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.

@Criticallythinking
I’m sorry to hear it’s so widespread and persistent. I saw a rheumatologist a couple of months back when I had the same as you, plus swollen joints, and the conclusion was it was likely reactive arthritis caused by a virus (Covid) and would get better. It definitely has in that the sore joints are much improved, but I am left now with what is definitely nerve pain. I had to take Gabapentin a few years back when my nerve pain was particularly bad, it’s effective, but please do be careful with it. The low doses can quite quickly stop working, so you have to take more as your body adjusts, and coming off it can be very difficult. I luckily managed to eventually come off it and maintain my condition with exercise (lots of yoga) breathwork and hot baths. But now, it’s all flared up again and I’m not sure how long I’m going to give it till I have to try painkillers again!

Hoping it is just that - a flare up - and will due back down for both of us.

In other hews -I’ve been trying cold showers for the last two mornings, and I really do think there is something in it! My nerve pain really has reduced a bit, and I feel so much less fatigued and foggy. Going to try and stick at it.

Sorry to hear about everyone else’s symptoms picking up again. This weird humid weather certainly isn’t helping.

isitorisntit
Thank you so much for sharing your recovery news, this has really made my day! I can’t wait to be well enough to try exercise again. Long may it last.

Oh @Babdoc I’m so very sorry. Life can be unbearably unfair sometimes.

As a young woman in my 20s, I developed a severe infection and went into multi organ failure. I narrowly escaped death and was grateful, of course, but I’ve been left damaged beyond repair. It’s a very hard thing to get your head around. People kept telling me I shouldn’t be here at all as if that magically made me accept my disabilities!

Emotions are all often over and you do seem to go through a process of grief. I spent years angry, convinced someone was negligent and responsible, wanting to sue. I spent a lot of time crying and feeling hopeless, wishing they had pulled the plug. While it doesn’t get easier as such, on some level, you learn to accept the new normal and find happiness in the life you have. It still hurts but you learn to cope and I benefited from online support groups. I couldn’t have got through without the support of those who’d been in a similar position.

Be kind to yourself xx

I’ve just had my latest bloods back and been told I have tested positive for ‘HeP2’ but that they are waiting for my MRI results to interpret it. No doctor is available to speak to me until Tuesday and I don’t know what HEP2 is! Can anyone help? The receptionist couldn’t. Googling it it seems related to antibodies but what actually is HeP2?! Feeling very worried

Haenow, I’m so sorry you’ve been through all that, and have suffered the disabling consequences so much longer than any of us moaning about our Covid woes. It’s a very humbling and thought provoking post.
I am finding it very hard to accept such a suddenly limited life - I’m a retired doctor, and totally unused to being the patient instead!
I was widowed young with 2 babies, and spent 30 years rushing round, working at the hospital, juggling the kids - I got so used to doing everything myself, having to cope with it all, that I’m really worried about how to manage now that I’m so limited by my lungs. My grown up DDs live 50 miles away and work full time.
I suppose eventually, as you found yourself, you are forced to accept the new normal - but it doesn’t come easy! Especially with the uncertainty of whether recovery is a possibility, or whether one faces a decline to an unpleasant death in respiratory failure. I am trying not to look too far ahead, other than giving my minister my funeral wishes and sorting out my financial paperwork for the DDs. I can only ask God for the fortitude to endure this, and hope that even after all these months there may be a chance of improvement. Sending my love and prayers for you and everyone on this thread.

@Whatapickle78 I am not a doctor but I think HeP 2 relates to antibodies that are commonly found in people with autoimmune conditions (although google also tells me that 13% of perfectly healthy people have them too). So I wouldnt worry yet.

Thanks @Porcupineinwaiting
I can’t help it, it’s just a bit of a surprise really and very annoying a doctor can’t explain till next week...

@Babdoc - sending you both lots of love and strength. I'm sorry to hear how Covid has negatively affected your quality of life. The fortnight of drilling must be the last straw! I hope you can get someone to help you to pack and move away for a bit so you can get some peace and quiet. 💐

@Haenow sorry to hear about your experience too. 💐

For anyone that's interested, here is a screenshot of the front page article of today's telegraph.

@Haenow I'm so dreadfully sorry that you've been through so much too.

@Whatapickle78 I think porcupine is right, and if so this sounds similar to my results - positive ANA. It was very unsettling at first but yes lots of people have them with no condition, and also it's not black and white, there are so many shades of grey. All my follow up blood tests for specific conditions came up fine, but in a way I hope it is a bit autoimmune related as there is more chance of the meds calming things down.

Hi all, sorry to see so many of us still here but I still find it so comforting. I live on a hill and have managed to walk up it more than 3 times this week and last week which feels like a big achievement! Still have lots of strange and unpredictable symptoms but taking things a day at a time x

Oh and I'm glad the cold showers are helping @Whatapickle78 . I'm still doing it too and think I'll brave the paddling pool again today!

Thank you @fedupofbed
I basically burst into tears getting this result, it just somehow felt like the final straw I don’t know... as I felt things were finally improving a bit for me!

It’s reassuring that you say your specific tests were negative. I hope mine will be too. I guess it may just be showing that Covid triggers a general autoimmune response... who knows? Fingers crossed.

@fedupofbed just wondering how your acupuncture sessions are going? Are they helping at all.... have been seriously considering it to help with my tinnitus.

