Covid lungs thread 18 weeks plus - thread 2

[LetsBeSensible]

A thread for those with “long covid” experiencing symptoms for around six months now.

Some resources
UK sepsis trust vids m.youtube.com/playlist?list=PL16uJ-CyqxJIJpdLhf-Ccjhdvf4uNBIie
Physio for breathing pattern disorders www.physiotherapyforbpd.org.uk/
Dysautomnia webinar video vimeo.com/442593497?utm_campaign=5370367&utm_source=affiliate&utm_channel=affiliate&cjevent=38c74aa9fd7b11ea82d1002e0a180512
Articles, links, Resources c19recoveryawareness.com
Ricovr project videos

Video 1 - An introduction to the CRESTA team and fatigue
Video 2 - Managing your energy and daily activity
Video 3 - Looking after yourself during your recovery
Video 4: - Activity and fatigue
Video 5: - Question & Answer session on common issues for Covid-19 recovery

@TiddleTaddleTat that’s great about your walk with no PEM. It sounds like it’s all going in the right direction.

Hopefully we’ll all find ourselves in a positive feedback situation once things start taking off. Fingers crossed.

Hope everyone’s doing well.

Can I ask, has anyone else had their flu jab? Was it OK?

@AndsLee I got mine in Tesco 4 weeks today.

I actually felt very slightly achey, around a 2/10 if that helps, for 2 days then nothing.

In comparison, I caught a virus the second week the DC went back to school, around 9 DC were off with it, mine went to a mild Pneumonia

It took me 3 weeks to get over that, It was absolutely awful. Full on bed rest, no appetite, chest pain etc.

I know we can't avoid these things, but knowing we have had the flu jab makes me feel protected somewhat now.

P.S @AndsLee, I was really worried about having the jab, until a poster on tjis thread said it's better than the flu, it put it into context for me.

I told the Pharmacist my concerns about Respiritory history from Covid, and he felt this was even more reason to be protected from Flu.

He 'made' me stay in store for 10 mins afterwards, in case of any reaction, I think he asked this of everyone though. It made me feel better that they were keeping an eye on us.

Hi everyone - hope you're all as well as can be! Just in case you haven't already seen this - Claire Hastie who runs the Facebook Longhaulers group and Dr Louise Newsom (Menopause Dr) are running this new survey to explore why so many long haulers are reporting changes to hormones/periods/early menopause symptoms.

You can fill it out hereforms.office.com/Pages/ResponsePage.aspx?id=XtdGw5304EuhMdjYBIyBs8c0UZEu-o1Flupl9HSmz-pUREZSNEMwQzlUS0ZFMVdINVJRWktTTVVSWi4u&fbclid=IwAR2iZtgqTEKiz3zwLdB9ISTRUyUQj2fopi1FGhEmf_77vdChNhcQJM__F84

xx

Sorry clearer link here:

forms.office.com/Pages/ResponsePage.aspx?id=XtdGw5304EuhMdjYBIyBs8c0UZEu-o1Flupl9HSmz-pUREZSNEMwQzlUS0ZFMVdINVJRWktTTVVSWi4u&fbclid=IwAR2iZtgqTEKiz3zwLdB9ISTRUyUQj2fopi1FGhEmf_77vdChNhcQJM__F84

@AndsLee
I had the flu jab with no problems. I'm still undecided about getting the one for pneumonia too. I would do it, as Covid caused pneumonia for me and @Ernieshire's recent experience sounds terrible... but I am a wee bit nervous about that one causing a reaction.

Has anyone had it?

@Whatapickle78

Thank you for the link, due to this thread and how I feel obvs, Im starting H.R.T today.

I have been awake for 18 nights in these past 4 weeks.

I really hope it helps, although one poster is on H.R.T and her sleep has still got worse since Covid.

Good luck @Ernieshere I hope it helps. Not sleeping is completely awful, I really feel for you. Xx

Hello everyone.

@Whatapickle78 thank you for sharing the survey. I've just filled it in, and I've also just received a prescription for HRT too so will start again next week.

I think I've decided I'll get the flu jab but maybe in a month's time when I'm completely over this relapse/cold. The general consensus on forums seems to be that for most people it didn't trigger a relapse. Run-DMC/ Gaz Medinger did a survey confirming that in more detail - it's on YouTube. @LetsBeSensible I hope it's not had too much of an effect on you?

