worse, I had brain fog and night sweats and just days where I didn’t feel right.
Today it’s less prevalent but I have random days where I just don’t feel right...I get super tired and have brain fog and just feel a bit weird...it’s always the same feeling but on random days which could be 4 days apart or 4 weeks apart. But I feel like nobody really believes that it’s long covid...I just feel a bit like I’m going mad and these random days are just in my imagination or put down to something else, like general lockdown feelings...but in myself I know something has changed health wise since I had covid. I just wondered if anyone else felt like this? And just felt a bit lost with the symptoms and the support with them?
I know it’s less asthma related but I just thought this might be a good forum to help
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Laurenp4
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I feel exactly the same as you! While I only had Covid-19 back in December (the new Kent strain) I also feel that I have long-Covid. Mine is mainly fatigue, honestly I don't think I've ever been this tired before in my life, and some days I feel like my body is just weak and heavy.
There's just no support for people like us, which is fair enough because the pandemic is still ongoing, but I just wish there was some sort of support that we could have from GPs or nurses. I'm sick of feeling this way and I imagine you are too after 9 months!
I’m glad it’s not just me!! Yeah it just feels like we are never going to know much about it or get much support! It’s so draining! I hope your long covid eases soon!
Fingers crossed that once the vaccine has been given to most people, they will start looking at long-Covid in more detail and be able to give more information about it. I hope you feel better soon too
Laurenp4... I am going through same, if not worse. Mine started in April with hot and cold flushes, extreme fatigue, shortness of breath and l never tested positive for Covid. I felt better in July, went back to work and then in mid October felt sick again and this time worse than l was before with extreme fatigue and excruciating chest pains. I tested positive for Covid this time and spent 2 weeks in hospital but since November it's been stressful. Can't do anything, any little thing I do gives me this bloody chest pains, wheezing, fatigue, body aches. I have done a number of tests...CT scan, Xray etc all normal. We just have to hope and pray we get better soon. The doctors can't help, nobody has any clue what's happening. They say it's long Covid. Hopefully we get through this.🤞 💕
Thanks for sharing your experience, I’m sorry it’s been so bad for you. I’ve had the same with the x rays...all normal - which I’m glad about, but there’s still no understand of what’s causing all these things..it’s easy to feel lost !but fingers crossed it will get better soon, and they will do more research into it all!! X
I feel like I’ve been through long covid too back from October. My husband tested positive but I was negative, however I was poorly and although the symptoms weren’t the usual cough, fever etc I had other mild symptoms but my asthma was bad and has been bad ever since. My maintenance pred was 10mg and I’ve been stuck at 20mg now for so long and I have always been able to wean quite easily.
The extreme fatigue has been frighting..I couldn’t function sometimes or get out of bed..I’ve had a really fast heart rate at times and short of breath with the littlest of activities.
Just like yourself I’ve had tests etc and everything looks fine.
My consultant seems to agree that there’s a chance I have long covid.
Since the start of January I’ve felt some improvement but I’m not as active as I’d like to be.
My step sister has “long Covid”. She never knows what to expect. She describes it as having no brain Velcro, esp. when reading instructions, or figuring numbers. The other day, she forgot how to make scrambled eggs, and just stood there and cried in the kitchen. She is 8 weeks out. Can you smell or taste yet? She thinks those senses are tied to the brain fog, cuz on good days of more clarity, she can vaguely smell and taste, too. All my best wishes, DK.
Yeah the brain fog is the weirdest symptom, i feel so stupid at work sometimes but I just can’t think or concentrate or focus! I never lost my sense of taste or smell but that’s interesting if they are linked!! I hope your step sister gets better soon!
I have just come out of hospital not once but twice. I have had numerous tests and the conclusion is long covid which has acerbated my asthma. I feel deplete of all energy am breathless and cough the whole time. When I wake up I have strength but feel my energy leaving me by lunchtime. A nebuliser helps for 24 hours then I’m back to square one. The dr said I am going to feel like this for months. It will be a real struggle but I am determined to do what I can to get well.
Thanks for sharing! It’s a daunting feeling knowing you’re going to feel like this for a while and not knowing when it’s going to end...I’m still wondering that myself! It’s good you are in a positive mind set about getting well. I have found, that although some days I can’t, or it’s a big struggle...just moving, going for a walk if I can, or doing a stretch yoga class or just walking around the house does help on days I can manage. Gotta keep our bodies moving! Good luck!
