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Long Covid

I feel like that also applies to how lots of people are feeling generally, especially post-Covid/lockdown, the changes that have happened, and the uncertainty around in the world.
 
pbsmooth said:
I feel like that also applies to how lots of people are feeling generally, especially post-Covid/lockdown, the changes that have happened, and the uncertainty around in the world.
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I think that's quite a minimising thing to say. A physically debilitating condition that destroys your quality of life through preventing you living much of the life you once lived, while medics constantly gaslight or ignore you, is a quite different thing from what most people have been experiencing as a result of the pandemic.
 
Brainaddict said:
I think that's quite a minimising thing to say. A physically debilitating condition that destroys your quality of life through preventing you living much of the life you once lived, while medics constantly gaslight or ignore you, is a quite different thing from what most people have been experiencing as a result of the pandemic
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I guess it shows how broad the poster is. Covers so many issues that many people are experiencing and are indeed debilitating to them too whether you like it or not.
 
danny la rouge said:
Line manager wants to speak to me on Friday. I might send her that poster beforehand. It’s only a matter of time before I get invalided out though.
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Fingers crossed for you, it might not be that bad. Even long covided you can be a great reliable straight up asset to work with. if its stressing you it can make the symptoms worse, try to step back from the pressure. in the end supporting someone can be a lot easier for a company than hiring and training someone.

My work are being quite accommodating to my current fatigue so ive been WFH pretty much the past 3 weeks since I had covid. feeling a bit more human now, had some bimbles in the sun and a ride on my bike. lots of rest too.

That poster is also definitely me btw. But that doesnt mean things dont improve. in the end the biggest boost is feeling like youre able to live a functional life with joy in the present moment, whatever it was like before.

not aimed at you danny or anyone really but controversial opinion here but this is the great benefit of CBT or other spoken therapy, getting out of the mindset of regret, comparing yourself to the past or rehashing the past or analysing your past choices as a key part of recovery. that poster doesnt to me show the importance of challenging those thoughts which we all have in such a horrible situation. However crap the medical profession are with chronic illness they are not wrong here. Mind and matter are intertwined. chronic illness is not just something happening to you. that guy Paul Garner seemed like a wanker with his views but over time they have helped me partially on my own (long) journey.
 
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danny la rouge said:
Thanks that would be extremely useful.
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Just to start by saying most of my symptoms are about fatigue and brain fog. I don't have a lot of experience of bowel symptoms and pain, which are kind of other clusters of symptoms that I don't get. Having said that:

1. PACING Option number one is pacing, which means in the end you'll be planning every day to stay within your energy budget. There are online resources for this, At the moderate end of this you'll just be saying, since I went out already today, I can't go out this evening. For other people they'll need to be calculating if they have enough energy for cleaning the house. But my top tip here is that TOTAL REST is very valuable during the day. So you take total breaks of 10-30mins maybe a couple of times in the day. Ideally in a quiet dark room on a bed, but at least leaning back in a comfy chair somewhere with your eyes closed doing absolutely nothing. Doing this a few times through the day will increase what you're capable of doing (I know some work environments make it very hard but you can at least do it when you come home first thing). The other thing that helps is regular task-switching, particularly between intellectual and manual tasks.

2. ANTIHISTAMINES The most common easily available drug that seems to help is antihistamines - it brings down inflamation and reduces the tense exhaustion you feel. Loratadine (an H1) is fine to start with, though a mixture of H1 and H2 antihistamines are supposed to be better. You need to be prescribed an H2 but good luck with that until the current medical trial on it is finished. If Loratadine makes you sleepy just take it at night, you'll still get the effects.

3. ANTICOAGULANTS Many people with long covid find an anti-coagulant helps. I was taking turmeric for a long time (in capsules). Now I am taking two enzymes called nattokinase and serrapeptase (Doctor's Best brand) and I think they are better for me, though they required some management to avoid insomnia.

4. ENERGY SUPPLEMENTS People take a variety of things that mostly intervene in cell energy production cycles. I take high-dose Niacin (the flushing variety) which is very common. I also take acetyl l carnitine, which seems to clear my brain fog a bit. A lot of people have had luck with D-Ribose or NAC or CoQ10. As far as I can tell they just intervene in a slightly different place in cell energy production cycles but for some reason we don't understand different things work for different people so you have to play around. Some people just take a high-dose vitamin B combo but it didn't do much for me.

5. MEDITATION If you are getting a tense exhaustion over the course of the day meditation can help, preferably a couple of times a day. But I think you may do this anyway. I would still recommend periods of TOTAL REST besides the meditation.

6. SSRIs - a lot of people with LC have success with them - it is thought that they do more than just lift mood (which can help tbh) but they also have anti-inflammatory effects. (e2a this line)


Option X: Hardcore option of taking Low Dose Naltrexone, which you'll likely have to obtain in nefarious ways and self-administer, and is quite a full-on thing to manage. But it can create a step change in your ability to get things done and is one of the few things that people with ME-CFS say works with any regularity.
 
