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Long Covid

Oula said:
And then I got a bit drunk last night and my hands really hurt again today. :(
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Have you looked up the low histamine food list recommended online? Might be useful idk. Booze seems pretty rubbish for long covid symptoms unfortunately. I have totally stopped drinking tbh... just had no desire to. Have you tried any antihistamines daily btw?

Glad youre in less pain but I think once things start improving it still takes a while to stabilize.. so keep doing what youre doing for weeks/months to let your body recover more.
 
Riklet said:
Have you looked up the low histamine food list recommended online? Might be useful idk. Booze seems pretty rubbish for long covid symptoms unfortunately. I have totally stopped drinking tbh... just had no desire to. Have you tried any antihistamines daily btw?

Glad youre in less pain but I think once things start improving it still takes a while to stabilize.. so keep doing what youre doing for weeks/months to let your body recover more.
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Thanks, I'll check that list out. I've realised that the last three times I've had more than one glass of red wine my hands have been really bad the next day. My dad always tells me red wine is good for reducing inflammation but I'm never sure whether to believe him.

I've never taken antihistamines.

I think tiredness is the thing that has most negative effect on my symptoms and I know alcohol messes up my sleep. I didn't drink at all when I had covid and for a bit afterwards and I'm still trying to not drink too much, mainly so it doesn't mess up my sleep.
 
I am doing way better than a lot of people with long covid and I'm still barely drinking because it has such a horrible effect on me. It sucks, I never drank much but I miss having a beer to relax in the evening or a couple when out. But two beers and I wake up feeling like I've drunk 10. Even one 330ml can I don't feel very good the next day.
 
This is a good histamine food and drink list. Might be useful. It's not to be taken as 100% cos things vary, people vary etc but it gives a general idea.

Basically avoid things that are 2/3 for a few weeks and see if that helps. Some things aren't high in histamine but mess up other processes linked to histamines... these have A and L tags on them basically. Ive found this has helped a lot but I take it as a guide rather than gospel... some eggs and chickpeas for me are fine for example.
 
We've been having quite a few non-alcoholic beers in the sunny evening which works alright. Luckily she has never enjoyed drinking that much so quite happy with that as an alternative. We were debating if she was ready to trip this week and then her period has caused a wobble in symptoms so think that's off the agenda. No major changes - raving a long way off.
 
Edie said:
Interesting article on post viral fatigue being an immune disease, possibly an oestrogen-associated autoimmune disease. And explaining the sex bias, especially that of young and middle age women, due to women’s immune systems being extra reactive during child bearing years.

www.theguardian.com

Why are women more prone to long Covid?

While men over 50 tend to suffer the most acute symptoms of coronavirus, women who get long Covid outnumber men by as much as four to one
www.theguardian.com www.theguardian.com
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....article suggests taking steroids. ive had two courses...they did do something certainly at the time, hard to tell what any long term effect is.
id be up for taking more courses once in a while, just in case.

ive hit 6 months now and happy to say the last two weeks have been the best so far. yes occasional dips and fade outs, but ive been back to normal at times even (sort of). that said i hit a wall and am on day two of a slump right now, but still feels like big progress. ive overdone it a bit i think is why. the possibility of this ending seems real now.
vax 2 incoming today, curious to see if that makes any difference.

I still think the best thing ive been able to do is daily exercise - as much as possible without getting shattered, whatever that means. forcing myself out as much as possible, whatever the weather too. getting some muscle strength back feels great, but above all i think its about tricking the body into thinking that it is healthy and capable of functioning well without having to do its auto-immune crap.
 
ska invita said:
ive hit 6 months now and happy to say the last two weeks have been the best so far. yes occasional dips and fade outs, but ive been back to normal at times even (sort of). that said i hit a wall and am on day two of a slump right now, but still feels like big progress. ive overdone it a bit i think is why. the possibility of this ending seems real now.
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This is exactly where I am too.

ska invita said:
I still think the best thing ive been able to do is daily exercise - as much as possible without getting shattered, whatever that means. forcing myself out as much as possible, whatever the weather too. getting some muscle strength back feels great, but above all i think its about tricking the body into thinking that it is healthy and capable of functioning well without having to do its auto-immune crap.
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I've just had a phone consultation with a physio that my GP organised about it. Happy to share what he said if that's useful (but later as I should be working)
 
Sorry for the delay.

Obviously this is specific to me, so may not apply to everyone. My main long Covid symptoms are joint pain, general muscle ache and fatigue. I walk and swim regularly. I tried a more intense exercise program but it made my joints hurt too much so I stopped it and got quite down.

A summary of what the physio said:

We are seeing lots of ups and downs during slow and graded recovery. We would expect a general direction of recovery with some turbulence on the way. Try not to get upset at set backs, although that is easier said than done.

Modify exercises to reduce impact.

Leave a few days recovery time between each exercise activity.

Start of with adding one exercise session a week. Pace yourself.

Don't change too many variables in one go. When you add another session keep the intensity and length of the original session the same. Change only one thing at a time so the body can accommodate.

Leave three weeks before adding in another session.

Some discomfort does not mean damage. An activity that is demanding and a bit uncomfortable is ok but the discomfort should stop when the activity stops. If you still feel discomfort the next day, you are doing too much.
 
I was also talking to a dad on the school run who had Covid at the same time as me and has had bad long Covid. He has tinnitus, brain fog and headaches. It was so useful for both of us to talk to someone else in the flesh who is struggling with it - I've only spoken to people on here about it before. He was about to go to a long covd support group organised by his work. I'll be interested to find out from him how that went.
 
