Hello everyone meet Georgie, my best mate, strongest person I've ever met our little fighter ❤ feeling so blessed, he's been through hell and got a bit to go but he's doing ok, he's still on oxygen as lungs still need help but he's getting better slowly. Love you mate xx
Hello guys I'm in hospital positive for covid heart is having 30 ectopic beats a min since 7am they think I've got clots on my lungs my d dimer is 2000, devastated beyond words 😢
Hello guys nearly 2 year anniversary of
#longcovid
and have just caught it again for the third time, feeling worse than my second infection but not as bad as the first early days yet. please don't listen to the government, this virus is dangerous and causes life changing problems
My cousins son sadly passed away a week ago in his sleep, only 26 years old, he was hospitalised with covid 3 weeks prior for a week, they thought he took his own life but autopsy shown he died from a blood clot that travelled to his heart, causing cardiac arrest, this is so sad.
Hello everyone sorry I haven't been on here in a while, my baby boy was born with septis nearly 4 weeks ago and has been on ecmo in intensive care since, hes now doing ok and still in icu, but improving slowly each day
@PICH_AHCH
saved his life and I'm be forever thankful 🙏 💕
19 months since I caught 1st covid, still mainly housebound, unable to do basic daily task, still with multitude of symptoms. lost my business, friends, family, I have no life in comparison to before. Please find a treatment for this horrible debilitating illness
#TreatLongCovid
2 year covid anniversary today longest and worst 2 years of my life easily, thought I'd be sitting here recovered, instead debating going to ER as I cannot breathe very well and lungs are in severe pain feel like there flooded with water havent slept, 3rd infection not going well
Heres a first. I've been discharged from long covid therapy service because they said I'm too unwell to do what they offer and back to care of gp. Where else can we go? Its crazy this.
#LongCovid
Hello guys, just thought I'd update, this is brutal for some reason I'm in severe pain all over my body and throat is like razor wire, accompanied by a hr on waking of 135bpm that stayed with me from 6 to 9am, this strain doesn't feel weak to me I wasn't this bad with delta.
one of my best friends neice was taken into hospital yday very unwell, body and face swelling and legs had gone stiff and rigid, she is now in intensive card and on ventilation and dyalisis, doctors found she has covid and are fighting to reduce the inflammation, she's only 5.
My resting hr is 120 also akd I feel like I've been hot by a truck. Can't believe it they keep changing there mind but I'm getting send to cardiology now and blood thinners.
Its a strange feeling on twitter 2 years after covid, many of the original faces that had longcovid have faded away, I often wonder how they are all doing. Hopefully better, sadly replaced by many new faces all suffering the same fate even 2 years later its really sad to see.
Just attended a research meeting with King college London, they think they have identified autoantibodies which may be causing long covid symptoms the next stage is replicating in trials and then hopefully treatment🙏 was very informative got invited via my
#LongCovid
clinic
my gp is also my local area long covid specialist, she admitted to me today that before she herself had long covid, her and the other GPS in the practice thought ME wasn't real and overexagerrated, I've been going this surgery since I got m.e 16 years ago made me think wow.
#CFS
Hello everyone just to let you all know me and my Mrs are expecting our first baby. We are both really excited even though I'm nervous because of my condition, not sure how its happened tbh 🤣 but ill strive to become better and the best dad I can be. Wish you all the best.
Hello guys twitter isn't working properly here, I'm on cardiac ward and I'm doing ok I think my breathing is OK upto now but I feel really unwell having really high fevers and in severe pain all over my body I think I'm 4 days in. I'm having blood thinners but no doctors around
friend has covid, txt me saying "i can't handle
this no more its been 5 days the symptoms are horrendous cant wait to feel
normal" had to say imagine what 4 years of it feels like, it's torturous. same guy who minimised it last time because he had very mild case
#longcovid
Call doctors, wait 50 mins on hold, answer to be told no appointments left, ring back tomorrow, repeat daily. This is a madness in the uk what can be done to resolve it its utter madness. We cannot see a gp 🤯
Personally in my long covid journey in not much better than I was 2 and a half years ago tbh, my body cannot function normally, I cannot stand over 5 mins without severe painful burning legs and my brain feels like I'm having a stroke, get chest pain on any exertion even basic
Hello guys I'm still on the ward I'm coughing loads of stuff off my chest never happened last time and still feeling really unwell with crazy heart rates and fevers and pain, my Mrs is still quite unwell she has severe headaches she has been jabbed also. I pray we get better.
