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

@Dogatetheleftovers

It’s so draining, isn’t it. I’m sorry you’re feeling the same. My GP isn’t that helpful and dismisses a lot of the symptoms. Hasn’t even mentioned Covid.

I’m also worried about getting Covid again, but also about having the booster jab. When I had my first two I was in a ‘well’ phase and it made my chest flare up. I’m not good at all at the moment so am scared to give my immune system anything else to deal with. But equally I don’t want Covid again!

www.telegraph.co.uk/health-fitness/body/nine-things-could-raise-risk-long-covid/

www.bbc.co.uk/news/world-60708123

www.wired.com/story/the-secrets-of-covid-brain-fog-are-starting-to-lift/?utm_source=pocket-newtab

Dear All, I’m so desperate for answers. Me and my husband caught covid in March 2022 and have not been 100% well since then. The symptoms all mainly come and go and if we overdo it or have a busy day the symptoms get worse. The main symptoms are GI symptoms including loss of appetite and cramps but also have on and off fatigue. I developed heartburn and also heart palpitations- the heart palpitations seemed to have eased since I stopped any caffeine. Has anyone else had these symptoms and is there any advice at all? Back on Omeprazole and booked in for stool test. So fed up as it has been 6 months. Thank you all

"On March 25, 2020, Hannah Davis was texting with two friends when she realized that she couldn’t understand one of their messages. In hindsight, that was the first sign that she had COVID-19. It was also her first experience with the phenomenon known as “brain fog,” and the moment when her old life contracted into her current one. She once worked in artificial intelligence and analyzed complex systems without hesitation, but now “runs into a mental wall” when faced with tasks as simple as filling out forms. Her memory, once vivid, feels frayed and fleeting. Former mundanities—buying food, making meals, cleaning up—can be agonizingly difficult."

forums.phoenixrising.me/threads/one-of-long-covids-worst-symptoms-is-also-its-most-misunderstood-mentions-me-cfs.88581/

I had very mild covid at the beginning of April and have struggled with my breathing ever since.

I was also coughing terribly (had no cough with actual covid) this has eased somewhat.

I'm very mucousy and cough up phlegm. I've had a chest x ray, sputum test, camera down my nose and throat and all fine.

I'm asthmatic but the breathlessness feels different somehow.

I'm 53 and am just fed up! I struggle to walk up and down stairs - any exertion leaves me gasping. I'm just so frustrated with it and not being able to do anything fast.

@Crayfishforyou @Ernieshere @Fishflakes @givemeanother @godhelpusall @KatySun @LetsBeSensible @Lightsabre @Meercatmama @MillStone @Norugratsatall @Kitcat122 @Moodgie @TiddleTaddleTat @Whatapickle78 @Whatnext2018 @longshot @fedupofbed
Hello all...
I'm just wondering how everyone is doing after the horrendous time we all had in 2020...????

@AndsLee
i am doing a whole lot better! I’m pretty much back to normal. I have to pace myself, if I push my limits too much I get a small relapse. I also can’t really tolerate alcohol anymore. If I have two glasses of wine or any spirit I get horrid ‘extra heartbeats’ for a few days.
But I have my life back, and I will never take feeling normal for granted again

Hi @AndsLee , I am fine (I think!)
I caught it in Feb/March 2020, lots of symptoms - it was awful and this forum kept me going! - and it took me the best part of the year to recover fully. I would say I started doing much more in August/September, and I think the following Feb I was back to normal.
Caught it again in July 2022, throat issues and a couple of days of muscle pains/headaches and then fine. I cannot tell you how relieved I was! I had three jabs following the first infection.
How are you @AndsLee ?
@Boda2021 It will get better 🤞🤞 - I had palpitations and recurring fatigue as my last remaining symptoms, but I got over it. Rest and not overdoing it, and eating healthy are crucial I think. I felt much better when I avoided processed food, coffee etc. I took Zinc, Vitamin D, Vit. B complex occasionally, and Vitamin C (and some hair vitamins) - and I still do.
People kept saying stop before you get tired or you will pay for it the next day and I think it is true.

