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 Exactly 😂

Second the coconut water, every time I’ve had it I seem to feel better, might make sure I buy enough for everyday

@fedupofbed thanks ,looks like these products mainly contain magnesium, sodium and potassium. I guess I'm trying to add these anyway through diet and supplements so might try and just increase potassium rich foods. Baked potatoes with skin apparently a very good source!

@CFSKate thank you, it's so difficult in these early stages to understand what is the baseline and why it drops and how to get it back up. Similar to @fedupofbed I struggle to do nothing at all (habit of a lifetime!) maybe that's why I'm in this predicament. After the initial infection I know that I did far too much and then the fatigue ramped up around month 3, fortunately I did pull back a great deal at that point but am have only seen very minimal improvement since then really . My concern with the diagnosis of CfS at this stage is that it is a novel virus and mechanisms are still not understood. I think the CFS/ME management advice is very helpful and is the most effective advice I have found, but the diagnosis implies that further assessment is not required which I think is a risky position for Covid.

@AndsLee
Hi like you my main issue is burning skin on whole body all the time.i can not cope any more.
Bit scared now. Something's damage inside.
My dr also gave me gabapentin 100mg one three times a day.its only two days so let see
May I know what was your dose and how many a day? Did it give you any side effect? How long you taking?
Is it worth going to rhumetology which dr refer me. I m self funding and it's very expensive for me.
Is there any other home remedies or over the counter medicine or supplements help?
Thank you. I m crying like baby while writing this.

@Beautifulpeople I’m so sorry you are feeling sad. It’s completely understandable and you are not alone. I have been taking Gabapentin since April. I started on 300mg three times a day and now take 600mg three times a day. I had side effects just for a couple of days- dizziness, upset stomach, but they passed quickly. I found it really helped with my nerve pain but took a good week or so to help and I had to up the dose.

I have seen a rheumatologist but they said my pain was nerve pain and this was some sort of post viral condition. I’ve had lots of tests and scans but all came back negative except for my low calcium. My joint pains are now much better.

Do hang in there, better days are ahead xx

@Criticallythinking
Thank you so much for reply
Burning pain is extream,then it goes to knee and joint pain. other symptoms like acidity,fatigue,palpaition,tintinus,stomach issues,rases, musucle twitches they all comes and goes and bit manageable.
March it was only upper back now
it's spread to whole body mostly 24 hours which freaks me out.
Thank you for comforting words and hope.
Six months now waiting for all to go.Some days feel like you can do it, other days like sobbing and crying.

@BeautifulPark I know exactly how you feel about emotions being up and down. I wonder if you have picked up another virus that is making your immune system overreact as you fight it off? All the other stuff is still out there. Also try not to blame yourself and whatever you have been up to- I found that made it all worse. You are where you are.
Attaching a photo of a card I bought that helps me x

@beautifulpeople

I haven't been put on any meds so far, but your Gabapentin (or however it is spelled) should help you. I believe nerve pain after viral rashes is not uncommon.

@Beautifulpeople I don't know much about the nerve pain sorry but just wanted to say sorry you're feeling so low - for me too some days it just all feels too much. Lovely uplifting card @Criticallythinking ❤️. We are strong and we are getting through this.

@Criticallythinking Thank you for your kind encouragement.
@AndsLee I totally understand about nerve pain 100 percent know
what you mean. I visited an osteopath today who helped me years ago with a bad back. I went expecting encouragement, but it was a weird visit as she tapped my spine my very dry burning eyes (another post covid symptom,it was a a bit like Tiny Tears they just watered. I felt quite good when I got in and from being quite low, my temperature was nearly normal. She said this kind of treatment can make you feel worst before you are better, and the truth is the feel-good effect is wearing off ,but has given me the confidence to carry on with the treatment. Perhaps the Facebook support groups are right, it is finding a treatment that will work for you..
Alternative therapies do address the whole body.

@Beautifulpeople So sorry you’re feeling so low, it just feels relentless doesn’t it? I think it’s the not knowing when all this will end or get better. I try to always remind myself of my worst times in May and June and how horrendous that was and the difference now, it’s huge, but still ill, try to keep the faith you will get there, sending big hugs, you’re not alone in this at all.

I’m day 2 of my period and feel awful, aching all over, headache and neck, throat, back of head feels all sort of full and swollen up. I have my parents here and have probably overdone it. Today I’m not leaving the house and just trying to take it easy, just getting so sick of it now though, it’s neverending.