Ive waited 4 months to speak to my cardiologist, the phonecall lasted 3 mins 45 seconds....wow he couldn't wait to get rid of me, wasnt interested in me being reinfected and I demanded a second echo as gp said it would help me. Said I might have pots he will ring me in 12 months.
Long covid clinic called, can't offer anything else, said i was 3rd person to ask about spect VQ and microclots but shot me down, pushed graded exercise and then said clinic is being dissolved now and community team taking over, we really have ben lashed to the side its sad.
8 of my close friends have had omicron over Xmas, 2 have it now, luckily they all had it mild, scary thing is now they believe covid is no worse than a cold, this is gona become the thinking now, of many, how do us first and second wavers stand a chance of being listened to now?
Has anyone with a recent covid infection suffered severe lower chest pain and tightness, especially worse when lying flat? I haven't been able to sleep for 8 days now upright helps but only slightly its driving me mad only getting 2 hours sleep a night. This started in 3rd week.
Rememeber my friend who went the sauna to try and sweat out covid when he was 4 days infected, has now been in hospital twice since with severe abdominal pain, also been off work for 3 weeks, I tried to warn him ⚠️ this is what's happening to many others I bet also
#LongCovid
Bit despondent today my heart issues feel like they have gone back 2 years chest pains anxiety type issues palpatations, and severe raised hr on standing and exertion. This reinfection has set me back a lot im going to try and rest properly and hope it helps.
I've been referred to my local long covid/M.E fatigue clinic this is the full questionnaire I've been sent to diagnose how bad my illness is, doesn't even touch the sides of symptoms looks like a child's wrote it. Anyone has similar?
#COVID19
#LongCovid
Knock knock! Not you again. Fuck off and leave me alone. Feels mad to have caught this 3 times, so much for herd immunity eh? No testing from next week aswel its a madness. I know more infected now than ever. Be safe everyone.
one of my old friends has covid, he's on day 3, I txt him advice etc, his mum has alzemiers I told him to isolate etc, I asked him earlier how he was doing and he told me he had been the gym sauna to try sweat it out of him 😷🤮😳 will definitely infect others
#LongCovid
@debbie_seymour
I think illness can show peoples true colours and lack 0f empathy, I've experienced this also from my partner and family. Some really can't grasp you can be this ill and not hospitalised or getting worse, just stuck in limbo at home its horrendous.
It seems footballers are getting cardiac mris now even after mild covid infections and the issues are being found, myocarditis in these players a week after infection. Hopefully this will awaken more ppl to the reality of this awful disease.
Scan results back no clots!!! I'm made up, now get me out of here and back home feels like eternity, I only shared my experiences to help others not for attention. I know the ppl I call friends on here have helped each other so much in the last 18 months let's hop it continues
so....long covid clinic called today, I told nurse possible reinfection. she then said maybe its a cold or flu, then she said why do i take h1 and h2 still as mast cell theory has been debunked now and it was overexaggerated. only advice, pace and rest in bed. useless
#LongCovid
@NellyTells
she has Been extensively tested for everything known, that can cause these symptoms including muscle biopsies and blood cultures only covid has been found, keep your nonsense to yourself a kid is seriously ill in hospital your loonatic.
I've just sat in the garden for 10 mins in the sun and heat, it then raised my hr to 110 and I got mad periods of missed heartbeats and palpatations, and went very breathless, is this a common pots or dysautonomia response its horrendous and happens every time to me.
Hi guys how is everyone, been away for over 2 months, unfortunately having a lot of heart issues after covid, POTS, Svt episodes, tachycardia, and sinus arrhythmia and unfortunately very weak housebound atm. Seen a cardiologist awaiting further tests. Nearly.6 months now.
Does anyone have any tips or share similar issues with waking up after sleep? Every day I wake im really anxious and my body is aching from head to toe and I feel severely unwell, it usually improves slightly by the afternoon, happens every day now. Anyone similar?
#LongCovid
it still bewilders me that ppl with M.E
#CFS
and
#longcovid
who are in the moderate to severe category aren't classed as clinically vulnerable, how is that possible when we are so sick? We cannot donate blood for what reason? but they don't classify us as weakened immune system?
19 months, 2nd infection cant get out of bed last 2 days. Chest pains really struggling to breathe normally, body aching like a bad flu 😫 no energy to even stand up really this is horrendous. Will it ever end? certainly worsened since reinfection for me. Can do far less.