I’m so sorry to hear this, sounds so frustrating. I had Covid in April too and had problems with my heart—tachycardia, chest pain, palpitations—for months which was especially scary because I was pregnant. It is such a crazy virus and I think we are only at the tip of the iceberg of understanding it on so many levels. You’re definitely not alone—this is a great support group I joined when I was frustrated it was taking me so long to recover:
Thanks for sharing, I’m definitely going to look at the group you mentioned, I think it’s just really helpful to see I’m not the only one feeling like this, and it’s just more scary as not much it known about it! So it’s good to have a support group of people who feel similar...I think it’s difficult for people who haven’t had covid symptoms or long covid to understand! I hope you and baby are well
Hey, I am really sorry to hear you have felt so unwell for so long. I don’t have long covid. I do have and have had ME since 2013 and the symptoms are very similar. Extreme fatigue, body aches, brain fog and other symptoms including a random fast heart beat. My ME started with a virus. It’s severely impacted my life since then. I can only work part time. It’s so frustrating. I am pretty much on my own. There are no specialists. If I am going through a particularly rough patch then my gp will sign me off work but that’s really it. I recommend that you check out action for ME and the ME association websites there is lots of helpful info on their websites. Take Care. I totally understand how you feel it’s frustrating, very daunting and scary. C x
The UK government have recommended that patients who are CEV should be taking VitD supplements and ensuring their diets are VitD rich. Early results indicate that those patients with covid may experience worse symptoms if they are deficient in VitD. Obviously more research is needed but in the meantime the government has published this gov.uk/government/publicati... NHS recommend 400iu pd but also advise not to exceed 4000iu pd.
I don't take it for my asthma but it's vital for so many things, including a good immune system. The question was about covid and the NHS has recommended that CEV patients boost their VitD intake, especially as many will have been shielding.
I take 2000iu pd and have done for a few years. I recently had a blood test to check my vitD levels and they are only just in the normal range. I was prompted to take it as my family have a history of osteoporosis. I'm now taking 3000iu and various co-factors to boost my levels. I'd be happier if they were in the middle of the normal range.
Various small research teams globally are looking at the specifics of vitD & covid and early research has prompted the NHS to prescribe VitD even though more research is needed. Here's one paper to give you an idea of early findings tropmedhealth.biomedcentral...
It's known that vitD helps some asthmatics reduce exacerbations, but as there are various asthma sub-types, again, more research is needed to identify those who would most benefit from supplements. Having said that, anyone with a known vitD deficiency would benefit from achieving normal levels.
Hi Lauren- the description you give of your symptoms is extremely familiar to me. Working in a boarding school it is almost a year to the day that I got ill. The breathlessness and fatigue were by far my worst symptoms but I recognise the anxiety and depression caused by both illness and exacerbated by the feeling that these symptoms are merely psychological. I found the Long Covid group on Facebook really helpful and note that the government is taking this really seriously as it effects such a large number of the work force. It’s good that we live in more enlightened times, after Spanish Flu they put many people into asylums only to later realise that they were suffering a longer term reaction to a strong viral illness.
It’s good to hear I’m not the only same, but just such a shame so many people have felt so ill so long after having covid! Hopefully the more research they do, the more we will know! A few people have mentioned long covid groups, I think I’m going to join one...it’s just nice to know you aren’t alone in the frustration!
You most definitely aren’t alone! I too had what they think was covid in April but no community testing. I never had to ‘manage’ my mild asthma but since then it’s been up and down constantly. My poor doctors have constantly been on the phone with me! I’ve had oral steroids twice, trials of different inhalers. I managed to actually start running again over the summer which was fantastic but then in October started feeling nauseous and fatigued again which they said was gastritis. I mentioned long covid to the GP and was told “you don’t have that”, but tried explaining I have never felt this way and I have never had such issues with my health - it’s all been since April.
Jan the breathlessness got really bad again and then my heart rate started playing up so I had to go to hospital. Lots of checks CT ECG etc, absolutely amazing medical staff, and they think long covid - potentially causing the gastritis too but that this is aggravating the asthma etc.
Apparently they think it can just come in waves, sometimes when our bodies have had enough / are run down. I am being referred to a kind covid hub for potential respiratory physio - but imagine that will take time. Have you spoken to your doc about the hubs?
