Long Covid support thread

[fedupofbed]

A thread for those with ongoing Long Covid symptoms.

Some resources very kindly collated by @letsbesensible in the last thread:

UK sepsis trust vids go.mumsnet.com/?xs=1&id=470X1554755&url=m.youtube.com/playlist?list=PL16uJ-CyqxJIJpdLhf-Ccjhdvf4uNBIie Physio for breathing pattern disorders www.physiotherapyforbpd.org.uk/
Dysautomnia webinar video go.mumsnet.com/?xs=1&id=470X1554755&url=vimeo.com/442593497?utmcampaign=5370367&utmsource=affiliate&utm_channel=affiliate&cjevent=38c74aa9fd7b11ea82d1002e0a180512 Articles, links, Resources c19recoveryawareness.com
Ricovr project videos

Thank you I’m just feeling really panicky as my temperature hasn’t been high but I have felt hot and cold but now it seems to be slightly raised and I just feel awful it’s so hard not to worry

I know @user1497873278 I feel for you. I also think panic and anxiety can be a symptom of the virus too (it can mess with your autonomic system). Just keep remembering though that the vast majority of people make a full recovery within 12 weeks.

@user1497873278
My initial symptoms were the standard two weeks. I did start to feel a bit better on day 11.
For the next about 6 weeks, it was like groundhog day. I could manage a few chores, but not many. It was at that point that I realised I needed to have serious bed rest for quite a while.

@user1497873278
Have you considered ringing the doctor or 111 or whatever the procedure is nowadays? Wouldnt hurt I dont think in your case? I expect there may not be much to be concerned about, but GPs always say that they did not close, and not to worry about contacting them, that is what they are there for.

@user1497873278 I felt a bit better after 3 weeks. Unfortunately a week after that I deteriorated again and 9 weeks later I’m still unwell. Speak to 111 or your GP.
I had an ECG last week which just showed tachycardia, bloods came back with low vitamin D, I’d been taking supplements but just the rdi. So now I’m on a higher dose. I feel like I’m improving in some areas but deteriorating in others. The pains are horrendous at the moment, I’m putting off ringing the GP but I’m uncomfortable and grimacing due to the pain despite regular paracetamol, ibuprofen and a hot water bottle. The pains are arms, legs, feet, back, hands. My skin feels very sore and bruised almost, including my scalp.
I’m also lightheaded again and walking round the house holding on to the walls and waddling due to the pains.

But I’ve somehow slept better the last 3 nights.
My chest is better because I’ve not walked out the house for days and my palpitations are reduced because I’m only getting up to go to the toilet.
I’m feeling quite down though as I thought I was improving last week now I’m back here again.

I know many of you have had it much much longer and I think you’re all amazing! I just hope we all get the support we need.

Another update...spoke to the doctor today and I need to book bloods and an egg. Mainly said take it easy and do little and often. I do feel like I've taken a bit of a dip this last week - joint pains are a little bit worse etc. They couldn't pin the weird flutter or dry / mucusy feeling in my throat.

Thank you for the replies, sorry to hijack the thread there just doesn’t seem to be many talking how the feel and it gives me some reassurance that others have felt this bad 2 1/2 weeks in, all of my days are normal it’s this hot head then shivering that I’m still having and just feeling so weak and ill, I have felt very panicky at times, have had some bad stories about people I know 2 deaths so this has made me feel anxious especially when I was feeling hot last night

Sorry not days are normal(I wish) I meant sats

Hi all,
Had a really terrible night last. Woke up around 2.30 ish with really tight, uncomfortable feeling in my chest and throat, that strange, fizzy, agitated feeling I haven’t had for so long.
Had to go downstairs, used the loo lots (sorry tmi) and just drank water and tried to stay calm as it felt like my tongue/mouth was swelling and my body shaking and just full of adrenaline. I took an antihistamine and tried to focus and keep calm, it was a really horrendous experience and haven’t had similar since May/June.
Has anyone had similar recently? I had a tuna sandwich before bed, stupidly, but haven’t experienced problems with tuna before, it is high histamine though. I also took a second Niacin tablet at around 5 pm for the first time, I’m wondering if that’s the issue or was it histamine?
My only option left now is to go totally on the low histamine diet or basically not eat, I can’t face that again, so scary

@Whatnext2018 sounds rubbish. Hope you sleep better tonight.
I was just looking up nutrients in tuna actually as I have been craving it, but not eating it because of the histamine content. Apparently it's high in selenium, magnesium and niacin - and is also Hugh protein. I've recently stopped taking magnesium and have been reliant on remembering to eat a couple of Brazil nuts a day to provide selenium so I think that's caused my craving. It's amazing how the body tells us what we need nutritionally.
I wonder if something similar happened for you?

