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.

@godhelpusall I'm sorry you're having such a terrible relapse. My relapses aren't particularly significant as my baseline is still very low. I've yet to have any real recovery period though I am gradually improving.

I'm definitely not up for work yet, and when I do it will be phased - not sure if that's something you can do?

I made it to the beach today - was wonderful to feel the sea air and dip my toes in the water.

@TaxTheRatFarms that's wonderful news - thanks for sharing with us! I hope school goes well for him this week.

Thanks fedupofbed fingers crossed! He’s only in two days this week so that will help. I’ve talked to him a lot about pacing so hopefully something has sunk in!

It just sucks that so many people are still struggling with this. The ups and downs make it so emotionally hard as well, as you stop being able to relax when you have an “up” because they’re so often followed by a big “down”.

Yes and no matter how much you try and mentally prepare for the 'downs' they're still so crushing when they come.

@Whatnext2018 my hair has started to do this too. I did get this before Covid and was surprised it hadn’t happened yet. I remember reading that your hair falls out three months after whatever was wrong so whatever happened three months ago influences it.

@godhelpusall good luck with work. I am also back in 2 weeks, at a Uni but have managed to get occ health to agree to my not doing any teaching... I have an academic contract though which helps. Still dreading it.

In other news I had a call from the GP last week, my stool sample showed inflammation so being referred to gastro. I am still having bowel symptoms 4 weeks after getting a stomach bug. I’m hoping I haven’t developed inflammatory bowel disease! That would be icing on cake. Did make me wonder how many of your relapses are due to new infections which our bodies go crazy over.

In happy news we were at center parcs this weekend and I got up the courage to go on water slides with friends and it was fantastic. Thought the adrenaline might help the autonomic dysfunction haha I also managed some long walks and cycling. I am not in relapse at the moment (except for my gut) so that helped obviously, but felt a bit hopeful.

Sorry for long post. Wishing everyone in relapse a kind day

Aw @Criticallythinking that's great about Center Parcs and the water slides! So lovely to have fun, normal times. I'm sorry that your GI symptoms are still ongoing though. Mine have come back a little bit too though not enough to cause concern yet. I'm wondering if some of my supplements aren't helping.

Oh and I've also started getting more hair loss - again not enough to start worrying just yet. I had a slight issue with this pre-Covid - ha, maybe my body/hormones are getting back to normal (trying to put a positive spin on it!!).

My milestone today was first shower in 5 months. I had previously had to stop because they gave me terrifying breathlessness. It's nice to chalk up these small victories.

@fedupofbed great news on the shower !! It is a milestone. Showers are knackering! Did you try turning it cold for the final 30 secs? Some people swear by it. I must say I have found I feel much more energised afterwards after the cold blast than if the water is too hot.

Hair coming out here too. Interesting about the 3 month thing - in late May I was having my first , very severe relapse that precipitated where I am now. My hair is coming out much more.

Starting a phased return back into work. So far so good but need to be so very careful not to end up in bed and unable to care for myself if I overdo it. I've done a couple of video calls today and that's enough to make my legs feel like they've run a marathon.

My tinnitus has become buzzing/fizzing. Anyone else have this? It's not constant but tends to increase when I'm tired.

Also - two other supplements have come to my attention in relation to treatment of ME/CFS which I might try out- evening primrose oil and Gingko Biloba. I remember someone mentioning EPA a while back.
Before I splurge more cash on creating even more expensive urine , has anyone seen any benefits from either of these?

I took Evening primrose oil for years (not for ME) can’t say it helped with either my periods or my ME.

@Criticallythinking @fedupofbed @TiddleTaddleTat The hair strands coming out really upsets/panics me, does it bother you? Will this stop? When? Or does it become a noticeable thing with patches of hair loss 😪

@Whatnext2018 yes it bothers me too. I haven't read up much on it as a bit terrified of bald patches etc.

@LetsBeSensible good to know! I'm already taking fish oil but think I'll increase my dose a bit.

@TiddleTaddleTat yes mine is now a buzzing/fizzing (TV static) sound now. Is this a good thing do you think? Means it's on its way out?? (she says hopefully) have had another bad night with it. So gets me down. Of all the symptoms, it's this which most negatively affects me.

Anyone had any success with Cbd oil?

@TiddleTaddleTat I wish you well for your return to work - take it slowly.

Yes I do the cold shower blast and find it very invigorating (previously did it with a shower attachment at the end of my bath).

I've not tried either of those supplements, though I am taking EPA Omega 3 fish oil which I think has been helpful. My next prospective purchase is D-ribose... anyone tried this or know anything about it?

@Whatnext2018 I'm not too worried about my hair at the moment but I understand how you're feeling. I first started experiencing hair loss about 5 years ago and was really concerned. My hair definitely got thinner but never to the point that anyone noticed, only me. And it was just thinner all over rather than anything remotely resembling a bald patch. It's kind of been at that level since with no noticeable deterioration so I've just kind of accepted it.

How is the haritaki going - has that had any noticeable effect?

@Norugratsatall I'm hopeful it's on the way out. It's certainly become less frequent/annoying. It seemed to reduce quite suddenly when I started taking turmeric supplements , have you tried those?

I was considering cbd oil too, used to take it for anxiety/stress but then I had one bad experience and have been a bit freaked out since.

@Whatnext2018 my hair has gone through periods of falling out lots for years so I am not worried, but can see why you would be. I lose lots when I wash it and when I brush but it’s never been noticeable even though it feels like loads. Then suddenly it stops. What is annoying is hair everywhere in the house!

@Norugratsatall my friend swears by it for her fibromyalgia. I tried it for sleep - it had an instant relaxing/ drowsy effect on me but no noticeable improvement in sleep quality throughout the night so I stopped. I also wasn't sure what brand I should get as the market seems quite unregulated.

Thanks @fedupofbed and @TiddleTaddleTat. No I haven't tried turmeric but am willing to try anything that will help! Off to order some.....!

Not sure how true this is...but may be of interest.
I had not heard of bradykinin or the Covid theory about it.
Although I am biased because people took to explaining cytokines to me (like people with ME don’t know already) and I like the idea that it wasn’t cytokines and they will have to eat their words.

elemental.medium.com/a-supercomputer-analyzed-covid-19-and-an-interesting-new-theory-has-emerged-31cb8eba9d63

@LetsBeSensible interesting theory, thanks for sharing . I don't know about this either, and it sounds like it is very much geared toward the active stage of the virus so not much use to us now unfortunately.

@TiddleTaddleTat I'm still with you on the Tinnitus turmoil,

I am awaiting an appointment with Audiology who have agreed to see me, I will let you know how it goes.

When I spoke to Tinnitus UK, the lovely chap said mine sounds like tonal Tinnitus & it could well go one day. He sounded gently positive about it, which gave me some hope.

That article freaked me out slightly - we are passed these effects, right?

And yes, my hair is coming out a lot as well. It fell out a few years ago during a period of intense stress and grew back fine, if a little more grey. It is distressing but it will grow back.

@Ernieshere what is tonal tinnitus? I haven't heard of this.