This thread is very helpful. Despite 2 vacs, a booster and being fit and healthy I'm not better nine weeks after covid (July 2022). PEM, fatigue, headache, tinnitus, fast heart rate. Please send any more tips - and stories of recovery too. Xxx

Hey @AndsLee great to hear from you. How are you after all this time? @Moodgie so glad you're all fine now and survived reinfection (I did too!), and glad you're good too @Crayfishforyou - it definitely changes your perspective on life.

Gosh when I think what we all went through back then, so horrific- all those crazy terrifying symptoms in the middle of a lockdown, minimal health care , no recognition that LC actually existed, and just the fear of not knowing what was happening and what would come next. Very traumatic, and this forum was a bit of a lifeline for me.

I wouldn't say I'm back to full health yet but getting there. I'm working 20 hours a week, looking after my family and able to go for long walks, go on holidays, etc. I'm really appreciating this after so much time housebound! I still get random odd symptoms that pop up from time to time, and have to manage my energy levels. I've not started running again yet but thinking of starting c25k very very slowly.

I'm also about to start sessions with a life coach/ therapist. Hoping this will help me with the lingering trauma, as well as helping with mindset going forward. I really want to learn and grow from this experience instead of slipping back into all my old pre illness patterns.

@BG2015 and @Boda2021 I'm sorry you're doing through this now. @Boda2021 I had heartburn, Gi symptoms and palpitations too. I found a really good probiotic helped heal my gut, and the GI symptoms/heartburn. The palpitations eventually went by themselves - I personally didn't have any meds for them.

For anyone still struggling I would really recommend joining Suzy Bolt's Facebook group. It has a wealth of information and resources, and all very calming.

Thank you so much for your response. It’s just so hard when in the middle of it though trying to stay positive as already better than 3 months ago despite some lingering symptoms. I have started using optibac probiotic which seems to be helping the heartburn a bit - would you mind letting me know which probiotic you used that helped GI symptoms? I just never expected covid to lead to GI symptoms! Unfortunately due to all this distress and two young children I have developed anxiety including health anxiety and have also started therapy sessions CBT which has been very good so far. Thank you for the Facebook group recommendation - I’ll sign up to Facebook to join and read up on Suzy bolts info.

Thank you so much for the advice - trying to stay positive. Really dreading if I catch covid again! But hopefully It won’t be as bad second time round

I was on this thread a bit under a different name back near the beginning. I’m also largely recovered - I’m not sure I’ll ever be 100% again but I’m about 98% and that’s good enough! Still on medication to manage pain issues (but it is 100% effective if I remember to take it!), still cough a bit, still fatigue a bit faster than I used to. But my day to day life is largely unaffected now.

i remember at my worst changing the duvet cover on my bed on a Saturday and that meaning I couldn’t do anything on the Sunday.

@Boda2021 totally understand re staying positive, especially as recovery is never a straight line - sort of up down and very very wiggly!

I used Symprove, but I know that Optibac is a really good brand too, so hope it helps you.

I'm sorry about the anxiety. I developed health anxiety too which I'm still working on. I hope the CBT sessions continue to help. X

Hello everyone! Nice to hear from a few familiar faces during that dreadful lockdown period when we were so scared and isolated.

I'm practically back to full health bar the odd symptom or two, plus still get very tired. I'm currently at Istanbul airport waiting to fly home after a five day holiday in which I've averaged 15K steps a day in the heat! So can't be doing too badly.

Sending best wishes to those still on their recovery pathway. 💐

Glad to hear you old timers are getting better / almost at fully recovery. Can I ask when you hit the 90% recovery mark?

I’ve had LC for about 9 months, and echo the FB group advice, esp the Suzy Bolt one. They’ve been far more helpful than any medical professionals / NHS!

im definitely better than I was a few months ago - my initial symptoms were mild and I got progressively worse, reaching my worst point around Easter, and it’s been a slow improvement since then.

