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

I had long covid from April/May 2020 until January of this year, still get the odd weird thing coming back but nothing major 🙏scared to say that as it was a horrific part of my life. I tired every vitamin going, it may have just gone on it’s own and may be a coincidence but when I started taking anti histamines twice per day, it made a huge difference. I can go days without them now, but if I start feeling a bit off, I take them again before bed. Also in January, I started gentle fasting…not eating until after 12pm and then not after 8pm after seeing a Fb group where it had helped so many, repairs the cells more quickly I think?
Wish you all a speedy recovery, please know that it WILL get better, it doesn’t feel like it at the time, but it honestly does, it can just take some people a longer time X

Thanks all

It is good to hear others who have gone through/going through it as it is quite isolating.

I am lucky as my work has been very supportive.

Thanks for some of the tips, will definitely check some of them out.

I think the main thing is I feel guilty for resting and feel like I should be up and about - DH works from home all the time so I feel like he is always noting what time I get up, how long I sleep etc.

Just found this thread. I'm wondering wether I have long Covid. I was really ill back in March 2020, I had a really awful stomach bug and at the time my doctor did tell me to go for a covid test but i couldn't get one as i didn't have the classic symptoms. Ever since then i have been ill. I couldn't eat properly for months which resulted in low iron and follate. I have since had covid two more times since then as well. Once in January this year and again around 8 weeks ago.
I am on Beta blockers for Sinus Tachycardia and i also have blocked eustachian tubes in my ears which I'm under ENT for.
I'm constantly exhausted, I get a lot of pain in my arms and legs. I can't currently work so im signed off. I suffer with my stomach and get bad indigestion. I get a lot of back pain as well.

Hello, found you all. I used to post on here under a different name in the Lungs days. I found it hard to keep up with and find the Lungs threads so I posted less and happy to say that have had some better weeks/months this year. I’ve been trying to improve my brain fog and Neuro stuff via HRT route and some aspects of symptoms have got better.
Hope that everyone on here has been feeling as well as can be expected, if not completely better. My NHS long covid consultant says we will get better but it will ‘just’ take time, hope that helps anyone to hear, if things are a struggle for you at the moment.

At the moment I am symptomatic, I had some kind of viral flu-like infection about a month ago and tested Covid negative but now back to the relapse every 7-14 days routine that feels just like long covid does.

So I am pretty wary of what’s coming next for work and relationships and already sick of the return of headaches and pain and nausea and have a lot of guilt around the DC and my employer. Happy to know there’s still a place to come on MN though for mutual support, although sorry that so many posters are still ill or in very slow recovery.
Wishing everyone on the thread well (in all senses of that).

Thank you for posting about your experience and the encouraging message. Can I ask how the HRT has helped please? X

Hello HaveYouTried. I’d say that HRT hasn’t solved the long covid but has helped on some things that would have made it much harder to cope with. I’m mid forties now, caught covid first time in March 2020. I think I have had it again roughly about quarterly since. Triple vaxed.

I had found myself basically falling apart physically, especially in the weeks and months each time after getting covid again- having to lie down a lot because of exhaustion, no energy to do anything, being out of breath on any physical exertion, joint aches in fingers, toes, wrists, ankles, hips, tinnitus, gut problems, prickly sore itchy skin in specific places on thigh and back of head, sore neck, sore throat, headaches that painkillers don’t touch, really bad insomnia, lack of concentration, no recent or working memory, very anxious, hair falling out, lower back pains, shooting pains in my heart area, stabbing pains in torso and fingers and toe tips, dry sore eyes, dry vagina, palpitations, vertigo, feeling very flat and sad, POTS symptoms and then I started to get hot flushes.
At that point my GP gave up telling me I was too young to worry about the menopause and prescribed HRT. (i noticed the crossover of symptoms with long Covid so I asked about that and they told me I was too young). They underprescribed the HRT at first I think, but it seems that everyone has to go through trial and error to find the dosage that works for them and I learned on MN that younger women may need more oestrogen to start with.

So now, apart from when I am symptomatic with Covid, since I am on a higher dose of HRT, the hot flushes have gone, the joint aches too, the anxiety and the insomnia are quite a lot better. So I think for me it was definitely worth a try. I read that covid can affect your hormones and certainly loads of women have said it’s upset their periods. I think for me it tipped me into peri menopause. I don’t have periods because I have the Mirena for contraception and fibroids so it’s hard to know what’s going on, but that’s my hunch. Wishing you the best of luck with your symptoms.

Thank you for taking the time to write this. Really helpful x

Hi everyone please can I join. I think my DS (14) has long covid issues.

He was very ill in hospital with a bowel issue in the August, needed emergency surgery. He then had covid the first time October last year. Was quite poorly and chest infection. All the usual symptoms. Xmas last year Ill again. Not COVID.

