Covid lungs thread 18 weeks plus - thread 2

[LetsBeSensible]

A thread for those with “long covid” experiencing symptoms for around six months now.

Some resources
UK sepsis trust vids m.youtube.com/playlist?list=PL16uJ-CyqxJIJpdLhf-Ccjhdvf4uNBIie
Physio for breathing pattern disorders www.physiotherapyforbpd.org.uk/
Dysautomnia webinar video vimeo.com/442593497?utm_campaign=5370367&utm_source=affiliate&utm_channel=affiliate&cjevent=38c74aa9fd7b11ea82d1002e0a180512
Articles, links, Resources c19recoveryawareness.com
Ricovr project videos

Video 1 - An introduction to the CRESTA team and fatigue
Video 2 - Managing your energy and daily activity
Video 3 - Looking after yourself during your recovery
Video 4: - Activity and fatigue
Video 5: - Question & Answer session on common issues for Covid-19 recovery

m.youtube.com/watch?fbclid=IwAR3UTulpBNKHkJFf-jRfOSoXSMGjTtX5MOgOfLOmDsBbJaP8JHsIy70G-k8&feature=youtu.be&v=94ZYVxtdNHY

A new and quite interesting run DMC vid.

... should mention, it’s not triggering. It’s more theories (based on science) as to why this is happening .. and a way forward.

@MillStone brilliant, thanks for sharing.
Lots there to think about. It looks really solid research to me, going off to read it more fully.

Hi all just popping in to say I’ve returned to a reasonable level today. So that’s a good week of being wiped after flu jab.
It does seem that my immune system does me no favors going nought to sixty and the hint of an illness....so it might be a “Me/CFS” problem rather than a covid problem.

@LetsBeSensible good to hear you're feeling stronger.

May I ask your opinion on CFS Vs Long Covid and how you feel they differ? Because you refer to them separately, I'm guessing you regard them differently.

I'm getting some help from my local CFS service and my clinician always makes a distinction between the 2 when we discuss topics.

But when I have a read around CFS forums, look at our durations, symptoms and similarities, it's hard not to wonder if this is now CFS.

There does seem to be a noticeable subtype of long covid that are breathless, heart issues, very weak and fatigued, PEM, OI, brain fog, poor sleep etc etc.

Sorry, I know CFS is more complex and personal than the last symptoms I noted above ... I was just cherry picking the key similarities I see between the 2.

My take on it from my own experience is that there is likely post viral fatigue syndrome, which may have progressed to CFS/ME, but that is in addition to long covid. I suppose since we've had a significant viral illness we can have both the pvfs plus whatever long covid turns out to be.
CFS itself is so woefully under researched and the discrimination people receive has been quite eye opening.

@TiddleTaddleTat that’s a really interesting idea.

There do seem to be people who are riddled with nasty Covid type symptoms but not so much with fatigue.

From my own experiences the two do seem independent at times.

@TiddleTaddleTat @MillStone interesting discussion.
It’s hard for me to really know the difference between CFS and long covid because I’ve always had CFS, so I don’t know what I’d be like if I didn’t have it!
With CFS I periodically get unwell- the “fake” virus - every few months and my reaction to the flu jab was exactly like that. I didn’t have an actual infection. But I felt like I did. I had aches, fatigue, swollen glands, sore throat, a cough at one point. But it never quite got “really bad”.
I was sweating but no fever. Coughing but no sputum. Stuffed up nose but no real need for a tissue.
I think that “my” CFS is caused by some kind of system dysfunction. Any hint of an illness and the immune system goes mad acting like it’s fighting flu. And I think that comes about when I’m over tired as well which is why it’s every few months.
I think I did have covid. As some of you have found, the areas covid upset (breathing/chest, sinuses n my case) seem to be the areas that are weakened or damaged and they get inflamed or upset the next time you get ill (even with fake illness) kind of like my lungs now have ptsd so any hint of illness sets them off all hysterical and they call a code red, make me cough, body gets fatigue from the lungs carrying on like there’s an emergency, etc.
Certainly I had CFS previously and I have never been so unwell or so fatigued as I am now, for as long. I’ve had a bad patch of around 3 months before.
I would guess that CFS support would help some long covid sufferers. As you found out, there’s not exactly much support or treatment anyway.
Then again some people like our histamine lead @AndsLee seem to have a different covid reaction with the histamines.

Anyone here developed permanent livedo reticularis since having CV?

My thighs look a state with it and after doing some searching have found that some people have developed this.

I don't remember having this on my legs in March so now think I got CV a second time in late summer. My back is burning still every day

@LetsBeSensible

I go along with that... It's the same pathogen causing different reactions. It picks on your weakness. I have been thinking about this. I would like to say I never had allergies before, but actually when I think about it I think maybe there has always been little niggles, like with certain perfumes for example. This has just ramped it up!

Hi everyone. I'm glad you're feeling a bit better @LetsBeSensible

I definitely edge towards the more ME CFS type symptoms as opposed to the allergy related ones. Even so, both the specialist I saw privately and the NHS consultant I saw last week have diagnosed me as PVFS/ Long Covid and borderline ME CFS. They are both reviewing in a few months. I think this is because up until my recent horrible relapse I was gradually improving, and I haven't experienced some symptoms (orthostatic intolerance, swollen glands, sore throat) for several months. I feel like I'm hanging on a precipice at the moment, as to how quickly I'll bounce back from this cold and how I'll be affected by all the other oncoming winter bugs.

