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.

@TiddleTaddleTat I’m definitely managing this relapse better and I’m back on ibuprofen which is helping (but doesn’t help my stomach). My reaction to it all, and my mood, is probably hardest to manage I think. Great news about the mindfulness, I have also started this and found it helpful.

I’m finding lots of people around me saying don’t assume every symptom is a relapse, or will last a long time etc but we know our bodies right?? Or maybe I am being too negative

@Criticallythinking
I think the nerve pain is something to do with post-herpetic neuralgia. I literally have had 2 small single chicken pox marks on my left hand. Think the virus triggered old immune responses.

@AndsLee so it’s potentially being retriggered again when I come into contact with more viruses I guess. That’s interesting.

Just a theory... But my nerve pain seems consistent with the description of this type of neuralgia. I feel like I am getting wee electric shocks from time to time.

I think the nerve pain comes and goes as it's healing. Not sure about if it's triggered when we are exposed to other viruses, but I suppose that would make sense. Our bodies are still calming down, so the introduction of another invader would trigger an overreaction. It's like our bodies are learning again.

@AndsLee that all sounds reassuring. I’ve been exposed to a few things via DS and it always seems to make me flare up, though less severely each time. Hoping our immune systems sort themselves out. I guess it’s like a pack of cards thrown in the air in terms of what Covid has done.

@Criticallythinking Maybe run it past your hubby and see if it makes sense? Xx

Hi all,
Just done a week of work (school), generally have thought I’m ok since early August.
I have had something of a cold brewing for the last few weeks - assuming it’s a cold as a friend from my bubble had had it for ages too. Only mildly stuffy nose and scratchy throat on and off. But chills since yesterday and the annoying throat sensation. Had to cancel plans for today as don’t want it to get worse. The fact that school is freezing with all the windows and doors open has not helped. I’m hoping this is just a cold not some relapse. Sending love to everyone.

I hope all those with colds manage to recover soon. Our immune systems must be exhausted!

Six months in, ive developed a new symptom. Tingling around my mouth, anyone else? It's mildly annoying more than anything but is somewhat disheartening to develop new symptoms so far along. I e also had some joint pain in my wrist. Normal symptoms have flared this week too and I'm not sleeping well. Suspect I'm in the grip of the six month relapse. Oh joy! 😔

Hope you all have the best Sunday you can.

Hi everyone
Glad to see some improvements in some of you. Just like @Moodgie been back a school a week and now have an absolutely stinking cold. Dont really get colds much being exposed to children but this one has the full works. Runny nose the sinus problems, ear ache and scratchy throat. I know it is a cold as my son and girl friend who has started to live with us in the last three weeks again had it and my sons girlfriend got tested for covid twice due to her job and came back negative. She also tested positive back in April. Husband has had it and also granddaughter and other son, Compared to how I felt in March and beyond though a set back it is not that bad. Before this was tired due to going back to work full time, had the dry throat and intermittent cough occasionally but generally felt up beat and well.
Wishing you all the best

Hey guys, just thought I'd check in. I'm generally ok, though the esophageal/oral thrush is something I'm having to manage as it's taking absolutely forever to abate. I've taken a lot of medication for it but everything works well for a few days, then rallies back.

My costochondritis definitely still flares up. I used to use a slideboard with light weights as part of my workout routine and I tried using it again recently. First off it was obvious that my fitness levels are still very poor compared to how they were as I was in bits on the floor after less than 15 minutes. It's an extremely high intensity exercise but I was able to do 45-50 minutes quite easily in early March. And after 3 short routines on it, it's become obvious that it triggers my Costo quite badly. So I'll be waiting another few months before trying it again.

I also have throat/thyroid issues that go away/flare up on a continual cycle. They are definitely waning with each cycle less severe. And in the last few weeks I've finally been able to lose a lot of the weight I'd put on while I was sick. So I think that's a sign of my thyroid getting back to normal. I've completely given up ginger once I realised my thyroid was an issue and I think that has helped.

DS has a bad cold at the moment and needed a Covid test on Thursday. It was negative as I assumed it would be (because even though reinfection appears possible, I think it would have been very unlikely). There was almost a part of me that wanted to pout because he couldn't get a test when he almost certainly had Covid, but had to go through it when he didn't. But I guess that's just life until there is a vaccine.

@Norugratsatall sorry to hear this I’m also in relapse and I have the tingling round my mouth, though that’s something I had early on which had gone away and has come back.
I have nerve pains in my wrists and crooks of elbows that come and go, and awful shoulder pains that come and go.

Sending you strength, I’m sorry we are living through this 6 months in

@Criticallythinking . Ah thank you. I was hoping it was just 'one of those things' and wasn't Covid related in any way.

I'm so sorry you're relapsing too! It's heartbreaking and demoralising isn't it? Particularly as people on the Facebook group are posting stories of their recovery and being 'symptom free'. It's hard to believe I'll ever be well again. Lots of 💐for you.

@Norugratsatall You will be well.
I haven’t been here much recently and haven’t had time to look back through the posts - but have any of us here fully recovered like you are saying about the Facebook group? I thought I was 95% but not so sure now.

