Long-term asthma recovery queries - Asthma UK communi...

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Long-term asthma recovery queries

garfunkel profile image

Hi all,

I suppose this is a general question about long-term asthma recovery, as this is uncharted territory for me. Or if it's even asthma-related. In May 2020, I had several asthma attacks, which heavily restricted my mobility for the remainder of the year. I used to go to the gym twice a week, play squash and run outside, so I've found the movement restrictions very challenging.

I was put on the relvar inhaler towards the end of the year and this, in conjunction with montelukast tablets, have made a big difference. My asthma nurse has had me taking my ventolin inhaler half an hour before walking, to open the airways up, and I've been gradually walking more and more. There's been a sizeable amount of pain tolerance - some days going better than others - though I feel it's gradually going in the right direction and getting outside again has been a big boost for my mental health. On good days, I can comfortably do 6000 steps, sometimes more (my best is 10K). I try to take things somewhat slowly and breaks when I need to, which I think helps.

I still feel physically restricted, though. It can be unpredictable. I was walking last Thursday and after a few thousand steps, felt some discomfort/pain in my chest. It increased, but I kept going for a while, and when I got back to the house, I was in a lot of pain. The next day, I bent over to unpack a few shopping bags and that was enough to leave me with pain for quite a while, which I felt even just moving between rooms. I felt more like myself by Sunday, but after walking for seven months now, I find that unpredictability and the limitations very frustrating. Jogging and running are completely out of the question.

My peak flow readings are good. They're consistently around the 630 mark (sometimes lower, sometimes higher, but I think that's the average) and they don't dip when I have pain, which is

one of the reasons I wondered if it could be a separate issue. At one point, they were quite a bit lower, but changing medication brought them up.

Prior to the attacks, my asthma had been well-controlled by a clenil inhaler for over a decade (I developed asthma at 18), and as I mentioned earlier, I was very physically active, so it seemed strange to me that I’d suddenly have all of these issues. Maybe that’s just how it goes sometimes, but I have wondered if I could possibly have had covid-19. At the time of the attacks, my chest and throat were bad, and I had a horrendous cough. I wasn’t tested at the time, so it could be entirely unrelated (a bad cold, say), it’s just something I wonder about. I sometimes wonder if having my chest x-rayed or other tests could be helpful, in case there is another issue (or covid-19 damage), but it was never suggested by my GP (who I haven’t seen in-person at all during this). I sometimes feel like I’m in a bit of a medical limbo, as I’ve been given no real timescale for the recovery and I don’t really know how to categorise myself (I suppose long-term health condition is probably the best term).

This became a bit of a ramble, but I guess I’m mostly wondering if anyone has had similar experiences with asthma and a lengthy recovery period, and if so, do you have any advice? Is it just something that might take a long while? Or could it be a non-asthma issue?

Thanks for taking the time to read this; it’s great to have a community like this to share experiences in!

10 Replies

Hi,

It does sound like it could well have been covid, given the symptoms you describe - always a tricky place to be as often people seem to be told "oh well we don't know it was that so you can't access/don't need this support" - yet a huge number of people will have had covid without confirmation!

The pain doesn't really sound asthmatic to me, especially combined with you saying things are generally better since the Relvar and montelukast (suggesting that any asthma issues were/are controlled by them which is really good) and that your peak flow remains good for you and remains largely similar.

It could well be the impact of having had covid - not necessarily long covid as such but issues that were triggered by it and sort of remain. A chest x-ray probably wouldn't show anything as most people don't have lung damage because of covid, although a doctor might want to do that to check I suppose.

One thing covid definitely does is often cause altered breathing patterns at the time, which can then easily remain because our bodies like to sort of adopt them/keep them out of habit. This can also happen for all sorts of other reasons, especially from either one asthma flare or (pre often) from issues over time - it's difficult to breathe either acutely or generally not great over a period of time and these weird patterns develop. This then causes symptoms similar to asthma which can include tightness, coughing, shortness of breath, wheezing and, I imagine, pain because it's a mechanical thing which involves muscles. Some people find it's much of the time (eg they're constantly breathless) but others find it's on exertion. Because it's similar to asthma, often people think it is asthma because it's on exertion. But if it is breathing pattern related then it needs treating in a different way as it's not caused by inflammation.

Therefore very often it just continues because more and more meds are thrown at it which won't work. It IS tricky though as it can either happen instead of asthma or run alongside asthma, which is what it sounds like to me (if it is this causing your symptoms on exertion) as it sounds as if your asthma bit is now well controlled - but you have this add-on.

Obviously I might be totally wrong but maybe worth investigating?

Breathing exercises work brilliantly when symptomatic, such as when you feel the pain when you're walking or after you've done "enough" on a particular day. They should mean that, after a few minutes, the symptoms eg tightness should be relieved.

This page from the BLF (British Lung Foundation) is good and has some ideas (the breathing rectangle I found good but am sure it's a bit trial and error for people):

blf.org.uk/support-for-you/...

and this site was recommended by a respiratory physio I saw a while back (to do with breathing pattern issues in asthma). It's free to sign up, easy to do and works through breathing retraining - including building up to using the techniques on exertion which is why I thought of it for you.

lifeguidehealth.org/player/...

