Covid lungs long term. 18+ weeks support thread

[LetsBeSensible]

For anyone struggling with getting over covid, relapses and the like.

Started with the “covid lungs...” threads in March 2020, before “long haul covid” was recognized. New joiners welcome.

@fedupofbed great to hear you’re making progress and able to get back on the mat

i know what you mean about the mental difficulties!

I wouldn't be surprised if we all had PTSD after what we've been through!

@MillStone any chance you could repost the exercises you shared? I did a search but can't find. Thanks!

@pasinphoebe thanks for your words of encouragement yesterday. It is helpful to remember that whilst the sob is uncomfortable and worrying...I can still talk and sleep so can't be too bad, that really helped me yesterday.

Am trying more time in bed today - iPad games with the kids instead of going out...and the sob is lesser (for today anyway)...

@Millstone yes I have been walking again for a few weeks and doing your exercises twice a day. My chest is feeling much better although if I slightly over do it I feel my lungs are sore. Baby steps for me. I am going to stick to this until my lungs feel 100%. I too cannot wait to just go for a run or a cycle but a way off yet sadly.

@givemeanother yeah sure I’ll post it below. They are gentle but help loosen things up. My neighbour is a physio and said they were safe and fine to do.

m.youtube.com/watch?v=Kp8WK4hFs

@Kitcat122 great stuff. It’s so hard though isn’t it, knowing when to stop, especially when you’re desperate to exercise.

@fedupofbed ptsd, yes! Was screened for this the other day as part of a psych assessment and score high. Something else to work on 😖

Oh no @MillStone 🤦🏼‍♀️ that's another health project then. Are you being offered anything for it?

I've just gone and booked an appointment with a cognitive hypnotherapist! She was recommended to me by my very wise chiropractor (who also recommended my acupuncturist). Now that I'm feeling a bit stronger physically thought I'd give it a go, as I'm often quite low and/or a bag of nerves. She said on the phone that it's not about waiting for the storm to pass but learning to dance in the rain.

Thank you @LetsBeSensible for posting those videos, I found them really informative and helpful. As I gradually come out of my latest relapse I'm coming to terms with my current 'baseline' and what has tipped me over the edge. Driving even really short distances seems to be out for the moment, and I need to be very careful with walks of any longer than 2-3 minutes at the moment.

@fedupofbed oh wow, never heard of a cognitive hypnotherapist before. Love the idea of a chiropractor. How are you finding that and are you still attending acupuncture?

I like the dancing in the rain analogy. Don’t know if you know ACT therapy but it reminds me of the same approach.

Yeah I’ve happened upon a lovely psychotherapist who I’m starting person-centred sessions with in a week or two. It’s not just therapy for recent events but I think that is how it has come about.

@MillStone @fedupofbed interested in the different therapists you are mentioning. It's something I've considered but concerned about how tiring the talking / emotional labour / journey to and from might be. Is that an issue for you at all? Hopefully something I might build towards. I do think that talking things through would be very helpful for me.

I'm still here but have improved a bit in the last 2 weeks. Fatigue, sob and painful lungs, high testing heart rate that gets even higher with mild exertion. Constantly fizzy legs, pain in legs of standing for too long.
Got ill in April, this thread was such a blessing at that stage when I was scared and really struggling to breathe.

I’m now at 5 months post Covid. Is anyone else having a bloated stomach? Mine is hard and bloated. Not sure if this is related to constipation, and if this is due to Covid.

@MillStone I'd never heard of it either! I started seeing the chiropractor months ago out of desperation really - I was feeling so ill and so unsupported medically, and she is hugely wise, positive and experienced. In the early days it had minimal lasting effect as I think I was too ill but she completely got about the autonomic system and I felt great benefit from the sessions. I don't see her every week now but as my body's getting stronger it's responding more to her treatment. I would really recommend a chiropractor or osteopath to anyone with muscle pain or tinnitus.

The acupuncturist is also amazing but again it's been slow as I was in such a state originally. She also gives me CHM - she's part of a collaborative project helping people with Covid. It's hard to know though how much of my improvement is down to all this or time.

I really hope your psychotherapist sessions go well.

@TiddleTaddleTat yes I'm concerned about how tiring the therapist will be too, but after weighing it all up have decided to give it a go. I'm still living in complete panic half the time, especially when my SOB pops up. I figure it will help my body heal if I'm in a more positive mindset. And I need strategies to manage how long this is all lasting for. I don't know anything whatsoever about cognitive hypnotherapy but I'm hoping it won't involve too much talking/'work' from me.

Hello @wallyrag sorry you're still here but glad that things are improving - baby steps.

Hello all,
Venturing onto this thread for the first time though I've been following since the first thread back in March. Been such a help to read others' experiences.

Had mild symptoms (burning lungs, aches, chest pains, fatigue, racing heart) for 6 weeks starting in March. Then up and down small relapses since then. Ended up at cardiologist to rule out heart problems but luckily got the all clear.

Nothing for the last month or so till suddenly aching lungs and chest pains are back.

Does anybody think the recent heat could have triggered a relapse? It seems to have coincided with the hot weather but maybe that's a coincidence.

Have to do a Covid test soon for travel reasons and bizarrely worried it'll somehow be positive despite the fact that it's 6 months since first symptoms!