@Norugratsatall well they've certainly not had a dramatic effect. My energy levels and heart rate are slowly improving but it's hard to tell if that's the sessions or just time.

Despite this uncertainty I wouldn't stop going for the world though. My acupuncturist is just so wise. I'm still only having about 8 needles for short amounts of time in each session as she's really sensitive to how my much my body can take. She says I have to build up more and once I'm stronger I'll see faster improvements. She does a lot of acupressure massage and I can literally feel my body responding. She's also given me more advice on my lungs and breathing than any doctor has. I feel like I'm getting care from her that I've just not received anywhere else.

Also have you looked into cranial osteopathy? People on other forums have reported good things about this.

@andslee sorry we’ve upped and I didn’t do the tagging everyone thing. We’re over here

Hope your results are okay @Whatapickle78

Has anyone taken Haritaki capsules? I’ve read a bit about them and currently waiting for yet another Amazon delivery.

I second the cold water thing..went with Dd in our pretty deep paddling pool yesterday and felt great afterwards, whether that was down to relaxing in the sun and enjoying time with her or the water I’m not sure.

Bleeding a bit more today and relieved (never wanted that with periods before) will take it as a sign things might be getting more back to normal when proper periods return, hopefully. As of yet, still not there.

@Whatnext2018 no I haven't but I'm quite interested as I read about someone having really good results with that and neem on another forum. Keep us posted! Did you see any results with your last supplement... sorry I can't remember what it was called.

@andslee I just read your post on the other thread and hope your appointment goes well with the covid respiratory expert tomorrow - let us know. I have a zoom apt set up with a respiratory consultant for Monday.

@fedupofbed I’m not sure? It’s hard to tell if I’ve seen some improvement or it’s just happening naturally that there’s teeny progress (mainly, bar the relapse type things, which are pretty common)
But overall, I reckon it has made progress.
That one is Beta glucan but I’m also on Vit D, C, zinc and cod liver oil, plus lots of green tea and hot water with lemon, ginger and tumeric. It’s hard to know what, if anything is honestly working though 🤷‍♀️
I have noticed that sugar possibly has a bad affect on me..still not tried booze yet! Not keen to at present tbf.

@fedupofbed - Thanks, I will do. @LetsBeSensible - Cheers!

I think I'll test positive in an ANA test too. I bet you anything. Going to push for this tomorrow...

Well dare I say my breathing and chest pain have been better. Totally NOT recommended I know but have been using my sons brown inhaler for a few weeks (I know a doctor would have a fit but I am getting desperate 🙄). Either it's worked or coincidence 😜

@fedupofbed thank you. I'll look into that. Sorry the acupuncture's not working as you'd hoped but pleased you're getting SOME benefit from it anyway.

There are a series of videos made by the UK Sepsis society about general Covid symptoms, being promoted in the fb group
Link here m.youtube.com/playlist?list=PL16uJ-CyqxJIJpdLhf-Ccjhdvf4uNBIie

@Whatnext2018 I've noticed a vague negative effect from too much sugar, but am eating limited amounts.
I'm also limiting dairy but still having milk in tea and coffee (2 per day!) , cereal and yogurt.
Booze-wise I've found gin and tonic is no good but I can have red wine with a meal with no effects, and prosecco - although hangover on top of symptoms is pretty horrible.
I had a weird panic attack-like experience yesterday , accompanied by the leg pain and chest pain. Think anxiety was the main driver - I watched some of that 'surviving covid' BBC episode and totally freaked me out I suppose. I've realised I need to be more careful about what I watch and read, need to stay away from the news.
I'm quite concerned about a second wave/increase in cases here. DH and my DF have not had symptoms of Covid yet and both would be in higher risk groups. Having been through this, I am so much more worried about them catching it.
I'm glad to say the fatigue continues to recede, but other symptoms remain mildly. I first got ill in the middle of March. Due to return to work in a few weeks so will need to speak to GP about possible diagnosis that covers me for occupational health.

Sorry @Babdoc and others, I read back and feel like I me-railed and I didn’t mean to at all! I wanted to share my story and show there is hope out there and you can live a life again. The early days are hard and it’s not easy to accept. I expect it’s harder in many ways for those recovering from severe complications because we are still so socially distanced. Having support from others is so important. What you’re going through is horrible but it’s not surprising given everything. Be kind to yourselves and don’t be alone, even if it’s online support, it’s very important.

Take care everyone.

Any long-haulers been on any flights? I’m so torn what to do. It is a two-hour flight to my parents.

@babcoc Fingers crosses for full recovery. Sending hugs.

@TiddleTaddleTat I’ve cut out coffee completely, it was more to do with not wanting to increase anxiety, but now I’m wondering if I could reintroduce..a green tea in the morning isn’t quite the same as a nice coffee!
I’m filling myself with so much fruit and veg and supplements, really hope it makes a difference. Dairy I don’t eat loads of, Greek yoghurt and cheese sometimes, no milk now as no coffee, although maybe a bowl of oats sometimes..it’s pretty boring isn’t it..!
Sorry to hear about your panic attack, I kept flicking it onto the programme and then switching back over quickly, it’s like I want to be informed, but then scare myself to death. Definitely better to limit news etc, I haven’t watched the news properly since March, definitely doesn’t help at all.

What are everyone’s thoughts, do you all think we’ll all be okay, after all this time, we should just slowly recover without any issues?
Also, what do you think the chances of reinfection are? Do you believe we can get it again?