Hi guys thought I'd share more of my long covid clinic exp from today, seems now I'm on ivabradine they think I'm basically cured and now deconditioning is whats causing my remaining issues, truth is I'm just as bad as last year but not to them, maybe they need to show progress.
My message is simple guys wear a mask and get vaccinated you don't want this ever never mind a second time, it isn't a lot milder as ppl thought its horrendous, I just hope I'm over the worst and praying it doesn't give me many more long term issues than before.
Its actually concerning how many people think you can only have got
#longcovid
from the vaccine, I get messages every day, the media has made it this way I believe, millions was sick before the vaccine was even made available for a year or longer including myself and many others.
This covid has some party tricks for sure, randomly had syncope episodes yday and felt really weak, last few days my lower back/lungs are back to the worst again cannot lie flat at all and too weak to do anything, bed today i think 😔 grim this been 5 weeks since reinfection
want to say thanks to everyone on here for support over the last 19 months, no1 understands what we are going through and I mean no one, only if you suffer the hands of this illness can you understand it. So many kind ppl on here and only place I can share my thoughts so thanks.
Exactly the type of bullshit that has caused disregard for post viral illness for many years and it will continue, read the comments to see how the majority see it. no one has learnt anything in the last 3 and a half years. I'd love to know who promotes this tripe.
#LongCovid
The risk of contracting long COVID may have been exaggerated due to flawed research, leading to unnecessarily high levels of anxiety about suffering from it, a new study has suggested
Hello guys I have to stay in until a vq scan as my d dimer is still very high, this is the worst I've felt I'm so nauseus I've been sick 4 times and my stomach is burning its horrendous. I never had these symptoms last time.
The amount of ppl suffering reinfections is getting scary now, something needs to be done this is prominently caused by children going back to schools without any protection and the obsurb new policies. Its scandalous that nothing is being done about it. When when it change?
Day 7 since positive pcr, first time lft negative but lungs feel on fire similar thing happened in last infections also but only on 3rd week after stopping anticoagulants. Hoping it passes and doesn't worsen.
does anyone get weird
#longcovid
symptoms that don't fit with any criteria, one of mine is that I cannot lie on my left hand side still or I feel like I can't breathe very well and it causes immediate discomfort and palpatations, it resolves if I move positions its truly bizarre.
The strangest part of all this for me is that I have caught covid both times while being in the safety of my own home, both times brought in by other ppl whilst I was still adhering all the rules, sometimes it just doesn't seem fair does it.
heard good things about this book so purchased it to try and learn something and try a few protocols, maybe ebv and sars, I'll let everyone know how it goes
#longcovid
Hello guys, just a update from my appointment today, was a lot better than any others I've had upto now, gp thinks my main issues are caused by dysautonomia and mcas, pretty much what we know anyway, but she's starting on new meds for both mcas and pots also, fexafenadine 1/
@jwdaddy80
Its like groundhog day Justin pal every time you have to rebuild yourself them little gains it takes months, its really affecting me mentally, I've caught it 3 times in my own home which makes it even more unbelievable. No one is interested in helping still 2 years on.
Bad news guys Mrs has tested positive, can anyone offer any advice that been in similar situation? How long should we avoid contact etc? Proper gutted tbh I hope she recovers and doesn't get this 😔
Hello everyone not feeling good at all today sorry being going sick a lot temp is 39 energy really bad, keep having fevers and high heart rate. Hoping this will start to turn better not worse its like a nightmare again.
Its one of my oldest mates stag do today 30 of our friends are going to Spain for the weekend, Ive made peace with not being able to live normal life a while back, but you still cant numb the
sadness of not being able to participate and the memories we miss😢
#LongCovid
#MECFS
hello everyone, I'm pretty sure I've been reinfected over last week or two, palpatations, pots worse severe painful burning lungs again, fatigue a lot worsened, aching limbs, I now can't eat or drink atm because if blisters on my tongue all over, has this happend to anyone else
For a bit of context guys I was doing a little better could walk 10 mins stand a lot longer still with limitations but I'd say improving on the grand scheme, let's see what this does to me really hoping its mild as ppl claim and no set back or worsening of symptoms 🤞
Watched the panorama covid doc with my mum and dad today. my mum goes wow she's really got it bad that women compared to you, hard to hear knowing I think i am very similar or even worse at times. ppl close to you sometimes cant see it at all its disheartening.
