Covid for 4 weeks & still bed ridden. Anyone else had prolonged severe illness without hospitalization
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Hi,
I've had Covid19 for 4 weeks and if I had the energy I'd be tearing my hair out.
I've had 2 sets of prohylactic antibiotics to safeguard against bacterial infections, my temperature has been up and down but never higher than 38 the entire illness.
I've had severe neuropathy during the illness and some kind of night seizures accompanying the other more well publicised symptoms that mean my sleep is terrible also.
I went to hospital Day 14 after a week of seriously thinking I'm on death's door and my blood oxygen was good enough to be sent home for follow up at the Covid Hubs where they basically just take temperature, pulse and oxygen levels.
I was prescribed a 2nd course of antibiotics there as my temperature was still up and they are checking in on me every few days.
Meanwhile I am having one better day, then another terrible day, then a better day then a worse day..But 'better' is still bed ridden, just means I can breath well enough and not too dizzy to make myself my own cup of tea, have a shower and engage in some small talk with my family.
Everytime I have a good few hours I think, that must be me getting well now, but no, 4 weeks later and the last 24 hrs my breathlessness has been worse than it was for the previous 5 days..Am about ready to shoot myself.
Is there anyone else that's experienced being so ill with this virus outside of an ICU setting where it's carried on this long?
Even ICU patients are recovering in 3-6weeks .
Cannot understand why I'm not getting well yet.
I have no underlying health issues and I'm in my 30s.
I don't know if I still have Covid or if this is post viral inflammation and fatigue..There is no way of knowing as they are not testing community cases. Every doctor just says it's definitely Covid but I have no idea if I've passed the peak of the illness or if i should still be worried it could get worse.
Just feel it's going on forever.
Be great to know if there's any non hospital stories of people being sick, as in still unable to do a thing this length of time.
Thanks!
19 likes, 5383 replies
julie35925 Res35
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Hi All,
I am a bit late to the whole twitter thing but I have started folliwing Paul Garner who wrote the article in The Guardian, he is some sort of professor at Liverpool Medical uni and has the same issues as us . This is his 8th or 9th week. Lots of people, including Doctors, have replied to him with the same issues he is finding. They are now also in contact with other countries finding that they have the same issues. The negatives from this is that there is no treatment, it is supportive care and time, but the positive is it will get better. His tweets and article is raising awareness and gathering support for better information . A medical professor at Imperial College London has himself been suffering over 6 weeks, they are just wondering if it is caused by the bodies immune system being over responsive. The are LOTS of us so they will need to start recognising it soon. BUT we will get better
viv72815 julie35925
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that is good to hear julie. thankyou for sharing that x
stuart68c julie35925
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Thanks Julie, very interesting. Have to be honest and say that the thought of being like this for an unknown period of time fills me with fear. Have to hope that it isn't as bad as that.
jim90098 julie35925
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Julie,
Many thanks for posting the good news, you've raised my spirits no end.
Have a wonderful evening.
Jim.
dee89889 julie35925
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Hi Julie
Thanks for posting this, it is encouraging. However, I think I need to email this to my GP practice, whilst I appreciate there is no cure, care and help managing the symptoms would be a good step forward! It seems the approach by everyone's GPs varies as it appears some of them are doing all possible to help.
I agree with Stuart that the unknown timescale is worrying plus the fact there is no confirmation whether this is post-viral or not. However, the fact it's getting 'out there' is a bonus.
Hope everyone is doing ok and here's hoping we all have a better day tomorrow
Res35 julie35925
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Yes, thank god for Paul Garner.
I follow him on Twitter and his article has changed the landscape. He has enough clout to be listened to by the people who need to hear.
I am now day 7 of feeling...actually quite good!
I am now 8 weeks in and this week I have truly noticed big improvements.
Today i was able to walk all the way to my child school, which even less than 2 weeks ago I was worried I was not going to be able to do.
Have been using the same pacing method I previously used for Chronic fatigue syndrome.
So far 7 days without a relapse.
I still have a little coughing and tired still of course but the breathlessness is def subsiding and I generally feel more and more like me again..Finally!
Long may it continue!
mkqq Res35
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Hi just wondering if anyone is experiencing a runny nose and/or sneezing upon exertion of energy?