Burning in arms and hands today too.

@Whatnext2018 argh that sounds awful, period plus overdoing it a bit is always the worst time for me. Not leaving the house sounds like a good plan. Are easy meals or being cooked for an option?
Fatigued , chest pressure and ear buzzing here today . Bit of a stressful day too so I am trying to slow down this evening and tomorrow as much as possible.

It could be in my head but I felt a little bump in energy today after drinking a Diarolyte ... will keep it up

@TiddleTaddleTat Sorry you’re feeling it too, bit better than this morning, crazy how quickly it changes!
I just roasted chicken & potatoes in the oven and served with salad, so pretty simple really. Had a lot of takeaways/eating out over the last few days, that may not have helped! So am back to all the good stuff-fruit and veg now.
I haven’t had the energy drinks (is that what it is?) but a couple of months ago, my dp got me some rehydration tablets to put in water and I’m sure they may have made a difference, need to get them again and stock up on the coconut water.

Just to keep update. Had my results from cardiologist today - heart is in great health he said and my lungs were clear. My heart monitor picked up some minor abnormality so he diagnosed me with inappropriate sinus tachycardia. It’s when your heart races for no reason. There is medication for it but as he said it’s not dangerous and he is very happy with my results I chose not to take them for now.

@findingschools4myboys that’s great that it isn’t dangerous! My husband suspected this was what I had with the racing heart (he’s a doc) so it’s good to know you had that confirmed. Mine has settled for now.

My DS has a cold after just two days at school. I am freaking out cos colds are coronaviruses and because everytime I catch something it sets me back by 6-8 weeks and I’m due back at work in 2. Arghhhhhhhhhhhhhhhhhhhh

I found this an easy to understand recent overview of what we know about long covid m.youtube.com/watch?feature=youtu.be&v=QchVvZbMTGE

@TiddleTaddleTat interesting. Who is this guy? He doesn’t do an intro?

@Criticallythinking his names Gez Medinger (I think), he's a filmmaker who has been ill since early on and made quite a few videos on it, he's also done a bit on TV. Helping the cause!

@Criticallythinking I’d love if my dh was a doc..! Helpful in this situation 😂 what does he make of all this?

Pmk as I lost the thread...

@Whatnext2018 he’s fairly baffled and also frustrated that he can’t help. Him being around kept me out of hospital when the Covid was bad, and it certainly helps when I talk to the GP etc, or need to see someone at the hospital. He gets very fed up of me asking questions and I am in the position of knowing a bit (we have been together since he was a very junior doc and he’s now been a consultant a while) but not knowing enough!

At the very least I can always rule out being at deaths door!

Hi everyone
Having been holiday and then back to teaching this week I have not updated
So a quick update. Great holiday in England with the family where we walked, went on the beach, did fishing in rockpools, swam for the first time in six months and generally had a full on holiday. It was great but the evenings saw a time when husband and I both crashed with tiredness and was in bed between 9 and 10 each night, There was times when SOB crept in, some sore throats and for me the cough returned . Big problems headaches especially when I got tired
Back to school this week and managed it. Tiredness evident more than most years and in bed very early . Sore throat and a bit a sneezing and aches in really odd places such as my ear , hip and toes and fingers. Was so worried I would not manage it and feel now at 97% but the evenings are when I feel really tired still feel the symptoms but the are getting less. Had a lot of problems with diarrhea though
Husband is still battling the SOB and tiredness. He is now on an inhaler but improving He is two weeks behind me
Looking back it is almost six months from the date when I got really ill on 16/3 but had a sore throat, cough and tiredness for two weeks before that . I can't believe it is that long However I am starting to feel more like me. Still really pacing myself and now enjoying the down time and rest I plan into my schedule. I going to continue this as this has really improved my quality of life
Wishing you all well and improvement as the days go by. I never thought I would get this far but am still expecting the next relapse

Hi all am busy with Aunt Flo she has taken me doooowwwwn.
Need to write myself a reminder, I have always had “hypnagogic jerks” all my life. Yesterday I had one whilst standing up walking, in the afternoon. Apparently they can be caused by neurological problems so....still quite weird.

Please could someone post the link to the website where all the long haul articles are added regularly. I can’t remember it!