News from Long Covid Physios

Andy

Andy

Retired committee member
LongCovidPhysio - Jessica "Breathing Pattern Disorders", video 2021

The Management of Breathing Pattern Disorders
https://www.physio-pedia.com/The_Management_of_Breathing_Pattern_Disorders

Yet another Long Covid Physio podcast
Jessica is a Physiotherapist from Calgary, Alberta, Canada, specialising in breathing pattern disorders. She is an ally and advocate for people living with Long Covid and in this podcast shares her interests and experiences in supporting people living with Long Covid. Useful resources discussed in this podcast are in the links below:
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Code: 
https://youtu.be/Avr9Ys4eJ-8

 
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I thought this was a very interesting video, as much, if not more because of the demonstration of how to be a good health professional than anything about breathing e.g. listen to what your patients are telling you; keep learning; keep records; don't think that therapies you've tried before (like exercise) are automatically going to be right for every situation and every patient; maintain a network of colleagues; understand just how hard it can be to do the things you suggest (like pacing).

People in Canada might like to make contact with Jessica - she seems to have had her eyes opened to ME/CFS and could be a sympathetic and useful ally.

I found my reaction to some comments Jessica made that would fit into a psychosocial type of view interesting. For example, Jessica has found a lot of the Long Covid patients she has seen do have disordered breathing. She suggested that people who have had a respiratory illness and for whom it has hurt to breathe deeply might fall into a habit of shallow breathing, because there is an entrenched desire to avoid the pain. But this was expressed with understanding that this would be a natural reaction and not some moral failing. And even more importantly, she acknowledged her speculation, and mentioned other ideas that might account for the disordered breathing such as easily fatigued chest muscles and autonomic issues. And she noted that she is a respiratory physio, so it's highly likely that she is seeing a skewed sample of people with LongCovid. When someone approaches problems like that, with care and acknowledgement of their lack of certainty, there isn't the need to automatically push back against every suggestion that some change in behaviour might help.

I think the podcast deserves a wide viewing.
 
Completely anecdotal, but I read Breath by James Nestor roughly a month ago. Since then, I have been working to optimise how I breathe. I have also been doing long meditation sessions that focus specifically on breath work. I have been meditating for years, but what I am doing now are specific breath exercises rather than other types of meditation like mindfulness.

My nervous system is dramatically calmer and more balanced. After a really focussed meditation session I can feel quite significantly more energetic for several hours, if not the rest of the day - enough that other people will comment on it. Other than the impact on my nervous system these exercises have not yet converted into any sustained health gains and I keep coming back to my prior energy levels, but i'll keep working at it. Even if that is the only benefit I see, it will be worth continuing.
 
I've been thinking a lot of dyspnea lately, mainly because I've felt like I can't breathe properly. I don't have it all the time, and it worsens with PEM. My breathing is more shallow, but I don't know if it's like that all the time and I only notice when I crash - or if it happens when I crash. I have to be very mindful of breathing when it happens, but the feeling of not getting enough air will still be there.

I've been thinking it may have to do with muscle fatigability. I wanted to punch the lady who measured my O2 levels as she told me I just had to breathe more deeply and not be tense. I was struggling to sit upright in her office, and the effort of breathing like she told me was not sustainable with the "effort" of sitting upright. Which she just wouldn't understand so I'm all good I guess.

Edit to add after listening: I found it really interesting that she talks about hoarse voice, and how it can relate to this. My voice changes when I overexert myself, and is one of the first signs I have overdone it.
 
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Hutan said:
I thought this was a very interesting video, as much, if not more because of the demonstration of how to be a good health professional than anything about breathing e.g. listen to what your patients are telling you; keep learning; keep records; don't think that therapies you've tried before (like exercise) are automatically going to be right for every situation and every patient; maintain a network of colleagues; understand just how hard it can be to do the things you suggest (like pacing).