Sadly, while they try and work out what is going on, I think it’s a case of bearing with it, finding support from others and ensuring you keep in touch with docs for any medical support you may need at times. I think we need to be really patient with ourselves and our bodies too - we’ve all been through a lot mentally and physically so I am trying to be kind to myself. Hope you are doing ok x
This is helpful to know, mines been exactly the same. In summer I felt so much better and started running for the first time and then September it went down hill again and my asthma got so much worse. I’m now upped all my medication for asthma and it doesn’t seem to be easing
Over Christmas I had a bad chest - had a covid test and that was negative, had oral steroids and they didn’t help, the antibiotics helped a bit but it wasn’t the normal symptoms of a chest infection (I wasn’t coughing anything up) but doctors just put it down the a chest infection.
I might bring it up with my doctor again and mention the hubs. Thank you, being kind to yourself is definitely needed, I think we all need to remember how much we have gone through! Xx
It’s like you are describing my symptoms - all the asthma meds took the edge off but that’s it. It’s still bad and worse some days. But it doesn’t really feel like asthma.
The consultant I saw said she doesn’t think it’s asthma but not to stop my meds. I have a review this week with GP.
Honestly, it was such a relief to hear what they said at the hospital so I knew I was t going mad!
Really hope you get some more answers / support! X
Add me to this list too! I had 3 really bad "chest infections" Nov 2019, until then I used a ventolin inhaler occasionally, no steroid inhaler. This was before COVID and before testing. Since then, I've had all the symptoms mentioned and in hospital with asthma attack. I take Vitamin D, C and B2, I've a SMART watch for heart rate and now an oximeter and I've changed my diet. Hospital consultant listened to me when I mentioned long covid and I had lung tests and appointments booked but cancelled 3 times now. My GP brushes it off when I mention long covid. I do know a few people who have been followed up having tested positive for covid so something is being done. However, that leaves the rest of us who didn't test positive - because we think we had it before!
So glad to see you - I, and the rest of us are not going mad here. The symptoms are scarey, especially the heart palpitations. I've used the Asthma UK site for information and breathing exercises. I can no longer exercise or go for a walk but there are some good exercises for lungs which are seated. When I'm washed out I have to remind myself to move around the house or garden because not being mobile isn't good.
It’s definitely scary but good to know I’m not alone in these feelings.
I tried to book lung tests during asthma reviews but they were unable to do them due to covid, which I understand but also I just want to know what it is!
Definitely good idea to keep the body moving, I notice a big difference when I’m sat all day and don’t move compared to going out for a short walk...I still get so out of breath walking, even more so with a mask on so I just have to remember to pace myself and walk slower!
My respiratory nurse also suspects I have long Covid. I had what I thought was a flu at the end of February 2020 and since then I've gone from having mild asthma to severe. I've had unstable asthma ever since, 4 steroid courses and a few medication changes, fatigue and scary tachycardia. I went back to work in August after shielding ended and by mid September I was off again with breathlessness, coughing, fatigue and terrible anxiety. I had a pulse of almost 180bpm after just walking back to my car. Scared me. The breathlessness and tachycardia is still a problem at times but has finally got a bit better in the last month. I do meditation and have learned some coping strategies for my anxiety and had some counselling. I don't even know if long Covid is in my file, the respiratory nurse just told me over the phone she thinks that's what is wrong with me, rather than just asthma. I'm kind of in limbo a bit as far as treatment. I was put on Fostair MART which is helping but I have to use it 4-5 times a day and I also take Montelukast. I haven't physically seen anyone at my GP surgery since early March except for the nurse for bloods (all normal). I didn't have any big allergic responses. I've also had a chest x-ray but not till November, which was also clear. My dad also died at the end of November which set me back a bit. It's been a long, crappy road made more complicated by the fact that I've not had a swab confirming Covid.
The more I’m reading peoples posts the more I’m thinking my worsening asthma is definitely related to long covid and may actually be long covid as opposed to asthma...I find myself so breathless walking, even if I take my inhalers, and sometimes get random pains in my chest...doctors put it down to a chest infection but I didn’t think it was!
I think it is harder in the fact we don’t have a formal diagnosis of covid when we were ill.