My worst symptom that hasn’t gone away is this strange head pressure at the back of my head. Not always in the same position, but always somewhere along the back. Has anyone experienced the same?

Wow blast from the past! Glad to see many are doing well!
I have plateaued I think. I can do some stuff like go shopping, I can travel a bit and socialise a bit but I’m still at Moderate ME/CFS and I’m being investigated probably have PoTS. I’m still trying to get treatment but the PoTS investigation has to complete before I can be considered for ME clinic.still waiting to hear about speech therapy. I’m excluded from anything “long covid” as I already had ME which would explain my symptoms. It sucks.

Hi!

Previously on here as Whatnext2018,
Feeling back to normal-ish since around January, before then was still quite ill the majority of the time, so it took almost two years to see proper recovery 😔
Caught covid again at the end of May and have had a few of the same symptoms but v v lightly since then. I wouldn’t say I’m 100% because I still have the odd weird thing come back and still don’t have the energy I had pre covid…at all, but I live my life pretty normally.
Still don’t drink alcohol though as I’m just too scared…the worst ever effects a month or so after covid the first time around involved a night of pure fear and strange adrenaline rushes, following two glasses of wine. Tried a half a glass, not even that, of champagne at a christening last October and felt achy and with that strange bust head/overwhelmed feeling I used to get.
I mainly don’t think about it all, but if I sometimes do, remembering all the terrifying things i and we went through is a lot, it’s the most frightened I’ve been in my life and most confused and out of control, it just seemed to last so long and we never knew if we’d get better…I have whole chunks of memory missing from that time, my Dd was 1.5 and that makes me really sad.
But I’m glad we all got through it and I don’t believe we’ll ever get like that again 🙏
These threads were a lifeline to me when nobody else could help or understand, I still don’t think they really do (parents etc)
Hope you’re all in a much better place and thank you for all the support.
@AndsLee Thank you for tagging me Xx

@Rispa42 I was too ill really in 2020 to write on this thread but it gave me comfort. Pain at the back of my head and neck was one of my worst, debilitating symptoms. I control it now with amitriptyline. I tried coming off it and it was awful again. I sometimes still get a sort of echo of the pain, that is more like a pressure. Like a bruised feeling. I don't know if it will ever go but the pain is largely under control

Hello all,glad to see so many of us are almost back to normal. I'm still unable to run for a bus and get fatigued more easily than before but I can work full time and lead a pretty normal life. The trauma has been worse though really - very little medical support, the fear of never getting 'better' and no-one knew much about it as it was a new illness. I feel more vulnerable too now I know what a really nasty virus can do (and to all intents and purposes, I had it mildly - no ventilation or anything like that).

I have a cold at the moment and am always relieved when things like this cycle through in the normal way.

I’m so glad to hear you are nearly fully recovered. The fatigue is just awful and feel the same if I run or walk fast. I have a cold too at the moment and glad it is going ok. Mentally I have been really affected post covid. It’s scary to think that a virus can do this

Thanks for the tag!

I am also in the mostly fine / recovered gang thankfully. I am back working, exercising and living generally a normal life however would say I have very mild CFS type symptoms but I know my limits and they are constantly expanding so I am generally feeling positive eventually I will be back to my old self 100% however I am now not sure I want to be when I reflect on what a busy stressed life I was leading (hence why I probably got LC anyway). I have also had Covid again since, much less severe, still no fun but recovered fast.

For me the longest lingering symptoms were / are fatigue (still have very mildly now, moves on quickly) and heart issues. I had myocarditis from Covid and then again from the vaccine. It's gone now but i still get the odd heavy / achey heart feelings after cardio exercise. But mostly i feel well. I still don't feel I could go out dancing / drinking for a night which makes me a bit sad as I am only 40 and enjoyed that very much in my 30s but overall my life is pretty good again and I can run around (literally) after my kids and do most stuff i want to.

Sorry should have said, I had Covid March 2020, started to feel moderately ok Nov 2020, improved since then, felt mostly recovered since May 2022 (with increased tiredness) so it took 2 years but was a gradual process.