If there is no way of distinguishing between a psychosomatic (but by no means "not real") and "physical" problem, then there is no way of saying how many fit in either camp. Sorry.
Why does it matter?
Long Covid
- Thread starter zahir
- Start date
If there is no way of distinguishing between a psychosomatic (but by no means "not real") and "physical" problem, then there is no way of saying how many fit in either camp. Sorry.
Why does it matter?
Brainaddict
slight system overdrive
In this particular case of post-viral conditions it matters because the 'it's in your head' mob who have dominated in medical science have helped create a situation in which people get dismissed by the GPs and in which no-one has felt comfortable investing large amounts of money in investigating the possible physical processes involved. Why are you talking like everyone just objectively decides how people should be treated based on rational criteria, and that research money rationally goes to the right places? You know that's not true.
Meanwhile even if you are on a (perhaps righteous) mission to get people with psychosomatic conditions treated as seriously as people with physical conditions, (a) you need to start with medical professionals, not randoms on the internet and (b) I re-iterate my point: best not to make claims that you can't back up with evidence.
In people who have no measurable abnormality, what evidence is there that they don't have a somatization disorder (as that is how those disorders tend to be defined)?
And I am as entitled to discuss this on here as anyone else, so stop policing.
Brainaddict
slight system overdrive
There isn't evidence either way. Both lines of possibility need to be investigated. What you said was an unevidenced assertion that there would be a large group of people who would fall into one camp. You can call it policing if you like but let me say it plainer: you're kind of being a dick here. After months of chest pain I was told by doctor to just not think about it - because nothing showed up in the x-ray. Many people on this thread have similar stories. So (a) this is the wrong thread for this discussion and (b) you still haven't admitted you made an unevidenced assertion. I won't post more on this but I suggest you take whatever conversation you want to have on it to another thread.
ska invita
back on the other side
Had exactly the same - I think im back to (shit) normal now finally after a week or so. Im hopeful for you that its temporaryThe AZ vaccine has really knocked me back unfortunately. A week on and I still feel exhausted and a bit hazyI've had to go to bed in the afternoon a couple of times, which I haven't had to do since the niacin kicked in last year. I'm just hoping it's temporary.
Just had a GP phone appointment.
He said yeah you can go on a three month wait for long covid clinic but tbh i can do what they do... i'm happy with that. I wont bother, and will leave it for those in more need.
Interestingly he said he is seeing most longer covid cases with men in late 30s and early 40s particularly who do a lot of exercise, "bike riders and such" - i was actually riding a bike when i first got symptoms! but this doesnt seem to match the national picture. Anyway....
He has prescribed another 5 day course of steroids - I'm up for that - my friend who has ongoing black mould-created breathing problems says he usually gets prescribed a 10 day course anyway, and they did do something for me.
Has also prescribed a different behind the counter prescription-only antihistamine. Normal shop ones are h1 inhibitors, these are h2! Thats one more!
So I will be taking both H1 and H2. Supposedly its an expensive medicine for the NHS to source, but the cheaper one they normally prescribe is currently being reviewed for safety reasons. Will report back once ive picked it up and started taking it.
The being-prone-to-histamine relation with long covid really matches up with my general long term condition, so Im hopeful this new drug will do something. Theres a thing called the Atopic March and I exhibit that in a near text book fashion, having had asthma, allergies to dairy, hayfever, and so on - no eczema though
Also am having a blood test just in case theres anything to be gleaned
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Brainaddict
slight system overdrive
That's interesting, one of Gez Medinger's recommendations from his surveys was a combination of H1 and H2 antihistamines. I'm one of the people antihistamines didn't do much for. But it's also hard for me to take them because they make me so sleepy (yes, the 'non-drowsy' ones), so I didn't take them for long. Taking something that sends me to sleep in order to cure fatigue was a bit of a non-starter.
ska invita
back on the other side
yeah that makes sense - my mum takes a piriton as a sleeping tablet! luckily they dont have that effect on me
Brainaddict
slight system overdrive
I think there's something still to come out here. I am a fairly fit cyclist and walker, and of the two other people I know who have had bad long covid, one man, one woman, the man was also a fit cyclist. The national stats don't seem to bear it out at the moment but I wonder if there's some way in which it's being concealed by the stats collection process. I'm not sure it's cycling per se as that fit men in that age range are often fit through cycling. Or maybe we're all statistical anomalies. Time will tell hopefully.
Edit: thinking about it, I can imagine a way in which it might be about cycling specifically. It gets you fit but doesn't increase your lung capacity as much as running or gym does as the aerobic stress isn't as high. So maybe there's something about being fit but not with great lung capacity. But that's pure speculation.