I find that if when I do some light exercise or exert energy another way (i.e. walking, talking for a while etc....) it can sometimes bring on a slight runny nose and/or sneezing.
I'm wondering if this is a post viral fatigue syndrome or just seasonal allergies.
stuart68c mkqq
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I can't say I have noticed runny nose but I do get a stream of liquid pouring down the back of my throat directly from my nasal cavities. It's clear and a little bit thick. I have been using Sterimar saline spray to try and keep things clean up there, plus Beconase.
dawn84999 Res35
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Hi,
So glad I'm not alone in the time it's taking to recover.
I'm a carer working in a care home and was nursing confirmed cases.
I first became unwell 4 weeks ago with all symptoms ,fever,cough,very hoarse voice,chills .Lost my taste and smell on day 5 for about 6/7 days.Unfortunately I couldn't get to the drive in test centre at the 02 but 2 weeks in and still feeling unwell I managed to get a home test kit but because of time it arrived and having to then arrange for a courier to then collect my test wasn't taken till day 17 it came back positive.
My symptoms now are fatigue mainly and still getting breathless when climbing stairs or just doing a little light housework.I went out for my first walk today as i didn't wake up feeling like i have a hangover like i normally do, it was just a short walk 15 mins it made me feel quite light headed ,legs a bit shakey ,my colour drained ,breathing heavy and I really needed to rest after.
It's just been such a roller coaster mentally and physically .I also had to phone 111 on day 16 I was just so cold couldn't stop shaking breathing very fast ,they sent an ambulance I was tachycardic with high blood pressure but my oxygen levels were normal so I didn't need to go into hospital and they said it was a panic attack.
Just so done with it now but its comforting to know that I'm not the only one whose taking time to recover.
Sorry for the long post but nice to talk about it to those that understand.
Just to add I've had a few other odd symptoms like musical tinnitus and smelling cigarette smoke that isn't there which was so strong it made me nauseous.
Lulu2020 dawn84999
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You are definitely not alone Dawn! Sounds like you are making progress. I too have tinnitus but thought I was imagining it until others also mentioned it. i think the analogy to a hangover is right even when symptoms not too bad feel very woolly and fuzzy.
Take it easy and make sure you rest when you can it definitely makes a difference. I am coming up to 8 weeks generally having better days but had a bad day yesterday so makes you worry.
On a separate note thank you so much for the selfless role you have played looking after people's loved ones in care homes - my mum is in a care home being well looked after and I am so grateful and can't thank the carers enough. Wishing you better soonx
dawn84999 Lulu2020
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Ahh bless you and thank you .
Glad to hear your mum is be well cared for and that you're having better days than bad now.
Stay strong and hope you fully recover soon x
DilP Res35
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Just wanted to give everyone an update if thats ok
So last weekend 5 days after finishing my second lot antibiotics, my symptoms appeared to be getting worse again with Saturday literally no energy but slept 17 out of 24 hours. Sunday i had much more strength but the sensations/tightness in upper back started to return, to such an extent i thought here we go again - doctors/local support clinic for a third lot of antibiotics request on Monday but this time will demand a chest xray ....
But....Monday morning woke up...and literally for first time in months i felt something like 100% , sort of half awake body check for the first minute or two in the morning was performed when awaking....limbs felt at full strength, and more importantly absolutely no tightness, no hurt in taking a deep breath, and no sensations ...wow was that a relief!! We all know our body the best and this felt like a giant leap forward.
So after 10 weeks and since Monday morning i have not worsened. Indeed i have had my first two outdoor walks, and only impact was that i was struggling a bit to get a full breath by the end, but during them no problem whatsoever....but god i would take that every time now.
Remember i was very unfit before, so for me i can cope with this 'current state' more, but suspect the fitter you are the harder it maybe to get you mind to believe you are where you were before physically this s**t happened.
I still know i'm not 100% but i would say now 95% (and have been scarred like any long term illness to accept this thing can potentially return - that fear maybe with me for a few weeks at least yet). I am calling the doctors on Monday and sort of want to tell them where we are, and would like when time and resources allow some form of lung check as its still where i think they should be, but also is there any lasting damage?