Hi everyone,
Just checking in.
At nearly 6 months still main symptoms nerve pain.
Not a bad day today, quite a busy one.
But still feel there's a way to go.
Glad some of you feeling better.
@AnnsLee how is your nerve pain?
I know you were not too good last week.

Hi all, sorry to see some have had a difficult time. I’ve been very tired and hormonal. My life is measured in period, ovulation, pmt. maybe symptoms are related or maybe they just seem to be because that’s my only marker of time.
I will be 6 months this week. I’m so fatigued. Having a lot of joint pain (it’s not sore joints though, just where the pain has taken up residence). Have had a number of friends announce they will be coming to visit, which I am not happy about. One was fine, just wanted to see me for a good catch up, the other thinks I need them to “check up on me” so will call sometime in the week. WhetherI will answer will remain to be seen. Course my place is located at a convenient half way point in their journey.

@Norugratsatall maybe we should positively reframe- if people are getting better it means we will too, eventually. @Moodgie I know what you mean I felt like things were headed in the right direction then bam.

@AndsLee hubby thought it was feasible, probably in some way we don’t understand but definitely immune related. He thinks my immune system is just going crazy. I read that twice as many women as men have long Covid. So he thinks the fact more women affected is not coincidence, our immune systems differ because we are the ones that have babies (even if we don’t/can’t have them) to allow us to carry them. He has theories about my having had terrible morning sickness and post pregnancy issues with my immune system and my getting this.

@LetsBeSensible I think hormones have to play a huge part, my latest relapse has happened a few days before my period.

@Criticallythinking What are your symptoms now?

@Moodgie horrible waves of pain in my shoulders that feels like someone crushing my bones. Nerve pains in my elbow crook and wrists that also come and go. Tingling on side of my mouth. Stiff hips and back ache. Brain fog, exhaustion. Diarrhoea (that’s not gone since I got a stomach bug 6 weeks ago).

Think that’s it for now but sure I’ve forgotten something

@BeautifulPark

Hi there, thanks for asking after me. I still have a bit of nerve pain going on, this and the sensation of breathing through dust is the only symptoms I have left. And, I have to say, compared to others on here I wouldn't really class myself as "bad" persay. It's manageable. I'm finding that if I rub my skin with active hemp and menthol gel, it tricks the nerves into feeling cold rather than pain, and so this seems to be working.

I've said before I think the symptoms move in 8 week cycles, each time lessening than the last - the flare ups are less intense. My 6 month anniversary will be on 17th September. I really do think we will heal. If you look at where we were from March - May, and then from June to now...we are improving, so it stands to reason that this will continue.

How are you doing?

@Criticallythinking That's interesting about the "crushing bones" feeling in your shoulders. I do have this odd feeling around my collarbone, like a restriction, which I think is to do with this "laryngeal obstruction" thing. It's not sore, just weird.

I noticed today, the tips of my fingers on my right hand are no longer wrinkled! They have been for all these months. My left looks as if it's catching up too. I honestly think that Hemp Gel is doing wonders.

We are healing! Honest!!!

Morning all, I too think we will heal! We are healing! But it will take time. And I also worry about all the other bugs starting to do the rounds now and how they will impact us - sorry some of you are going through this already.

@AndsLee very interesting about your wrinkled fingertips - I thought it was just me who has this odd symptom! Glad yours are finally getting back to normal.

@Criticallythinking and @Norugratsatall I also had a tingling mouth and chin. It was one of my more persistent symptoms until a few weeks ago. The doctors I spoke to seemed to think it was related to my breathing. I thought this was the case too because I never had any other nerve pain or tingling sensations anywhere else, but who knows?

I've had 2 lovely days not overdoing it and enjoying the sunshine. My sleep has been a bit better too which is definitely giving me a boost in the day. I'm generally feeling positive at the moment though this changes very easily - it just takes a twinge or reading something negative to set me off.

I too am really benefiting from meditation. Never would have thought it before all this. Does anyone use Insight Timer app? Loving it.

Morning all!

This latest relapse has offered up the most awful insomnia! I finally got to sleep at 6! I'm exhausted, have a work meeting tonight- have pulled out. Luckily my employers have been so understanding. Took 2 piriton and 4 kalms over the course of the night - nothing worked.

I know we're healing but it's so agonisingly slow and non linear that I can't see the woods for the trees atm. But that's possibly because I'm so sleep deprived.

Sending you all love and healing vibes.

@fedupofbed

OMG Sleep! Hell I slept for Scotland this weekend! I had a nap on Saturday! I haven't been able to do this until recently! During the acute stages (I am sure you remember) I wasn't sleeping very much at all. I was getting about 7 hours of sleep once I began to relax a bit on average. But the last couple of weeks... I have managed naps during the day, and the last 2 days have slept from about 10.30pm till my alarm at 7am! And... napped! And...today I slept in for work. I don't care...I was so chuffed! I came bounding into the office... "Hey everyone, I slept in!" No apology...hahaha ;)

@fedupofbed
I was a wee bit scared that I had caught a cold or something... The fact that I was so tired. Famous last words, huh? haha