HiI had Covid February/March 2019. Mine are ‘Covid off weeks’ instead. One week I’m full of energy and life, another week is can barely move and so tired! I haven’t asked the dr or anything but this must be related to long Covid, like the virus lying dormant in the body and then when you over exert yourself you get another bad spell. Also chest feels tighter than normal
Yes the covid off weeks definitely resonate with me!! Some weeks I’ll be fine and others it will really be a struggle! Yeah I haven’t said much the the doctor either...I didn’t think there was much they could do. I definitely feel it in my chest so much more since having covid
Hi Lauren, You've had lots of replies already. I had Covid in April. I had long covid from August to October. Fatigue and brain fog. I have had fatigue before, but not the brain fog. My GP said it wasn't long covid because it didn't happen straight after I had covid. But to me its long covid.
One further point of interest. The symptoms have returned to some effect after I had the covid vaccination a couple of weeks ago. Return of fatigue.
What an odd thing to be told - surely if it's straight after covid it's not long covid because it's not been going on weeks or months?! Whereas symptoms that last months would be or if they come and go but are still happening later on then they would be too.
It's an unrecognised but well documented occurance on the various long covid groups lots of people report recovering quite well but then getting worse at the 6-8 week mark with fatigue, brain fog, heart issues and nerve pain that often weren't big features of their initial infection.
I'm just past 10 months and a cold has triggered a major relapse and asthma flare up. It's put me right back to the worst I was over the summer. Thankfully I've come back from it before so I can do it again.
I do think, long term we will recover. It's just frustrating that the underlying mechanisms aren't understood yet, so treatment is likely going to be a very long way off. In the meantime, we have to rest, try to relax and focus on eating and sleeping as well as we can, to give our bodies the best chance of healing.
This actually makes me feel a lot better...there was a slight lag between having covid and feeling impact of long covid so I think people wrote off me having long covid because of the gap...but I knew my health changed as soon as I had it! So it’s helpful to see that research...but you’re right it’s not very well known! I’ve learnt to listen to when my body needs rest and when it needs movement which has helped!
Oh no I agree with that thinking, it makes sense to me. It was the GP suggesting that long covid would have happened immediately after covid that seemed odd. After all, until 6-8 weeks that would be normal recovery (or could be).
I also got told that because there was a gap between me having covid and my asthma getting worse/me getting symptoms of long covid that it wasn’t long covid...but I just knew it was!!
That’s interesting about the vaccine’ hope you start to feel better soon!
Have experienced very very similar symptoms since April 20 when I had COVID , brain fog, palpitations, airway restrictions, an aversion to sudden noises, headaches and occasional low oxygen levels...it is now many months on, chest X-rays now say all clear as do bloods, but still have periods feeling awful and very anxious.
it's frustrating i know! i'm coming up to my 1 year Covidversary and have had an array of symptoms, but also luckily good support around it (was never dx as no tests were available).
there are great support groups online
also check out Dr. Tina Peers on long Covid and Gez Medinger on Long Covid - a film maker gathering a lot of evidence on it.
the strongest theories seem to be around NAD+ deficiency (talk to GP about taking flushing Niacin to check it's safe for you if you go down that route) and also mast cells / histamine (this ties to the NAD+ theory. a lot of people get a huge amount of relief going low histamine, and doctor can prescribe H2 blocker with it to plus help you find antihistamine that helps...i'm about 80% better, more since my doctor started me on the flushing Niacin so i'm hopeful that i'm gonna get there soon! but it's awful i know!
Hi. Sorry to hear of all these issues...I think I have had long covid since March 2020. I have suffered with terrible muscle cramps and this awful itching/burning chilblains in lower body and hands, especially in the evenings and through the night (no rash though). Also I have suffered with brain fog, fatigue and even hair loss (coming out in clumps at one point), and my asthma (rarely an issue for me) has not been so good on/off. I have had various tests/scans, seen a skin consultant. My liver was temporarily over active but this settled down and there were no signs of anything. Anti-histamines prescribed by my doctor have controlled it for past 11 months. I am concerned about having the Covid Vaccine. My doctor says I should have it but cannot offer any guarantee it won't exacerbate the problems I have (itching/burning etc). I am low risk as far as covid is concerned. I wondered what your thoughts are concerning having the vaccine? My major concern is that the anti-histamines seem to be wearing off and I can feel mild cramps and itching now. I am worried that the vaccine will cause more issues. Any thoughts most welcome please! Thank you.
I know these are old posts but I've been suffering from suspected long covid syndrome since feb 2020. But your the first person to mention the itching I too have it. Currently in a relapse of it just since coming out of shielding. I'm getting fed up of it all now!!
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