People in Canada might like to make contact with Jessica - she seems to have had her eyes opened to ME/CFS and could be a sympathetic and useful ally.

I found my reaction to some comments Jessica made that would fit into a psychosocial type of view interesting. For example, Jessica has found a lot of the Long Covid patients she has seen do have disordered breathing. She suggested that people who have had a respiratory illness and for whom it has hurt to breathe deeply might fall into a habit of shallow breathing, because there is an entrenched desire to avoid the pain. But this was expressed with understanding that this would be a natural reaction and not some moral failing. And even more importantly, she acknowledged her speculation, and mentioned other ideas that might account for the disordered breathing such as easily fatigued chest muscles and autonomic issues. And she noted that she is a respiratory physio, so it's highly likely that she is seeing a skewed sample of people with LongCovid. When someone approaches problems like that, with care and acknowledgement of their lack of certainty, there isn't the need to automatically push back against every suggestion that some change in behaviour might help.

I think the podcast deserves a wide viewing.
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She is fab isn't she? I loved this podcast as she demonstrates exactly the behaviour all physios should demonstrate (in my opinion!)
 
Midnattsol said:
Edit to add after listening: I found it really interesting that she talks about hoarse voice, and how it can relate to this. My voice changes when I overexert myself, and is one of the first signs I have overdone it.
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Same here.

And difficulty breathing because my muscles feel to weak and fatigued.

I think it’s strange how there’s so many symptoms I have with ME, that other patients talk about too, but no doctor ever talks about and just seem confused when I bring up. Not even the «specialists» or the people at the ME rehab I went to seem to know what ME patients symptoms and typical experiences are like.

I don’t know what it is like in other diseases and what symptoms are relevant to record, but it seems strange to me that there aren’t more documentation of ME patients symptoms, and more curiousity about our experiences.

Like so many patients talk about being extremely thirsty, or peeing more often when they have PEM, or a hoarse voice when they’ve over done it, or not being able to sleep when we’ve over done it and many other examples that I can’t think of right now.
 
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Cheesus said:
Completely anecdotal, but I read Breath by James Nestor roughly a month ago. Since then, I have been working to optimise how I breathe. I have also been doing long meditation sessions that focus specifically on breath work. I have been meditating for years, but what I am doing now are specific breath exercises rather than other types of meditation like mindfulness.

My nervous system is dramatically calmer and more balanced. After a really focussed meditation session I can feel quite significantly more energetic for several hours, if not the rest of the day - enough that other people will comment on it. Other than the impact on my nervous system these exercises have not yet converted into any sustained health gains and I keep coming back to my prior energy levels, but i'll keep working at it. Even if that is the only benefit I see, it will be worth continuing.
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Cheesus, this may be a digression, but....was Nestor's book useful in terms of offering various breathing exercises and techniques. I heard the book focused on the history of breathing practices, and some readers felt a touch shortchanged. I'd be interesting in buying it, but could you help me out. Thanks.
 
rainy said:
Same here.

And difficulty breathing because my muscles feel to weak and fatigued.

I think it’s strange how there’s so many symptoms I have with ME, that other patients talk about too, but no doctor ever talks about and just seem confused when I bring up. Not even the «specialists» or the people at the ME rehab I went to seem to know what ME patients symptoms and typical experiences are like.

I don’t know what it is like in other diseases and what symptoms are relevant to record, but it seems strange to me that there aren’t more documentation of ME patients symptoms, and more curiousity about our experiences.

Like so many patients talk about being extremely thirsty, or peeing more often when they have PEM, or a hoarse voice when they’ve over done it, or not being able to sleep when we’ve over done it and many other examples that I can’t think of right now.
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My daughter had breathing issues after glandular fever but pre CFS diagnosis.
She did a spirometey test and struggled.
The nurse just thought she wasn't trying hard enough!
Results were not normal but written off as lack of effort .Not bad enough at time to persuade GP to follow up.