@givemeanother no worries at all, it’s such a help to be reassured on this thread isn’t it. I know the feeling IS horrible but if we can just find ways to calm ourselves / distract ourselves it does help. Hope you do continue to make improvements now.
It’s really interesting to hear the different things people have tried, I have heard lots about cranio and acupuncture for long Covid, @fedupofbed I hope the hypno brings some positivity for you, physical and mental are so tied in together aren’t they.
@Gastropod it could be linked to the weather but I also think it’s anybody’s guess what if anything causes the relapse! Hope your travels go ok.
I don’t know if anyone would benefit but there is a Facebook group something like positive wellness Covid long haulers (I hope I’m allowed to share that here ) that’s reassuring.

@pasinphoebe thanks, I'll have a look for the group.

I should know better by now than to look for rhyme or reason to these relapses, it's just that feeling of "finally I'm getting better" and then boom...

It's like a real life game of snakes and ladders!

@Gastropod @pasinphoebe I'm about 5 months in since being initially unwell in mid March. For myself I do think that the relapses are related to over-exertion, doing too much than the energy I have available. The videos that @LetsBeSensible posted below are really informative on this, particularly the one by the physiotherapist, may be video 3 or 4, which I found really helpful. At some point, I think I've triggered a relapse by something as small as unloading them dishwasher. It's the attempt to get back to 'normal' that is causing me to relapse, and every time it is so disappointing and frustrating to go right back to square one.

@TiddleTaddleTat I know what you mean, therapy can be draining at the best of times. I’m nervous about having enough energy.

It could be a great help if you do decide to pursue it. A great deal of getting better from this will be mental.

@fedupofbed Thank you, I'm excited to begin sessions because I felt they were so understanding and shared the same holistic beliefs.

It’s great that you’ve found such a good chiropractor and acupuncturist. I hope your hypnotherapy is a great success too. The CHM sounds interesting. I was contemplating a local herbalist for help with the ongoing reflux. I hoped they might have more knowledge than the things I have read about and tried.

As for not knowing what does and doesn't help or if it’s only time, It’s so hard isn’t it! I’m taking so many supplements that I worry about stoping one incase it’s helping.

I like to think everything we are doing helps a bit. Even if it only improves one small aspect a tiny amount, that in turn might help something else and so on

to those relapsing and feeling low. Hope today brings improvement all round.

Thanks @MillStone your words of support are welcome
My stomach bug has turned into a relapse - I know it was a bug but my body has dealt with it in an odd way unsurprisingly and I now go to the toilet at 3 or 4am apparently.
My period appeared with the bug and has just come back again a few days later. I’ve got a mirena coil so I’m used to non existent periods so this is a bit of a shock. Definitely must be something hormonal about what is happening to us what with the relapses normally corresponding with a period

@Criticallythinking yes I do think that the virus has essentially disrupted a whole range of the body's systems. My periods have been unusual too, the last one lasted over a week and stopped and started which hasn't happened before.
I was woken in the night by severe ovulation pain, fortunately it only lasted 5-10 minutes but was really horrible. I do often have ovulation pain but it isn't usually as severe as that.
Im still trying to get back to my baseline level of activity (able to potter around the house) after 3 days mostly spent in bed.

@TiddleTaddleTat oh I’m so sorry to hear about the pain. There’s nothing it doesn’t affect it seems. My periods had been ok until I caught this bug. The only reason I know it’s a bug is because my husband had it. He’s not been so unwell.

Does make me think is this going to happen every time I get a virus??!

I talked to my GP yesterday about my theory that Covid messes with the immune system and I’m having a way over the top response to something that isn’t that bad. She has been reading around and agrees- she is going to test for anything else it could be to rule it out and then we can at least be a bit more confident about what is going on. I’ll see but can’t have the blood tests for a while due to waiting for an appt...

@TiddleTaddleTat I hope this latest relapse passes quickly for you

I’m too lazy to look myself, does anyone recall what the “vibration” is meant to be? It feels a bit like what I used to call Very Beaty Heart. The heart rate is actually ok ish it’s the booming vibration you feel above all else that’s annoying

Good morning everyone
I m a new poster but following this thread since march.
This thread is so great to help people like us at home. You all lot are my best friend now
I thank each and everyone bcz I have come to learn or know more info from all poster. Thank you all.
I have still not recovered since march. Doctors not helping at all blaming anxiety.
How do I make my doctor understand to help me.
Please be kind,I am posting first time if I m doing any mistakes making post.

@Beautifulpeople welcome! It sounds like you need to speak to a different GP who is following the emerging data about long Covid - there is plenty out there now so they have no excuse to pin it on anxiety.
What are the symptoms you've been experiencing?

Thank you@TiddleTaddleTat
I have on and off relapses since march
I m getting acid refulx or GHERd. Dr gave me omepraziole to take, very bad mouth ulcer, dry mouth, white layer on toungh, he gave me nystan drop. In between two week of may was feeling normal then all back to square.
Since may I was telling dr about my musucle pain, burning upper back,musucle trench, fatigue,hand and feet burning chest burning but he just said it's your anxiety
I am fed of burning pain on my body.
Around end of may he did my blood test and chest x ray and everything was normal that time, so he now thinks all in my head now
Can u please tell me which test shall I tell him to do for me for my burning upper back and other parts bcz it's constant and I am worried something damaged inside which will go worse, oh and I can not bear my musucle ,knee and joint pain
I m going to ring tomorrow for test see how it goes
Can u please tell me how to go for rehab centre, I rang to the phone no someone provided but it's press centre.
I ask my dr about rehab centre but he is got no idea about it.
Sorry it's long post
I new here posting but you all have no idea I am following all u since march and it's so helpful when u all update about your progress and helpful resources. Thank you all