I'm also undecided about the pneumonia jab. I think I'll park that until I actually get a letter from the GP. I've never had either before.

@Ernieshere I'm sorry about your sleep. I'm currently managing on half a piriton, a weighted blanket and breathing exercises. I'm not sure what's helping and what isn't, and I seem to have good weeks and bad weeks with no logic to it at all.

@AndsLee @fedupofbed hello! I am feeling better today. I certainly did feel awful yesterday, I had some disco naps and takeaway (delivery) for tea as I was weak and felt rough. Some breathlessness. Achy muscles, the low level type of flu symptoms. Today just a sore throat.
As a pp said, I’d rather a day or two feeling bad than catching the actual flu as I think that would finish me right off!
I don’t think it’s going to trigger a relapse. Don’t feel that way.
I would say if you can “plan” for it, get plenty of snacks and drinks, go shopping before/ take the next day off work/get it Friday and take Monday off etc that would help.
I will be taking lots of extra care not to catch any colds, lurgies, viruses this winter. I’d fold like a wet newspaper.

@Whatapickle78 thanks for the hormone link, glad it’s going ahead!!!!

How are you guys getting a flu jab? Boots and tesco say only people eligible for the free vaccine can have it. My work usually gets us vouchers but they are unable to this year.

@Ernieshere it was me that HRT was a game changer for me sleeping well, until Covid. I always wake up about 4 and am awake from then. I have some nights like last Sunday when I got to sleep at 4.45am. Alarm goes off at 6.00!!😱

@Kitcat122 I'm eligible because of my coeliacs but have never taken it up before.

@Kitcat122 I booked mine as soon as they were announced. Luckily I got in there just before they stopped issuing them to non vulnerable patients... though I probably would have argued we are very vulnerable.

Yes I might ring my doctor to see if I can be considered. I do feel I am vulnerable this year with bad lungs and high BP.

Mine as from GP. I am vulnerable due to neurological illness (CFS/ME) although my GP told me I must get it this year what with how I’ll I have been.
In previous years I have paid for it, when I was working.

Sorry should have said I paid for it in a pharmacy...

@Kitcat122 I really really hope your sleep improves as well.

I took my first tablet for H.R.T at 20.00 last night, fell asleep at 21.00 & was awake at 04.00 (thought of you & your 04.00 wakes!)

I had toast & tea and went back to sleep until 07.00.

I'm wondering if I need to take it around 22.00, if it's going to give me roughly 7 hours sleep.

That's if it is consistent.

Just out of interest, what time do you take your tablet usually?

Good luck everyone with the flu jabs that sounds very sensible, if you can get them.

Thanks for the survey link WhataPickle. I responded. I’m not on Facebook, would someone be kind enough to post the results on here if possible? I’m really wondering about perimenopause, because there are some common symptoms with that, that I wonder if they might be a possible factor in all this. From reading up on it, allergic reactions initiating or getting worse can be related to peri menopause and I definitely feel what’s happening at the moment is allergy- related. Thanks everyone.

Good luck with it Ernie insomnia is the pits. I find valerian tea helps - Dr Stuart’s. Not mixed with anything else pleasant-tasting. It reeks but it works.

I dont want to derail too much about Peri-menopause at all, but as there are 34 possible symptoms of it, I actually have 20 of them.

promensil.co.uk/34-symptoms-of-menopause/
I am really hoping I see an improvement soon, and the results of the survey will be really interesting. I'm not on F.Book either, but hopefully we will be able to see the results.

Hi everybody, on sleep, my recommendations are also for valerian (I take dormesan valerian drops in water) and melatonin. Both are non-addictive so can take long term.

I also wondered whether anyone else is struggling with back pain. I have aches across my upper back and shoulders that I can't shift with pain killers. I saw an osteopath for my chest pain a couple of months ago...and if anything my back pain has got worse since then (might be unrelated)...my muscles just feel so tight, but I also know I have moderate curvature in my upper spine from my chest x-ray for shortness of breath.

I guess what I'm trying to figure out is whether the pain is covid related, inactivity related or working at home related on a crappy chair etc and where to go for help.

Valerian is good for sleep (I was taking kalms one a night) however as I was having quite forceful palpitations I had to stop as it can be a (uncommon) side effect. The palpitations and fatigue are my worst remaining symptoms now.