Yes. Brilliant post. I think there’s so much unintended stigmatisation of mental illness by those that defend against all possibility that illnesses like long covid have a psychiatric/psychological component.
The truth is we now know that the immune system and the endocrine system are intimately connected to our minds. There’s loads of great neuroscience to show this now. And the connection is bidirectional. Physical illness is linked to mental illness (look at the association between inflammation post MI or stroke and depression for example). And just as true is that mental illness is linked to physical illness (the role of cortisol in depression and its link with fatigue to just give one example among so many!).
We need to move past conceptualising illness as either ‘physical’ or ‘mental’. The separation of mental illness from physical illness with respect to physical hospitals right down to separate NHS trusts needs to stop. Why is neurology separate from psychiatry? And a greater understanding of the mind as not being separate but part of the body needs to be developed. Symptoms like fatigue and brain fog will have multifaceted causes and none of them should be stigmatised and excluded, and that starts with believing patients not just investigations.
There is no way currently of distinguishing between the two. I don't think it matters. I agree that both lines of enquiry need to be researched to find treatments that work.
There is a "large group" because a huge number of people have the label "long covid", so whether the somatization-group is proportionally minor or major it will have a lot of people in it.
I'm not attacking you.
ska invita
back on the other side
so_squalid
Well-Known Member
I post as a desperately worried partner of someone with long covid for a year now. Nothing has helped; anti-histamines, “the stack” (niacin etc), respiratory physio, herbalism, acupuncture, therapy, antidepressants... Perhaps this grasping for fixes isn’t helping and the truth is that the body will recover when it does. I don’t know. I just hope we make it to that recovery.
so_squalid
Well-Known Member
A neighbour suffering from long covid wrote this which I think is pretty fucking cool, although I do cry every time I read it The Stillness Shall Be the Dancing — Caroline Mary Williams
ska invita
back on the other side
Im increasingly finding there is only one thing that has a noticeable effect (other than steroids!) and that's light exercise, be it breathing exercises (qi gong & yoga), or better still going for a walk. The one thing I've found is if my heartrate goes up too much that can have that 'set back' effect of making me feel worse later on, so i'm keeping it gentle, but trying to go for as long as possible without getting to a tired state.
Doing this everyday feels accumulative, and if I miss out even one day - like i did yesterday - I really notice it.
Doing this everyday feels accumulative, and if I miss out even one day - like i did yesterday - I really notice it.
ska invita
back on the other side
following on from this post...ive woken up with an idea to buy an oxygen canister.
i think the reason exercise/breathing actions have a positive effect is that its providing a hit of extra oxygen to my system
im not even sure how im aware that such things exist, but its possible to buy oxygen canisters that provide a hit of extra oxygen
looking on a couple of websites they suggest it can help with fatigue and muscle cramps and shortness of breath <my three most common symptoms
im going to take a punt on one and see
a quick look this seems to me the "cheapest"
15L Oxygen Can with inhaler cap - ClearO2
www.clearo2.com
<<feel free to tell me Im an idiot - im going to try it anyway, just in case - but happy to hear if people think this isnt a good idea for whatever reason
elbows
Well-Known Member
I found the following article interesting and depressing. Its not directly to do with long covid, but it strongly hints at some of the underlying attitudes that may lead to poor attitudes from some healthcare professionals.
The disabled doctors not believed by their colleagues
People often feel nervous when they visit a doctor, but what if you are a doctor but your colleagues don't believe you're ill?
www.bbc.co.uk
Miss-Shelf
I'll meet you further on up the road
I hope your partner sees some respite soon and I hope you get some support as well - it's obviously going to have had a difficult impact on your life
two sheds
Least noticed poster 2007
I think you should talk to doctor about it, I'm not sure it's a good idea unless prescribed. Also about shortness of breath? Might an inhaler help?following on from this post...ive woken up with an idea to buy an oxygen canister.
i think the reason exercise/breathing actions have a positive effect is that its providing a hit of extra oxygen to my system
im not even sure how im aware that such things exist, but its possible to buy oxygen canisters that provide a hit of extra oxygen
looking on a couple of websites they suggest it can help with fatigue and muscle cramps and shortness of breath <my three most common symptoms
im going to take a punt on one and see
a quick look this seems to me the "cheapest"
15L Oxygen Can with inhaler cap - ClearO2
<<feel free to tell me Im an idiot - im going to try it anyway, just in case - but happy to hear if people think this isnt a good idea for whatever reason
ska invita
back on the other side
ive got hold of an inhaler since getting covid and ive had to break it out a couple of times, but it basically doesnt work like it does with asthma - hard to tell really. interesting about brown inhaler though as ive got the blue one...ive never used the brown, will look into that.