February Ill again, not COVID, then April tested positive again, bad symptoms again. I caught it off him in April with mild symptoms.
Three more times since april he's been ill, including at the moment and it's on his chest again, always fever, temps, cough and feeling off symptoms.

He was never a poorly child at all since before he had Covid last October but also I feel it's linked to his bowel surgery. Never had any problems at all and he rarely picked stuff up

His iron is constantly low and he's been on iron tablets most of this year, more blood tests tomorrow. He's also taking zinc and vitamin c, but still getting ill all the time

Is anyone else going through this, is this typical of long covid issues?? Any advice appreciated 😞😞

Sorry that's meant to say August 2021 very poorly with bowel emergency, then COVID in Oct

Hello All

Hope everyone is doing ok.

GP has signed me off now till 9th Jan and also arranged for bloods and a chest x-ray so that is good. I did ask about sleeping tablets as my sleep is all over the place but he said they are generally reluctant to prescribe them as can become addictive which is fair enough.

I have also applied for the Nuffield COVID-19 Rehabilitation Programme (I saw it mentioned previously on here when I was reading through the thread)- have a triage telephone appointment on Thursday for that so will see if I am suitable.

Hi @FancyFlapjack and everyone else who is still suffering post covid. I caught it in March 2022 and I’m only just recovering fully now. It’s been awful and experienced all symptoms from heart palpitations, extreme fatigue, muscle aches, loss of sleep and lack of appetite. What really helped my sleep is to read a sleep book (funny enough - happy to share the details) and magnesium. I also bought some herbal sleep tea to make it part of my evening routine. Hope this helps those suffering with sleep issues post covid. It truly is an awful virus and for those who catch it badly the recovery can be lengthy but there is hope as I think time and rest is what eventually got me better though this was very hard to do as at the time I had a 2 and 5 year old.

Hello - hope everyone had a good Christmas and New Year.

Blood results back showed I was anaemic and vit D deficient so started on meds for that. GP rang today with results of chest x ray- it showed a chest infection which GP said he is treating as pneumonia so I'm on two different antibiotics for that now also. So at least I feel like there is light at the end of the tunnel and there is something to be treated.

@Boda2021 - yes please share details of sleep book, sleep is still all messed up!

medicine.yale.edu/news-article/potential-new-treatment-for-brain-fog-in-long-covid-patients/

new research if anyone is interested 🌺

That’s really interesting UseYourFork
it makes total sense that anti inflammatories are helpful. Thanks for posting.

Thanks @Useyourfork. I've got an appointment at LC clinic tomorrow. Does anyone have any advice on what I should be asking for? Most debilitating symptoms are fatigue, brain fog and feeling nauseous (v rarely actually sick). I have other symptoms, but these are the worst for me. V low mood sometimes, but that's down to limbo of not knowing when I can get a semblance of me back.

Ask for help with pacing and also for advice on supplements.

Has anyone found that getting covid again has helped? I don't know if it was psychological but I caught covid again and took my time really recovering and it definitely seemed to help

Thanks

Hi @peaceandpotato thanks for sharing and glad you managed to rest second time round and have recovered well. I’m dreading catching it again and to my knowledge haven’t yet caught covid again. When I first caught covid in March 2022 I didn’t rest enough and symptoms were probably worse due to that and took 6 months to disappear fully. May I ask if your second covid infection was as bad as the first? Thank you

The actual infection first 4 weeks was about the same but with less fear of the unknown. Also my back hurt for the 2nd infection. I was lucky in that I didn't get any breathing symptoms it is mostly the fatigue brain fog and muscle aches that lingered for me. I am wondering if I will feel even better after a 3rd time but frankly don't want it ever again!

I had my first infection Feb 2022 and 2nd was in August 2022. I had only just recovered from the first lot to the extent I was back at work doing the expected hours etc when I got it a 2nd time.

I found getting Covid again neither hurt or helped. I've reached a point where I could just put my remaining symptoms down to being unfit after nearly a year of no exercise, but find all my long Covid symptoms return if I try and do any!

I also have exercise intolerance which, as a previous fitness fanatic, is hard to cope with both physically and mentally. If any one has seen any progress with PEM or tips that would be appreciated. Am already pacing and avoiding graded exercise training. Had covìd July 22, still off work with LC. Awaiting LC clinic appointment... x

I had issues with exercise too and while I’m probably still only 95% “right”
I can now run and go to the gym again - it’s taken nearly 2 years to get here but these days I can exercise and feel better and stronger for it rather than feel that it’s drained everything out of me. I’m still a little cautious about pushing it too hard on cardio, and I am starting from a very low fitness base now but so so much better than I was.