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I take herbal medicine I get prescribed via a chinese medicine specialist and that helps a lot. my symptoms were unusual so they actually used me as a case study for a major global chinese medicine convention with some v experienced people, then recommended that as my main treatment, so it isnt just being made up by some rando. It isnt that expensive but it isnt free. Anything that works for you and gets you through this and helps you heal and rest and recover I think is great.

I also found being on sertraline (for 2 years) really helpful and I have no doubt that low mood and depression and anxiety and poor sleep were the main thing I had to overcome to start healing. I was also on zolpidem for 6 months when I was in a bad way and not sleeping which is not recommended but worked for me. I came off it fine when I got stronger.

I swear by chamomile tea. It really helps me sleep and rest and with my twitching weird movement symptoms.
 
Riklet said:
I take herbal medicine I get prescribed via a chinese medicine specialist and that helps a lot. my symptoms were unusual so they actually used me as a case study for a major global chinese medicine convention with some v experienced people, then recommended that as my main treatment, so it isnt just being made up by some rando. It isnt that expensive but it isnt free. Anything that works for you and gets you through this and helps you heal and rest and recover I think is great.

I also found being on sertraline (for 2 years) really helpful and I have no doubt that low mood and depression and anxiety and poor sleep were the main thing I had to overcome to start healing. I was also on zolpidem for 6 months when I was in a bad way and not sleeping which is not recommended but worked for me. I came off it fine when I got stronger.

I swear by chamomile tea. It really helps me sleep and rest and with my twitching weird movement symptoms.
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I could have mentioned anti-depressants actually, which isn't just that people get low from LC, though obviously they do. From someone I know who has researched it more than me:
There is actually evidence of SSRIs helping with Covid and long covid, and with depression in LC (prior to effect timeline for standard depression), likely because of anti-inflammatory effect on some of the immune markers linked to LC.
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There is also a hypothesis that one SSRI with a different action to others, Fluvoxamine, is particularly worth trying, but I believe it's not easy to get prescribed it and you might have better luck just getting a standard SSRI out of your GP: Fluvoxamine and long COVID-19; a new role for sigma-1 receptor (S1R) agonists - Molecular Psychiatry
 
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My partner found Sertraline really helped with her pain from ME/CFS. She had to stop and her crashes around her period were unmangable so she now takes her pill consecutively which has really helped. Still largely housebound though.

We're two years in at the moment. Tempted to try CQ-10 as heard that some people has found that helped.
 
Brainaddict said:
I could have mentioned anti-depressants actually, which isn't just that people get low from LC, though obviously they do. From someone I know who has researched it more than me:

There is also a hypothesis that one SSRI with a different action to others, Fluvoxamine, is particularly worth trying, but I believe it's not easy to get prescribed it and you might have better luck just getting a standard SSRI out of your GP: Fluvoxamine and long COVID-19; a new role for sigma-1 receptor (S1R) agonists - Molecular Psychiatry
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I’m already on fluoxetine, so there’s that.
 
I was talking to a friend and he was telling me that a mutual acquaintance (someone he knows better than I do) has long Covid and is going to Germany (she has a German parent) for a full body blood transfusion, paid for privately but which her work is contributing towards (sounds a great employer!).

I would like some more information about this procedure. Is it effective? What are the studies? Where can I read reliable stuff about it?

I’ve tried web searches, but I’m hoping people “in the LC community” have good info they’d like to share.
 
danny la rouge said:
I was talking to a friend and he was telling me that a mutual acquaintance (someone he knows better than I do) has long Covid and is going to Germany (she has a German parent) for a full body blood transfusion, paid for privately but which her work is contributing towards (sounds a great employer!).

I would like some more information about this procedure. Is it effective? What are the studies? Where can I read reliable stuff about it?

I’ve tried web searches, but I’m hoping people “in the LC community” have good info they’d like to share.
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Sounds like HELP apheresis. Establishment view of it here Long covid patients travel abroad for expensive and experimental “blood washing”

I've not got a view on it myself, except that it's a lot of money for uncertain results. Gez Medinger, whose channel I watch regularly for new ideas, did a video on it:
 
Yes hyperbaric oxygen was another thing he mentioned. I’d forgotten that.

I’ve not got the money sloshing around, but if I did I’d consider anything to be honest.
 
My brother and a friend have both tried HBOT, they think they see mild improvements but it seems to be a bit marginal.

If there was something I knew would work I'd give all the money I have and borrow more beyond that. But while people are still speculating I'll stick with trying the cheap stuff. The most expensive thing I tried was Low Dose Naltrexone - cost me about £100 to get it.