I still know that it still baby steps in not going mad with any excessive exertions, but i fell like right now i've taken a massive step forward,
So please, please, please, and i know this is so easy to say to those in a dark patch at the moment with their ailments, DO NOT DESPAIR......you are going to get better!, but perhaps accept it will take time and patience, but those baby steps when you feel better will increase and become more frequent and yes it will be two steps forward and then one step back, but you will get there.
For me personally, i'm looking back now and i'm thinking i have been lucky - male, over 50, ex smoker and now vaper, obese, was very borderline diabetic just before...it obviously could have been much worse (and 10 weeks in my life is now just one of those things). Its the 'not' knowing the condition and the length of time to recover that can be mentally crippling, and this forum has in part undoubtedly helped and both fronts.
I will be 'tuning' in on here from time to time, and so wish that everyone posting gets well as soon as possible.
viv72815 DilP
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thats a lovely update to wake up to. im sure that it will be onwards and upwards from now on. thankyou
stuart68c DilP
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Thanks for your update. I was so down and scared yesterday that waking up to your post has been like waking up to a beautiful hot sunny morning, overlooking a deep blue sea, with birds singing and everyone happy. It fills me with positivity. Thank you.
Lulu2020 DilP
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So pleased to hear this!! Am so fed up with the half awake body assessments every morning! Will be so good to wake up and just feel "normal" and not have to worry about oxygen levels and heart rates - who ever thought about these a few weeks back?!!
Thank you for sharing and wishing you the very best. x
gemma26100 DilP
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That's great to know, really positive. You do feel many times, that there is no light at the end of the tunnel and you do have to find some inner strength to say this will go!
I hope this happens for us all real soon!
jim90098 DilP
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A very good morning to you DiLP,
What wonderful news!
Congratulations to you!
Thank you for sharing the news and Im sure you will have raised everyones spirits immeasurably.
Jim.
jim90098
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Morning guys,
Advice please on sleeping positions.
Having been ill for the past 44 days Ive managed to sleep on my front but last night I seemed not to be able to calm my breathing down enough to drop off.
I ended up sleeping on my sides with two pillows under my head.
Jim.
joanne82424 DilP
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Thank you. That's great news! It really gives us all hope 😃
joanne82424 jim90098
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I'm still struggling with sleeping positions, Jim
I have to start off sitting up as my nose keeps blocking up. I usually end up lying down on my back propped up on pillows.
Oh well, at least I usually get a fairly good night's sleep now 😃
susan48029 DilP
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That's good to hear, I've been a little better been out in car, walked abit yesterday, sit in garden but still get tired after doing stuff and breathing still funny at times, I'm in my 9th week now, let's hope they can find a way to help us all very soon ❤️
jim90098 joanne82424
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Thank you Joanne.
viv72815 jim90098
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hi jim
personally i have never been able to sleep on my front it has always made my heart race. i sleep on which ever side feels comfy. i have 2 flattish pillows. i am on day 49 jim and i am feeling ok at the moment. i sometimes put a pillow lengthways by the siide of me to rest my arm on.
steph88359 DilP
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Hi DilP I'm so happy for you finally turning a corner. It just makes you thankful for everything we took for granted before this horrid virus !! Please please can you keep us that are still struggling updated on your situation. I too am in my 50's with an underactive thyroid, maybe a stone over my ideal weight and wonder if that's a factor ? My symptoms today feel like a severe head cold. Blocked ears , head feeling like it's going to explode and nose feeling very blocked. Oilbas is giving me some relief but feeling like there's a build up of pressure in my sinuses. Hope you all have the best weekend you can in the circumstances.
jim90098 viv72815
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Hi Viv,
Thank you for the information.
How long have you got in with this little sugar, as Gary calls it?
jim90098 steph88359
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Morning Steph,
Hope your day improves!
Am I right in thinking your around day 44 like me?
jim90098 stuart68c
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Morning Stuart,
You painted a lovely picture there.
A quick question, what breathing exercises do you do and how often?
Hope you have a good day.