Today I have managed 2.5 hours work from home at go slow pace, emptied the dishwasher and half hour restorative yoga. Just mustering the energy to finish the laundry. So I guess I'm back to the levels I was before my relapse. I'm terrified of overdoing it though.

I'm thinking of trying the Perrin technique next, if anyone has any experience/ knowledge? Or am I just continuing to throw away money to find the magic cure?!

I have recieved my hospital appointment for the post Covid clinic in January 😂😂

@Kitcat122 what a joke. They're obviously quite busy then! Apologies, you've probably already said, but are you also based in Sheffield? Still nothing where I am (SE).

@fedupofbed see you were a lot more I’ll than I was, I think. I wouldn’t be able to do 2.5 hours of work unless it was at a time and day which suited me. I do have some paperwork I have to do, yesterday was the first time in over a month I could manage sitting at the computer working.
When I first got CFS I did have the POTS symptoms for a few years then I guess they resolved. I didn’t get assessed, just medical family mentioned it.
I got CFS before I made my Facebook account yes we had the internet back then but not social media. I think LongCovid is a really important turning point in giving patients a voice. If we were not all talking to each other, around the world, with GP’s and Professors also suffering, we’d only be getting an offer of CBT and a record of anxiety.
Never heard of the Perrin technique.

@fedupofbed that sounds like a good day , glad to hear you are regaining some ground on where you were before you caught the cold.
I'm now on almost full time WFH hours. Three days a week at my computer, with a couple of 30 min rests throughout the day.
Lots of tough meetings in which I'm required to think on my feet.
Writing these, I can see that I've made a lot of improvement in the last couple of months.

*writing this

@LetsBeSensible thanks, very Interesting to hear your thoughts on both. With both syndromes being so person centric, it’s so complex.

@Kitcat122 sorry that’s crappy

@fedupofbed yeah I started doing the Perrin’s exercises a bit ago. I’ve watched a fair few of his lectures on YouTube too. He makes a compelling case.

There are demos of his technique on YT, I’ve been doing this one after someone posted it on Yoga FLCR. I believe it’s more or less correct. I think the key is to be very gentle.

m.youtube.com/watch?v=8ESXf9PL0_Q

Does it do anything? Mmmn Dunno... but it feels nice and it’s relaxing, mindful 10 mins.

I also saw another movie, where they pumped the are above the collarbones to aid drainage.

@TiddleTaddleTat yes you have come a long way! Do you find though that you still feel the same but just able to do more within those symptoms? I guess that I've found it hard to measure my progress because I always seem to feel the same (but looking back I've been able to build on what I can do).

I think 2.5 hours with a quick break/stretch every half an hour seems to be okay for now. And it gives me the flexibility to choose a time of day that's best for me. I'm just doing it twice a week at the moment, and only recently started again after my relapse.

You are so right about the power of social media @LetsBeSensible . I know hardly anyone in real life with this. And I'm sorry that you and others with ME CFS have been neglected for so long 💐. I think Long Covid has put a huge spotlight on this which will hopefully pave the way for much more funding, research and recognition.

Sorry @MillStone cross posted. Thank you for the information. I tried that video once then forgot all about it - maybe I'll try again. Cheaper and easier than travelling miles to find a suitable osteopath!

@fedupofbed I don't feel the fatigue as severely, that lifted a few months ago and now it is mostly tiredness and sluggishness but not the whole body fatigue.
I can see progress from the number of steps I'm able to do, I'm naturally increasing activity just around the house and garden... now at a stage where I feel I can start taking very short walks outside. One thing I'd really like to start doing is drop or pick up DD from school. My DH has been doing it all and I'd really like to start helping. School is only at the end of the road, seems a small thing, but feels normal! Which would be amazing.

Oh wow @TiddleTaddleTat that's fantastic, real progress! Maybe you could start by meeting them on the way back halfway up the road? Small steps, we will get there 💪.

Hi all , I'm about a month on from first symptoms of Covid - when do you start thinking it could be long Covid
I've been off work a month and have dreadful fatigue , breathlessness, still no smell, aching legs and joints , burning patches of skin, tingling lips , racing heart

All intermittently except the fatigue that is almost permanent

All I do all day is rest - it's like my life has stopped !

Hi @cherrytreeblossom sorry you're having such a terrible time. It's such a whirlwind of different symptoms isn't it. I'm sorry, I don't really know when it becomes Long Covid, and everyone seems to have a different experience. Some seemed to suffer more mildly in the beginning and then it ramped up later in time. But for me personally it was pretty intense from the very beginning and I remember about the 3-4 week mark being incredulous that it could last so long as I didn't have any previous experience of being so ill. The people on this forum are still struggling but I think many others have recovered in much shorter timelines (hence they don't post any more). There are also a few long haul Facebook groups and the Slack Body Politic Group.

You sound like you're doing the right thing - just keep resting and then resting more, also lots of fluids. Hopefully your GP will be of help too, now that more is known of how Covid can play out in some people. I know it's hard, but try as much as possible to stay positive and hopeful, whilst accepting that you're feeling so ill now. Be kind to yourself. For me the constant worry/projecting negative future thoughts just made everything so much worse.

Sending love and strength xx

Got my letter from the PoTS clinic following the investigations and says I do meet criteria for PoTS. My heart rate increased over 30bpm and went to 135 on standing. Interestingly the Fitbit only recorded it at a max of 100 so it is definitely not useful for tracking things medically.

I am so relieved that this has been recognised and hopeful for my improvement! I've been treating this as PoTS for a month or so and seen such improvement that I thought this might be part of the picture for me.