@TiddleTaddleTatThanks so much, slept normally last night, woke up at 4, but just a normal wake, not the strange adrenaline fuelled one 🙈
I’m wondering if it was taking the extra Niacin as I haven’t had that reaction for so long, would a tin of tuna really do that, especially when I’ve eaten tuna before with no problems. The only difference is not at 10.30 at night. Other reason would be because I’m on my period or just a perfect (not perfect for me) storm of all of the above.
Scared to eat much now, only had rice, rice cakes and an apple since.

I called the doctor in the morning asking if I was ok with taking 200mg of the Niacin, he said I’d be fine 🤷🏻‍♀️But perhaps I had a reaction to it.
Chest sore this morning, has been for a while.
How are you doing now @TiddleTaddleTat

Just a quick one really for advice from people further down the line. I'm just past 3 months from getting covid. I feel like the last week I've taken a bit of a dip the joint pains are a little more bothersome. Can anyone recommend things that worked for them? I do short walks and break things down into manageable chunks

@Whatnext2018 feeling much better thanks, probably about 85-90% of my health prior to covid. I need to stay on a low histamine diet, take the antihistamines and take niacin daily or I get a bit more tinnitus and insomnia. However the fatigue has shifted considerably since I started those.

@TiddleTaddleTat That’s great news..almost there! 🙏 Do you eat bread and milk/dairy products? Looking at the foods, it looks quite challenging? No more tomatoes, citrus fruits, avocado etc, do you have meat too?
I’m thinking to cut all sugars not too bad as generally have done that, no caffeine or alcohol for 8 months either, so will continue that. Did you cut all dairy and carbs etc?
I spoke to a lady yesterday who’s been suffering for a year, she had a bad realise in October and then started a completely low histamine, organic diet and has been well since. She also talked about fasting too, has anyone read much about that? I’m willing to try anything at this stage!

Does anyone else still have a sore chest and heart area? This is my main worry now. I’m not sure if it’s muscular or something else.

Did some yoga this morning, hopefully won’t pay for it in the morning.

@TiddleTaddleTat that's quite phenomenal progress. So pleased for you!

Hello. Have posted a couple of weeks ago and really no change since then. Back at work but every day is like walking through treacle. Currently been napping on and off on sofa since 1pm as exhausted after working 2 days in a row. Am in bed almost straight after dinner on work days. My chest has a constant dull ache front and back and if I go outside the cold makes me have horrendous coughing fits. Still have the headache that was my first symptom 35 days ago. Was diagnosed positive 29 days ago now. I am a busy, energetic house proud 40 year old but I can just about wipe down the kitchen sides. When should I contact GP again? 14 days ago she said 4 weeks normal for recovery.

@amyj606 Personally I never had much trouble with joint pains.

@Iamsodonewith2020 It wouldnt hurt to contact her again, I would think.

@Whatnext2018 I eat some dairy, but not large amounts. Stick to low histamine strictly so no leftovers, ground meat, processed meat, cheese, fermented food, pulses, few nuts, avocado, spinach, mushroom etc. No chocolate. I'm already gluten free and can't eat oats or corn. Occasionally have gluten free seeded bread but don't think it agrees with me. No alcohol or caffeine. Both have caused relapses when I've tried.
I have barely any sugar but I can get away with a little honey on my quinoa flake porridge (!)
Generally a very dull and difficult diet but it has been worth the effort.

I have just found this post

I had covid in September with only mild symptoms. I have since had heavy chest feeling and fatigue. Gp is sending me for ECG and chest X-ray. Had any one else had this. I'm feeling really anxious...

@user1497873278 I was like you 3 weeks in. It’s unsettling because everyone else I knew was virtually better within 2 weeks and back at work. I only started to improve at about 6 weeks (currently 8 weeks on sat), prior to that I could just about hobble to the loo or make a brew very slowly. Agree the anxiety is awful but at your stage I would say you are pretty much out of the woods re needing crit care (most deteriorate between 5-14 days) I’m taking vit d and thiamine as I suspect my levels will be low due to being housebound since start of December.

Nancydrew1966 thank you that’s exactly how I feel everyone seems to feel better other than me, I have a really sore throat now it just seems constant, thank you for replying, the anxiety has been awful

Did anyone else here have the painful headache symptom return just before their first period after covid? Also did it return on every cycle afterwards?

@WhydoesItAlwaysRainMe I had light chest pain or feelings. Oodles of fatigue for months.
Resting and sleeping literally for 3 months, helped the chest pain come and go, until I didnt get it back any more.