Jim.
viv72815 jim90098
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im 49 days today jim, with a positive test result at 38 days which threw me into complete panic. i dont think that helped. i am 57 with an underactive thyroid and type 2 diabeties. i carry about 18lbs of extra weight. not sure about that now lol. my main symptom has been the burning sensation in my back for the last couple of weeks. makes me feel light headed when i sit up. no runny nose or mucus but the toilet situation has not been good sorry to lower the tone. today is quite good up till now as was last night so fingers crossed. hope your day is good for you jim x
stuart68c jim90098
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Morning Jim. First things first, I feel much brighter and better today after yesterday's bad one. So that's a positive.
For sleeping I lie on my side (whichever one feels less congested) kind of sloping forward supported by a pillow if that makes sense, so a bit like a 45 degree angle towards the mattress. I put a pillow between my legs for extra comfort. My head is on one pillow so I am quite flat.
I find my cough, and breathlessness get worse if I lie on my back to sleep.
For breathing I lie on my back and do 5 deep breaths through my stomach and try to inflate all my lungs too. I hold each deep breath for about 5 seconds. Then let go slowly breathing through my nose. Then I do a sixth breath and on release I do a sort of huffing cough action three times (like you're trying to steam up a window with breath) which enables me to spit out a bit of whitish fluid. Then I lie on my front for 10 minutes breathing deeply. I think I saw this technique explained on YouTube or reddit. I'm sure you'll find it online if you need more detail.
Hope it helps. I also find it good for relaxing any anxiety issues.
All the best Jim. Keep getting well.
stuart68c steph88359
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Hi Steph, I get sinus and nasal problems too. I find Sterimar saline spray helps to keep my nose lubricated and helps with congestion. I also use Beconase spray. It's a steroid available over the counter and that helps too.
Occasionally I put my head over a bowl of hot water with a dollop of Vick in it. And breathe it in.
Hope this is of some use and you feel better soon.
Lulu2020 jim90098
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Hi Jim
I start off on left side then notice I can feel heart and if it is racing it freaks me out so then settle on right side with just a regular pillow - do sometimes do a stint on my front with cactus arms which feels like it opens the chest up. One thing I am convinced off after all this time a good night's sleep makes such a big difference to how you feel next day. Thursday night only slept few hours and felt absolutely rubbish, exhausted and anxious all day yesterday, last night slept for 10 hours and feel so much better - not just physically but mentally. I think a lot of this illness is about keeping mentally in tact - just lately I have been less anxious but every now and again, as it did Thursday when I spoke to doctor, the anxiety comes back and with that the racing heart and general feeling of doom. I think a warm drink helps before bed - obviously caffeine free, Peppermint tea or hot lemon/honey.
Really hope you are feeling better I remember you were having such a bad time not too long ago - stay positive and write off the days which are not good and re-set yourself to start the next day with hope and positivity (I know easier said than done but it does make a difference if you can). Thinking of everyone and sending positive thoughts x
jim90098 Lulu2020
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Lulu,
Thank you for your kind reply.
Everyone has been wonderful on here.
Jim.
jim90098 stuart68c
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Cheers Stuart.
Today hasnt been too bad.
Have a good night.
steph88359 stuart68c
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Hi Stuart, I'll defo be trying the saline spray as i've used it before. It's funny as the congestion comes and goes just like the other symptoms !! Today's been not too bad , hope yours is ok too.
joanne82424 steph88359
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I've had the heavy cold feeling too, these last few days, Steph, and felt very dehydrated today, the worst I've had in the daytime
I find saline spray good for nose, I've tried sniffing olbas oil too but sometimes it stings, so not sure if that's good for it.
It seems to have cleared a bit after clearing my chest over the day, but I expect it'll be back.
Hope you get relief from it soon
stuart68c steph88359
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Same for me Steph. Comes and goes. Glad you had a better day, so have I 😃
DilP susan48029
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To everyone who wished me the best.......so truly humbling.
I just wish i could share the 'improvement' with each and every one of you - even if it was a day of relief.
For me first day in a car out for me today for two months...very weird..
I will say as soon as i got back felt very tired (in a nice way).
So i'll drop in on here from time to time and will be praying for you all, wishing you get some strength to fight all the fights you are fighting.
You will get back to feeling some form of 'consistent' physical normality soon!
Res35 DilP
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So glad to hear this!
I too am starting to get a lot better.
You are so right about the stress of not knowing.