Hoarseness a feature early on, in fact pre diagnosis ( weirdly picked up in hair test analysis)l which also picked up electrolyte s put of kilter , electrolyte drinks help, especially during PEM)

Breathing is a real issue in PEM. Diaphragm gets so tight that breathing is a conscious effort. Noone seems interested .
 
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Perrier said:
Cheesus, this may be a digression, but....was Nestor's book useful in terms of offering various breathing exercises and techniques. I heard the book focused on the history of breathing practices, and some readers felt a touch shortchanged. I'd be interesting in buying it, but could you help me out. Thanks.
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I listened to the audiobook. The appendix has a series of short, guided exercises. They are not exercises which you can use for routine guidance as they are only around a minute long each, but it is enough to learn about different techniques. I experimented with a few until I settled into a routine that I found useful.

As for the main body of the book, I would not say it is only a history of breathing practices. The first section is split into chapters detailing the importance of different elements of the breath for optimum health. The second section does look at more historical stuff, but still provides substantive information.
 
rainy said:
Same here.

And difficulty breathing because my muscles feel to weak and fatigued.

I think it’s strange how there’s so many symptoms I have with ME, that other patients talk about too, but no doctor ever talks about and just seem confused when I bring up. Not even the «specialists» or the people at the ME rehab I went to seem to know what ME patients symptoms and typical experiences are like.

I don’t know what it is like in other diseases and what symptoms are relevant to record, but it seems strange to me that there aren’t more documentation of ME patients symptoms, and more curiosity about our experiences.

Like so many patients talk about being extremely thirsty, or peeing more often when they have PEM, or a hoarse voice when they’ve over done it, or not being able to sleep when we’ve over done it and many other examples that I can’t think of right now.
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I know a lot of people with MS and their experience is relevant. The consultant is interested in the big picture and things like major deterioration but mainly gives out drug treatments. The MS nurse helps with everyday life and lesser things. For instance there is a machine that helps empty the bladder fully that you can have for a few weeks to try.

The submission to NICE from S4ME asking for ME nurses to be trained is a good one. It would be much easier to talk to a nurse about these smaller niggles we have and it would help them to know how many of these things people get.
 
Mithriel said:
I know a lot of people with MS and their experience is relevant. The consultant is interested in the big picture and things like major deterioration but mainly gives out drug treatments. The MS nurse helps with everyday life and lesser things. For instance there is a machine that helps empty the bladder fully that you can have for a few weeks to try.

The submission to NICE from S4ME asking for ME nurses to be trained is a good one. It would be much easier to talk to a nurse about these smaller niggles we have and it would help them to know how many of these things people get.
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Thank you, that makes sense. I think ME nurses would make an incredible difference. Great submission from S4ME :thumbup:
 
Merged thread

Post-Exertional Symptom Exacerbation (PESE)

From LongCovid physio

at last someone calls it out. Shame it had to come from the LC community.

Post-exertional symptom exacerbation can be triggered by different things, such as usual activities in daily life, changes to sound and light, or activities that could previously be tolerated. It is not the same as “Boom and Bust” cycles of overactivity, because often post-exertional symptom exacerbation is not triggered by overactivity. Showering, getting dressed, walking, loud noises, busy environments, or multi-tasking is not overactivity. Saying post-exertional symptom exacerbation is like a “Boom and Bust” cycle, is patient blaming and unhelpful, and this assumption may be based on ableism.
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a lot of good useful info and links to videos etc

https://longcovid.physio/post-exertional-symptom-exacerbation
 
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This is expressed very well.

Many people experience cycles of higher levels of activity and lower levels of activity, but where PEM in ME or Long Covid is involved the higher levels are still significantly lower that what would have been normal pre-morbidly. There is also a qualitative difference between doing a lot one day then taking it easy the next and a previously easy activity triggering a range of negative physical symptoms that can affect multiple biological systems. Normal over activity makes you tired even very tired, but PEM makes you ill.
 
Peter Trewhitt said:
This is expressed very well.