re oxygen cans: i guess you're right about "checking with a doctor" in theory, but this is very small use, sports people use this all the time - its only a couple of expensive puffs here and there. if anything reading about its more of a case of "this doesnt do anything, waste of money", rather than it potentially being dangerous. in scale its a way off proper "oxygen therapy" like with those machines and breathing masks
im not worried
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two sheds
Least noticed poster 2007
Brown one is steroid preventer, blue one is reliever. Yes the blue one doesn't seem to work for me like it did, the steroid preventer does make a real difference to me. As you say, mine is asthma though. (the brown inhaler didn't work for me but other steroid inhalers like seretide and fostair really do). I'd avoid anything with a powder - when I tried one I felt like I was choking at night when I lay down.
What I've recently started taking that someone on urban pointed me to was Montelukast - it's a pill you take in the evening and (again for me with asthma) I felt real benefit the next day - it virtually stopped my coughing and mucus building up in lungs.
With relatively quick questions I've started arranging phone appointment with doctor - works really well, I write up the things I want to check with her and she's great at answering on phone. (Only thing that's difficult is like last phone conversation we had I told her about a lump that seemed to be developing on the side of my face, she obviously say anything but asked me to send a photograph. I wasn't that bothered so I didn't and it's gone down anyway now that I've stopped poking it
)
Good luck anyway.
What I've recently started taking that someone on urban pointed me to was Montelukast - it's a pill you take in the evening and (again for me with asthma) I felt real benefit the next day - it virtually stopped my coughing and mucus building up in lungs.
With relatively quick questions I've started arranging phone appointment with doctor - works really well, I write up the things I want to check with her and she's great at answering on phone. (Only thing that's difficult is like last phone conversation we had I told her about a lump that seemed to be developing on the side of my face, she obviously say anything but asked me to send a photograph. I wasn't that bothered so I didn't and it's gone down anyway now that I've stopped poking it
)Good luck anyway.
Oula
Voice of a Goddess Giant
I've got a phone appointment for Thursday. I'm still not sure if anything can be done and feel like my issues aren't as serious as other people's but they are getting me down. I'm basically in pain all the time. My dad said it sounded like arthritis and I had a look and apparently they are starting to see cases of people getting arthritis from Covid. Also "covid toes" are a thing. Anyway, I guess it's worth looking at. It sucks for it to be painful to walk and type.
two sheds
Least noticed poster 2007
If you're in pain all the time I wouldn't be concerned that your issues aren't as serious as other people's. It's also important to keep doctors informed of symptoms and hopefully find out how they can be alleviated for everyone concerned.
Good luck with the interview - worth getting all your notes sorted for it.
Good luck with the interview - worth getting all your notes sorted for it.
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ruffneck23
front left
Since Thursday my shoulder has been painful as in a nervy type pain , its now spread down to my forearm , no amount of pain killers seems to be helping. I had my 1st AS jab at easter. I didnt connect the 2 until you posted this. Please let us know how you get on.
ska invita
back on the other side
this arrived today and i have to say i love itfollowing on from this post...ive woken up with an idea to buy an oxygen canister.
i think the reason exercise/breathing actions have a positive effect is that its providing a hit of extra oxygen to my system
im not even sure how im aware that such things exist, but its possible to buy oxygen canisters that provide a hit of extra oxygen
looking on a couple of websites they suggest it can help with fatigue and muscle cramps and shortness of breath <my three most common symptoms
im going to take a punt on one and see
a quick look this seems to me the "cheapest"
15L Oxygen Can with inhaler cap - ClearO2
<<feel free to tell me Im an idiot - im going to try it anyway, just in case - but happy to hear if people think this isnt a good idea for whatever reason
it says to have 8-10 lugs at a time...I had 8 and although it doesn't immediately feel like anything is happening - there's no hit as such - quickly afterwards I felt as if parts of my lungs that haven't been receiving air (im sure that's not how it works, but that's how it feels) were getting oxygen. It feels really really good.
Went for a walk, came back slightly out of breath, a couple more lugs and again the best way to describe it is that my lungs feel like all parts of them are working, and that general ongoing feeling of not-enough-air feels significantly satiated for now.