Yes, though I think you might need to be referred so an idiot GP could still stand in the way of getting to the clinic. I think it's also really useful to just develop expertise in one place as well. For instance my GP didn't seem to know that covid lung damage often doesn't show up in x-rays, and I've seen other people on long covid groups being sent for x-ray after x-ray and then told there's nothing wrong with their lungs - when they have to deal with them aching every day. GPs often aren't up on the latest research like this Hidden damage to lungs from Covid-19 revealed in new study from University of Sheffield
 
Brainaddict said:
Yes, though I think you might need to be referred so an idiot GP could still stand in the way of getting to the clinic. I think it's also really useful to just develop expertise in one place as well. For instance my GP didn't seem to know that covid lung damage often doesn't show up in x-rays, and I've seen other people on long covid groups being sent for x-ray after x-ray and then told there's nothing wrong with their lungs - when they have to deal with them aching every day. GPs often aren't up on the latest research like this Hidden damage to lungs from Covid-19 revealed in new study from University of Sheffield
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My partner was checked out and was told there was nothing wrong and is worried it's another health condition. This is interesting. Thank you
 
UnderAnOpenSky said:
My partner was checked out and was told there was nothing wrong and is worried it's another health condition. This is interesting. Thank you
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No worries. Frustratingly a problem with covid and x-rays was identified fairly near the beginning of the pandemic - x-rays coming back clear even with patients ill enough to be in hospital. This doesn't seem to have fed through into how doctors think about x-rays in relation to long covid. If you go on long covid forums you'll find that loads of people (particularly who haven't been in ICU for their illness) get clear x-rays despite chest pains and breathing difficulties, but I can't find any studies on it yet.
 
My joint pain and general ache are much worse again. Especially my hands. Back to how they were over a month ago.
It's my period, which always seems to make them worse. Also I was away at the weekend and had a very active time. Probably overdid it a bit. Also didn't eat that well and drank more than usual. So I'm probably paying for that a bit. I'm less down about it as they have been much better in between so I believe they can be better again. Also, I mind less if they're worse after having an unusual weekend than just not being able to manage everyday life, if that makes sense.
 
I wonder if my son has long Covid. He's always complains of being tired. It's hard to tell if it's from the disruption of being off school for so long and then trying to get back to normal activity or if its long Covid.
 
Oula said:
My hands are still fucked and it's starting to get me down again.
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Are you trying one thing at once to sort of narrow what helps down a bit? Obviously lots of good sleep, rest, good diet, positive mood/low stress is ideal. Anti-histamines, low histamine diet, less alcohol, probiotics.... might be worth a shot. Is your GP supportive?

An update - Sooo my progress is good still. I am back to being more active and going for walks, I can even do fairly intense stuff some days, like I had the desire to climb up the 200m hill behind my house. It's a bit of a balance between being active and not overdoing it though - I haven't been getting bad PEM or relapses but I do feel it the next day. Next step is to get by bike back and do some cycling rather than walking 1.5 miles back to my parents' house or to the canal etc. I often get the bus back as it's only 5 mins and a few stops, but not super comfortable with this at the moment (I am wearing a proper FFP2 mask now not the shit ones). I actually went on a date in a pub garden fairly closeby too... was good! Although I do feel quite awkward still because I have to stop when walking and I get these involuntary facial movements/eye twitches/red psoriasis rash on my neck and shoulders, can´t drink alcohol and don´t last for that long socialising... I was worn out after 2 hours.

My therapy is still really helpful - I have no idea why some people with long covid/CFS are so resistant to psychological support, I think it's a huge element of the illness... good video by yer man Medinger about this recently actually. Would be great if this was more on offer. I had my long covid phone appointment too which was helpful, they have put me into a 6 person long-covid support group which has fortnightly 2h (!!) online meetings, I´ve got a load of drossy forms and homework to do for it. Trying to be positive and give it a go!
 
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so_squalid said:
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
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That poem... pretty much has been my life since a diagnosis pf polymiositis and autoummune hepatitis. Both caused by my immune response to viruses.
It's a rough way to live.
You appreciate the very small things you can do.
The gathering of energy for a trip to see a friend.
The uncertainty as to whether you'll feel up to whatever...
Basically you really learn to live each day as it comes. Planning goes out the window.

existentialist said:
We're turning into a medieval society.
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Absolutely. What gets me is the interviewer's complete arrogance.
It's as if we now live in a world where all opinions are deemed equal.
It's really very worrying.
 
sorry if been posted here already but quite informative paper here, collected studies.
It's not exactly good news apart from the bit about being vaccinated reducing your chances, if infected, of getting the long kind. Which of course leaves out the young.

institute.global

The Hidden Pandemic: Long Covid

The Hidden Pandemic: Long Covid
institute.global
 
Theres one bit in this
www.bbc.co.uk

Long Covid: Will I ever get better?

The BBC's Lucy Adams wants to know what long Covid actually is and how to make it go away.
www.bbc.co.uk
that really caught my eye:

But it wasn't until April this year when I met neuropsychiatrist Prof Alan Carson at Edinburgh University that I understood that I had it [Breathing pattern disorder] too.
The good news is that it is reversible and explains the sensation of fizzing I've had in my veins for months which he says is down to excessive carbon dioxide changing the PH levels in my blood.
The bad news is that it took more than a year to get it diagnosed and I am still waiting for the respiratory tests he has referred me for.
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I've still got "fizzing" in my legs, and my breathing patterns are disordered I think...I dont feel like the breaths are as regular as they should be unless I really concentrate on it - in fact walking (mild exercise) has the effect of making the breathing regulated, which might be why ti feels so good to me.

The " excessive carbon dioxide " bit makes me wonder what i can do.
Many people with long Covid have breathing pattern disorder or hyperventilation syndrome. It is one of the things physiotherapists can help to change.
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Id like to know more about this....


ETA: this relates back directly to the "retrain your diaphragm" thing that was mentioned a few pages back
 
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