It might be worth discussing possible respiratory physio with your GP but I know of people who've been told no because it's just dismissed or no because they haven't got proof they've had covid 🙄. Unfortunately they are few and far between and will be in huge demand now. But worth asking. Honestly I think literally everyone should see one for assessment, asthma symptoms or not, covid or not, because in so many people it develops over time anyway and is easily sorted.

Anyway that might not be your issue but worth a try. At least you've got the reassurance that the asthma changes a while back seem to have helped - hopefully you can get this last bit sorted too!

garfunkel profile image
garfunkel in reply to twinkly29

Hi twinkly29,

Thanks so much for your detailed reply! That's really interesting about the breathing patterns; I'll definitely give those links a thorough going over and hopefully they'll provide some benefit. It does sound for sure like it's worth investigating.

I really wish I'd been tested for covid at the time, even if was just to rule it out. A while ago, when I tried to describe the chest pain/tightness (I think it feels muscular?) to a GP, he was quite dismissive; I think he put it down to a lack of physical activity then (or even anxiety, which I 100% know it isn't), as this was when I was just getting back into walking regularly. But over a half year on, I don't think he could be as dismissive. I hope not, anyway!

I've noticed I have more pain whenever I have a cold in my chest and that my walking is considerably more restricted, which is something I'd never experienced before. I'd skip the gym when I had the cold, but I could still walk for ages without issue. I also feel like I'm getting more colds than before, which could perhaps be down to the relvar.

I might call my doctor's surgery tomorrow and explain where things are at, to see what they think, and hopefully they won't just brush me off.

twinkly29 profile image
twinkly29 in reply to garfunkel

I would guess the getting more colds thing is just because everyone has had restricted interactions with others for well over a year and, in being out and about more and being nearer others, we all get more colds and things. It's the classic thing that happens in schools after every holiday.

Hi Garfunkel,

Were you tested for Covid at the time ? It might be worth asking the GP if your chest pain and problems might be something other than asthma?

Hi Paul,

Thanks for replying! I wasn't tested, unfortunately. I really wish I had been, even just to have more information available about what could be going on. It's been over six months since I spoke my GP, so I think it couldn't hurt to get in touch and see what their thoughts are.

Can you describe your pain in more detail? I wonder if you could visit a cardiologist to ensure nothing is going on with your heart as that can cause pain that mimics asthma. I had covid and had heart issues for 4-5 months afterward with severe pericarditis-

You can definitely have discomfort and pain from inflammation with asthma but the lungs have few nerve endings so I'm wondering if the pain is from something else.

Regardless, I really relate to everything you said. I used to run 20 km a week and now I mostly do walking, bike rides on flat roads, and yoga because my asthma makes it challenging to do the same kinds of cardio I used to.

It's so frustrating how the body can change and previously controlled asthma can suddenly flare up and require all kinds of new meds and feel completely beyond your control.

This group is amazing, I agree! So nice to find kindred spirits.

garfunkel profile image
garfunkel in reply to hilary39

Hi hilary,

Thanks for replying and sorry to hear about your experiences with asthma, and covid. Hopefully you're doing better now!

I don't know if I'm great at describing it, but it feels like a tightness or constriction in my lungs area. Over exerting myself when walking (what that means can vary, depending on different things), like I did last week, brings it on and then it normally takes a few days to settle. Having a cold in my chest restricts me in a way it never did before and it does feel like they linger for longer, but that could be unrelated.

The lack of control is definitely frustrating, as it makes it so tricky to plan ahead.

Hi,

I would check everything that has been discussed - the pain doesn't sound like asthma. If there is no physical problem after being tested, then another alternative would be to see either an osteopath or chiropractor. After much severe coughing during a flu, my chiropractor was able to work on the muscles etc of my ribs, after which I felt a lot of relief in that area. My chiropractor works on ligaments, muscles and manipulation which I find extremely helpful.

Wishing you all the best.

Hi Tugun,

Thanks for replying! That's an interesting suggestion about an osteopath or chiropractor, and I'm glad to hear it's brought you a lot of relief. I'm far from an expert, but I do feel like it's muscle-related, so that's definitely an avenue I'll explore if I don't make any headway with any further tests.

Hi Garfunkel, reading the above replies I think you've had some good advice. I just wanted to add, I had covid back in march 2020 and have struggled with asthma control and long covid since.

One of the key issues I've had, is chest pain both on exertion and when my asthma has been flaring up and my experience is very similar to your description. I've had good investigations, via my GP and consultants to ruled out any physical issues with lungs and heart. I find the pain is linked to reduced movement when I'm sick or asthma flaring. Stretching and massage of my mid/upper back and shoulders really helps. As does using my ventolin - I presume it's overworked muscles with the effort of breathing.

As an aside there are quite a lot of resources online for post covid breathing issues - I found the post covid stasis breathing course from mount Sinai hospital in the USA was really helpful and it's free!

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