Many people experience cycles of higher levels of activity and lower levels of activity, but where PEM in ME or Long Covid is involved the higher levels are still significantly lower that what would have been normal pre-morbidly. There is also a qualitative difference between doing a lot one day then taking it easy the next and a previously easy activity triggering a range of negative physical symptoms that can affect multiple biological systems. Normal over activity makes you tired even very tired, but PEM makes you ill.
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Yes. Extra fatigue after an activity and PEM are definitely not the same thing. PEM does indeed make one feel ill.

It's the term "exertional" that seems to cause interpretive problems. Define "exertion". Mainstream understanding of this term can mean extraordinary activity. Activity levels above and beyond the everyday. Whereas with ME, it is the everyday, and even minimal activities that cause symptoms.

Well said in the article, that mild activity such as showering is not over activity.

Many can hopefully relate to having the flu, and going back to work or school too soon. Just getting ready to set out for the day while still recuperating from the flu can exacerbate the illness symptoms. So much so, that a person may realize they are still ill and stay home for further rest and recuperation.
 
It also ignored the phenomenon of feeling better just before a crash. This happens for some people coming down with a cold or flu. They suddenly feel symptoms lifting, then get sick a few days after. When it happened to me I experimented restricting further my normal (in)activity to see what would happen. The crash wasn't caused by activity and I am guessing it is some strange immune system effect.
 
DokaGirl said:
Yes. Extra fatigue after an activity and PEM are definitely not the same thing. PEM does indeed make one feel ill.

It's the term "exertional" that seems to cause interpretive problems. Define "exertion". Mainstream understanding of this term can mean extraordinary activity. Activity levels above and beyond the everyday. Whereas with ME, it is the everyday, and even minimal activities that cause symptoms.

Well said in the article, that mild activity such as showering is not over activity.

Many can hopefully relate to having the flu, and going back to work or school too soon. Just getting ready to set out for the day while still recuperating from the flu can exacerbate the illness symptoms. So much so, that a person may realize they are still ill and stay home for further rest and recuperation.
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I agree, and it is really nice to see things like this that are starting to focus on getting the magnitude and terminology right to stop the minimising and call out supposed inadvertent ablism or basically disability bigotry (which it sometimes is when they look at someone looking ill and enjoy giving them a good meanie thing because they just don't like ill people and think 'they should just go and build themselves up with exercise' or whatever mantra has been put into their mouth as a cover-up to pretend it isn't just bigotry).

Well done for naming that 'source of issue' I think it is useful to begin zero-ing in - although I prefer exertion to the stress or whatever others try and change it to because of the hijacking of that term into mis-meaning (instead of 'stress on the body') it infers that only things we do are included, which is a real issue given that 'not getting enough rest' when we need to pace and noise, vibrations, and not 'sensitivity' but just what normal people wouldn't put up with but could move away from or put a stop to often also make us ill.

And that 'PEM' part is the killer because people don't understand that us being exhausted the next day (if they are even good enough to not make that pathetic assessment of 'at the time you seemed only migrainey like others would be') isn't the 'full PEM', for me I have to rest then in order to not make the 'PEM about to hit' worse and because I am tired but the motherlode is 36hrs in and onwards.

So the 2 bits utterly missed in definition from others:
1. it is not just things we choose to do but things 'done to us' and 'forced upon us' that are probably most likely to put us in PEM on regular basis (and the misinformation has a lot to answer for here... ahem BPS)

2. we get ill, and if you think we look bad at the time or soon after then you've no idea what we are in for in 36hrs time - and if we get forced to accomplish somethign when in that ... well let's just say start having ultimate respect and sympathy instead of the bigoted stand by and think we are 'pathetic' (because that is how some horrible people will see it) because what we do on normal days is their scraping their way through a marathon when they have severe flu that they would never do, so imagine what getting something essential done whilst in PEM involves. And the knowledge it might cause harm you can't recover from.
 
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