#LongCovid
Its still happening this gaslighting, asked my cardiologist to send me to a pots specialist as he diagnosed me with autonomic dysfunction but get this random letter today. They just dismiss symptoms fed up with it left his name on aswel.
My long covid clinic has just rang after 16 months asking if I still require help after I refused physio treatment, refused? They told me I was tok unwell to participate in it, strange how medical ppl can change your notes to suit there criteria.
#COVID19
#LongCovid
I have really strange symptoms I haven't shared on here since covid, if I sit in a office chair my arms go numb after like 2 mins, and my eyesight starts to go blurry and weak, longer I stay worse it gets, doesn't happen on a sofa. Is this a postural thing or something else?
I also feel its affected my heart again as I'm getting constant pain and crazy heart rate of any movement. But could be immune response, on a positive note my Mrs is improving and my mum and sister are too.
Hi guys got all symptoms of a reinfection again, been 4 days hr massively increased, chest pain, palpatations, started severe sore throat and burning painful lower lungs, really weak and aching and 02 levels 94 average. Lft daily Still shows negative. Anyone experienced similar?
6 month covid anniversary today, wow what a shit illness, stuck on sofa because of pots symptoms, episodes of flushing, headaches, svt, tachycardia, numbness, list goes on, hoping everyone suffering better days ahead!
#LongCovid
Disgusted but not surprised about what the government have just announced today, its what they have wanted to do since it started, act like nothing is happening and carry on, millions disabled and thousands dead. They haven't got a moral compass between them. Despise them all.
Merry Xmas to all my friends on here and those who I interact with, you all really do deserve health and happiness, met some lovely people on here through the worst circumstances, lets hope for better for us all in the new year. All the best 🌲🫀🫁🧠👀🌲
Just had my covid clinic tele appt, really disappointing to be honest, nout offered apart from online breathing techniques and I've got to follow up with cardiologist when I can, i mentioned mcas and vascular and heart research all dismissed flatly. Didnt expect much but ....wow
@davidmichaels
there is lots that can help, just mainstream medical ignores most research its been nearly 4 years now there isn't any excuses anymore for not treating ppl after the event and doing regular checks.
Has anybody suffered a sudden relapse and worsening of symptoms without cause? I haven't pushed or done anything but lungs are burning badly again not great breathing and gone really weak and dizzy last 2 days been back to bed half days, after being stable for few months 😞
#covid
Does anybody have and tips or help in being stuck in flight/adrenaline type mode? my hr on waking this morning was 155 for 20mins and I've felt absolutely wired since shaking on edge with no relief, probably off this recent infection hasn't happened since infection 1 this 😢
A few ppl over last few days on here and other socials who have completed a marathon and a triathlon with supposed long covid, sorry but this can't be the same disease I've got and many others. Most would give anything to do normal everyday stuff, never mind extremes like that.
For longer than 4 hours and wake upto 15 times a night, wake with anxiety nearly every day and heart racing and feel hungover. Even with taking all supplements and vitamins a good day for me is feeling like I'm not dying while sitting on the sofa its truly horrendous illness.
Morning everyone, here is the list and prices for autoantibody testing for anyone interested, this is a more comprehensive list that Berlin cures but includes them, you must also get your blood centrifuged beforehand and sent off to 🇩🇪 hope you all doing well
#COVID
#LongCovid
This is the treatment we all deserved within 4 weeks of getting covid, some are still waiting for these tests 18 months on. Shows what being famous can get you even private healthcare would get you these tests in 1 day.
My day so far:
7am: Covid PCR test
9am: Haircut
Midday: Doctor
12.30pm: Blood tests.
2pm: Lung tests
3pm: ECG & ECHO
3.30pm: CT scan.
4pm: Mani-Pedi.
4.30pm: I need a drink (that I won't be able to taste).
Is it bad that when I see others who have just had mild covid say after 10 or so days omg that was the worst ever I hope I don't ever feel like that again. I feel a sense of envy that it didn't last that long for me and others instead turned into a living nightmare. Am I bad 🤔
Forgot to mention i had only 2 sets of bloods in a week in hospital, one was just 1 vial on the last day, was told there is a critical shortage of test tubes this is what these tories and brexit has bought us. Cant even get blood tests now.