On the list to try is Mestinon, which is available as a cheap generic from India and is meant to stimulate the autonomic nervous system/improve blood circulation. The issue with that is it has some side effects. But a few people have had very good results. Some tests happening Mestinon Moves the Needle on ME/CFS in Exercise Study - Health Rising
 
Couple of months off work in a warm place getting lots of sunshine and rest and gentle physical activity in managed doses (if your body wants that) is a tried and tested treatment. I basically did that last year and just did some English teaching part time. I am lucky I had the money and could rent a room with a friend in Portugal. It did me the world of good and frankly is a lot cheaper an option than paying some private clinic for miracle cures. But obviously not possible for many people, understandably.

I think the key thing is that recovery is not a linear progression with chronic illness. You do not just feel better and better and then become better 99% of the time. Even with these blood filtering trials etc it may take months to see long term results. Thats one of the big issues with treating post viral and chronic fatigue generally I guess.

And personally I think as soon as you get too overfocused on how you were and not how you are you waste a lot of energy that could be better spent. There is only now. This is why I left all long covid support groups and anything to do with long covid tbh aside from this thread, for me that is part of my recovering disconnecting from the "oh no im ill and will be forever" mindset. And this is easier said than done, as I am finding with my current fatigue relapse linked to covid again in January. It is quite frustrating. But I try and just be accepting of how I am now and not fight too much. In 50 years when I am old i will be better and I will look back and smile.
 
Riklet said:
Couple of months off work in a warm place getting lots of sunshine and rest and gentle physical activity in managed doses (if your body wants that) is a tried and tested treatment.
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I call this the Victorian Cure. Not in a derogatory way. The Victorians were right. You can fix a lot of things by sending someone to the sunny seaside to relax for three months. It is certainly the best treatment (if you can afford it) for post-viral conditions, which for sure existed then as they do now. Every time I manage to rest properly for a while I get a step change improvement.
 
Victorians werent wrong about everything!

Ive discussed with work the possibility of going part time if my fatigue doesnt improve in the next few weeks. they are suggesting I work from home 3 times a week rather than 2. slept badly and feel crap today so didnt feel safe to drive at all tbh. I got a bit cold out cycling in the sun yesterday so that probably didnt help but then again going out definitely did.

I am getting lots of twitches and spasms and muscle aches and weird pins and needle water dropplet under my skin feelings again. Rubbish.
 
Ufff proper fatigue relapse here. Very hard. off work. Had a lot of emotional stress including some rows and a recent break up and tbh combined with covid again in Jan that has done it. I tried to listen to my body and no point in blaming myself now that I didnt rest enough. the lack of sleep is killing me tbh... might have to start sertraline again soon.
 
Sorry to hear that. I know it sounds lightweight but do give Nytol a go if you aren't sleeping well. For a lot of people it reduces inflammation and fatigue as well as helping with sleep. It's also a weird and addictive drug - an antihistamine but with different mechanisms to other anti-histamines - so don't take it for too long and if you don't get on with it there's no point in persisting.
 
First off best wishes to everyone having a hard time.
Im looking for some advice....

Two years in i can summarise my position best as what feels like long term lung damage, which in turn can lead to fatigue, palpitations and muscle aches at times.
This is not uncommon, in fact is the most common long term effect it would seem
cardiovascularbusiness.com

Heart palpitations, chest pain among the long-lasting side effects of COVID-19, new research confirms

“Before we examined the data, I thought we would find an ample amount of the symptoms to be specifically associated with long COVID, but that wasn’t the case," one researcher said.
cardiovascularbusiness.com cardiovascularbusiness.com

In reading up about people with a fast heart rate (tachycardia) the symptoms include fatigue and dizzyness. I dont think thats me, but there seems to be interplay between breathing, heart beating and fatigue <probably obvious really.

For me I have some periods were I feel genuinely good, particularly in warm summer months. Not having a good spell this year so far though, but not bad enough to stop me from working, definitely wheezy, tight lunged a lot.

So far my GP experience is terrible, basically him denying its anything to do with C19. I have an appointment with a new GP next week. I'm thinking what to try and get from them and considering asking for a referral to a lung specialist - in London thats the Royal Brompton. I feel like if my lungs worked like they used to Id be fine.
I did have a lung xray at one point and they didnt find anything,

Im wondering if anyone has any thoughts about this request, or any other guidance about how to handle the GP
 
Thought this might be worth adding here - a BMJ article on the diagnosis and treatment of covid associated postural orthostatic tachycardia syndrome (PoTS):
Orthostatic tachycardia after covid-19 (BMJ).​
notabird.site

The BMJ (@bmj_latest)

Patients with long covid may present in primary care with symptoms of palpitations (tachycardia) triggered by standing or minimal exertion. This article summarises the key steps for diagnosis and management, and includes a #BMJInfographic https://www.bmj.com/content/380/bmj-2022-073488
notabird.site notabird.site
 
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