I dont know what now. £17 buys you 100 lugs in that can in the link - at ten a day thats £1.70 a day, but its not cheap to keep up. And its possible later in the evening I'll feel like having a couple more breaths.
i'll see how it goes for a few more days and report back.
yes interested to know how it goes.
Oula
Voice of a Goddess Giant
How is everyone doing?
ska invita is the oxygen still helping?
I'm having blood tests to see if my joint pain is reactive arthritis (from Covid) or rheumatoid arthritis (possibly triggered by Covid). A friend who has RA gave me loads of good advice about trying to restore an immune system that's in an overreacting panic. I had quite a bad infection (cellulitis and an abscess) directly before having Covid so my immune system has had to work hard and taken quite a beating. He gave me loads of info that I found quite reassuring and empowering which basically boiled down to really focussing on looking after myself. Drinking more water. Sleeping more. Resting more. Cutting out alcohol, caffeine and sugar for three months and avoiding other stimulating things like chillies.
ska invita is the oxygen still helping?
I'm having blood tests to see if my joint pain is reactive arthritis (from Covid) or rheumatoid arthritis (possibly triggered by Covid). A friend who has RA gave me loads of good advice about trying to restore an immune system that's in an overreacting panic. I had quite a bad infection (cellulitis and an abscess) directly before having Covid so my immune system has had to work hard and taken quite a beating. He gave me loads of info that I found quite reassuring and empowering which basically boiled down to really focussing on looking after myself. Drinking more water. Sleeping more. Resting more. Cutting out alcohol, caffeine and sugar for three months and avoiding other stimulating things like chillies.
ska invita
back on the other side
Really interesting ... that's basically what ive been doing instinctually as best i can I think. Despite having the notion to want to drink socially I feel almost allergic to alcohol... not had a drink all year as good as (had one and didnt enjoy it). I often get a cotton mouth, going to try and drink more (gassy) water as you suggest.
I've got a CBD oil before bed routine going that's really helping me with my quality of sleep - makes me fall asleep easily and then sleep deeply and dream deeply, even whilst taking steroids which kept me awake last time. I really recommend that as a positive thing to do - as well as the sleep it just feels right as part of the calming of the nervous (and immune?) system thing.
Also managing to keep up a 1hr a day walk regime which feels essential. I crave oxygen.
In general I find I breathe better if I am standing, or moving, and better still if I am outdoors.
I've got the windows open wide constantly at home even if it is cool. I can feel my breathing slowly restrict if I sit at a desk infront of a computer for too long. Trying not to hunch. Trying not to sit or lie down for too long.
All that is possible because I'm still working from home, and that WFH isn't very full on either. That time and space feels essential. As soon as I have a stressy day I immediately feel my breathing restrict.
I tried to go into work twice since last posting here - just went in at a time that suited me, and once there tried not to work too hard, and both times after a couple of hours it triggered what i can only describe as a mild asthma attack. Basically out of breath to the point of needing to go home. Both times felt massively disappointing as I'm not having that strong a reaction at home, even after doing mild exercise. Reasons for that might be pollution / all-day mask wearing / stress / allergic to work!
Went back to GP and got a second prescription of steroids -these really do work for me. Just finished the second course a couple of days ago and I feel like i have increased use of a big section of my upper lungs. Last time this feeling faded, but Im hopeful it wont this time.
I also got prescribed a brown asthma inhaler (already have a blue). Not used it enough to tell what its doing if anything.
Perhaps the H1 and H2 antihistamine regime is helping me too. It might well be.
But to go back to the oxygen can, that first days use felt significant, but since then its had no effect that i can discern, so i wont be buying it again. This may partly be as the next day i had that work-asthma attack which lingered, or it may be that it was always going to be a long shot.
In conclusion I feel like I'm doing better and am hopeful again. I do have a good routine going: sleeping on time and waking at a regular time (helped by CBD oil), outdoor daily walk or excursion, maximising fresh air in general. Limiting all stresses as best as possible. Keeping life as simple as possible, and have lost all Fear Of Missing Out - just happy to chill and recover.
And last thing is to say, for me this is now all about breathing - no other separate symptoms anymore really - if i get dizzy its because of a shortness of breath etc. So I'm thinking a lot about my breathing, as well as doing exercise etc. Breathing shouldn't be forced and it should happen instinctively. The diaphragm needs to expand as fully as possible - the belly should rise out. Its the top third of my lungs that feel like they aren't getting the air they need...makes me think about my upper chest muscles and try to make sure my breathing is deep, without straining.
etc etc waffle, post has got long.... I hope thats of some interest! best wishes to everyone
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