Mrs been in bed all day with feeling crap shes got a temp and aching all over says her joints are hurting, she had a test earlier awaiting the results praying it isn't covid im more scared than her im hiding downstairs with all the windows open in the house 🤣🤣
This just came in the post for me, is this graded exercise research still being pumped out? I'm under a M.E/CFS specialist in Newcastle so it's came from them, or am I understanding it wrong? Can't believe this is still being funded if its what I think it is
#longcovid
#MECFS
Hi guys, got a long covid appt tomorrow which will be with a gp a specialist nurse and a physiotherapist. All for 45 mins each, they have asked me to write symptoms and questions can anyone help with questions they feel would benefit to ask? And also help describing symptoms too
hello guys, since I had the severe dizziness come on Me 6 weeks ago, I'm now not dizzy 24/7 bit now cannot walk because I go dizzy then.and my legs don't feel.strong enough and have a feeling like I'm on a boat unsteady ground, anyone experienced this?
#longcovid
I'll be honest the best doctors I've ever seen are female and it isn't even close, at hospitals and gp. I won't see any male doctors at my surgery, they always shut me down, women are more empathetic, intuitive, receptive, mindful, gracious and inquisitive. I have lots of respect
Its mad how we are being treated, example I've had zero respiratory testing since being unwell, my dad yday got a letter for a random full funtion lung test at local hospital. Hes in good health. The system is broken.
Tasks, if I push, even remotely for a minute the repercussions are horrendous, is this pem because it happens instantly for me not hours or days later like most research seem to indicate. Its simply like I haven't got enough power to make my body do daily tasks, I don't sleep
morning all, bit worried about latest infection damage, feels just as bad as the first out of 7 reinfections, having trouble standing, walking, numbness in arms when I stand up for over 2 mins, numb toes and fingers, severe breathless lying flat and exertion, winded feeling 1/2
my doctor called me today and said the xray in hospital
shows I've got hyperinflated lungs and not sure why or what can be done about it, anyone else had this diagnosis?
A 36-year-old woman in South Africa with HIV carried Covid for 216 days, during which Covid viruses accumulated 32 mutations - 13 to the spike protein and could evade immune response, scary this story.
Hello guys one thing I've noticed since my second bout of covid is that my pots hr has improved loads, it now stays in the 60s at rest previously 50s, and it rarely gets over 90 even when I first get up or walk around, I'm still very weak and its early days but strange findings.
@MoreauGabarain
I honespltpy don't know any information post discharge but I'm very doubtful in this country if anything with the blood was checked it never happened with me when I was in with covid.
Tough week to take this week my 2 best friends one was married in Greece yesterday and one has gone on his stag in ibiza today, was planned since before covid hard not 2 feel sad that I can't be there for them and miss out. Sometimes this can be the worst side of chronic illness.
wow forgot how bad heat intolerance was until today 😢😢 its only the start of it aswel, I'm like a flower that wilts away once it gets warmer 🙃 does anyone else feel similar? even in milder warmer days?
#longcovid
#MECFS
@soxxylady
its scary that it's not even considered attributed to the cause, even now with all the research and recent infection, even my cousin and my auntie blame what we all think has caused it yet no one puts it together there both heartbroken it's sad 😢
Hello guys had my scan before cant believe I reacted to it still feeling really sick dizzy and nauseous from it I really must have mcas. I'm awaiting results still praying they come soon I can't stay in another weekend in here. Palpatations and high heart rate back today too.
so about 10 days in now to this infection chest pains, severe jelly like legs, dizziness, Mrs got breathing issues and baby can't eat, keeps choking on his feeds and having coughing fits, fucking hate this virus so much, it effects everything and everyone it's so shit
#COVID19
Went out today to a christening seen family i haven't for 3 years and was mostly sat all day and out 4 hours or so, hr is now 120 and I've completely lost my voice for some reason. This illness is cruel even the most basic of activity destroys your body.
Has anyone else noticed ppl around them now, once they get ill that they have got a really severe cold, I've seen 4 in last week, took week off work 2 of them, no mention of something else it may be not even a consideration, has it disappeared now? No one cares again its madness.
Is platelet hyperactivity/dysfuntion the missing key for lots of chronic illness, m.e, long covid, dysautonomia. With effects on virtually every cell in the body? I think the evidence is becoming more clearer, it would make sense as it isnt looked for in routine testing.
Sergio ageuro has been taken to hospital during game for Barcelona after having chest pain breathing difficulty and high heart rate. He had covid 19 in February this year. Makes you wonder if its related for sure.
#ageuro
#COVID19