Can anyone shed any light on fatigue? Two years now since I was in icu on a ventilator/ trachiotomy and on ECMO. I was sedated from 30/12/19 until 28/1/20. But in icu 18/12/19 to 9/2/20. Not covid related. But with acute respiratory failure./ pneumonia.
I am still feeling weak and lethargic as well as tired all the time! Is this normal?
X
Short answer is yes - it’s very usual to feel exhausted.Although there is a lot of talk about long Covid - it’s older cousin was Post Intensive Care Syndrome - or PICS
I am afraid it seems to be “normal” as I have the exact same issue, was on Ecmo from roughly 3 dec 2020 to early 2021, and am still utterly exhausted.By mid afternoons I struggle to get out a chair, and am ready for bed by 630pm.
It is not just muscles but my hip joints and back too that get weak easily.
There was a good article in the New York Times at the weekend : How Long Covid Exhausts The Body.
It could also have wider relevance re: pneumonia and general post-ICU debilitation, as it looked at oxygen issues, and ongoing respiratory and circulatory after-effects.
Yeah, all my joints ache and are stiff! And my right hip is sore which I have put down to nerve damage in that leg caused by the ECMO cannula. A small price to pay though. I hope you recover soon.
Thank you, and you too. My ICU specialist now also puts the nerve damage/dropped foot in my right leg down to the Ecmo groin cannula.It was taken out when they thought I was ok and ready to be decannulated, but had to then be speedily reinserted in the high-blood-pressure emergency that followed.
I will soon have been home for a year, and have been informed that issues such as fatigue, joint pain, cognitive fog etc, could last for two years or more.
But great to be alive and kicking (in one foot anyway!)
Good to haveca sense of humour too after such a traumatic journey! If we don't laugh, we cry!
As the others have said, probably yes. I was in hospital at roughly the same time as you. As a result my stay I now have pulmonary fibrosis and sleep apnoea these were diagnosed because I also have icu cough and after 12 months I had X-rays and scans to confirm it wasn’t cancer. So at night I use a CPAP machine to help with breathing. Before christmas’21 I had a chest infection which knocked me for six and had to start the recovery process all over again.
hi
I am out of ICU 22 months now. For me fatigue is when you are so exhausted that you cannot get off the sofa, cannot mentally process anything etc. I have had a number of (to be expected) improvements and relapses over the last 22 months. Right now I I am feeling better, which looks like being able to do physical and mental tasks provided I rest in between. It has taken a long time to be able to get into both the mental discipline and headspace to appropriately deal with my fatigue. My routine is now that I try and do the same exercise routines (mainly walking) regardless of whether I feel great or awful. The same applies to resting. Please see attached a link to an article about fatigue. Pls ignore the fact it is covid related- fatigue is fatigue and i think the process to managing it is very similar
One final thing. Look to manage your fatigue, not to fix it. Good luck! Pete
I think it is very common to anyone who has been in ICU. Your body has experienced a profound event and it will take some time to recover...there is no specific time frame. I was descibed as "extremely crytically ill" in a coma in ICU for a long time in 2015 with H1N1 (both lungs badly compromised with pnuemonia, sepsis, collapsed lungs, major organ failure) and have days when I feel exhausted, have flashbacks, struggle to sleep etc.
You are not alone!
Thanks for you response. I was just wondering if it were normal to still feel so 'washed out' after 2 years.
It really is normal. It does get better! I still have days when I feel totally washed out but they have become less.
Thanks for the positive input. I used to be an 'up and out' in the morning. But now I'm sluggish in the morning for a good hour or so. And used to love a night out! Now if I go out for the evening, I'm wanting to go home to sleep by 9pm although I now try and push it to a little later. It's like a part of me did die and I miss that part of me!
You will get it back, maybe you won't be able to go out every night if that was what you used to do bt then I don't think many people can at the moment as we have all just got out of the habit of going out... lockdown hasn't helped as you won't have been able to build up your stamina by staying out for longer.
Not an every night out lol. At 58, I'd be happy to do as I did summer of 2019 and before. As that's when i started to get poorly. I used to regularly go out most Friday and Saturday nights and very out late in the evenings. But at the moment, I'm tired by 9pm or 10 at latest. I shouldn't grumble, I'm alive afterall, and very grateful for that. But im just not who I used to be.
I was in ICU 6 weeks (3 on ECMO) SARF (severe acute respiratory failure) from flu, pneumonia early 2019, so a year earlier than you and still get v tired, but find it hard to sleep! I am 50 years old now, so was putting a lot of it down to menopause, but it is a combination of all things that have happened since being ill and stresses from before. So I sleep if I can during the day, I do work part time. Physically I recovered quite quickly, but I find everything in normal life much more emotionally and mentally draining. Try and accept your limitations and be kind to yourself-I need to follow that advice also! I found counselling helped. I am going to look up PICS now.
Even over 3 years on I find it helps to know there are other people who feel the same as me. Take care everyone.
Thanks, it is definitely reassuring to hear it's not just me! I have started to feel I should be 'over it'by now and feel bit of a fraud for still feeling weak and tired .
I went threw very similar, but was covid related, 6 weeks in coma, 23 days on ecmo. But I was only August last year got out the hospital 1st October. Was told 18/24 months for recovery, which scares me. I also feel very tired.
I was wondering if you have had any issues with joint pain ?? Mine had become almost unbearable
Yes! I have joint pain and stiffness, none of which I had before I got poorly. I'm now hearing this as well as the tiredness is all normal after being so seriously ill but I certainly wasn't aware that it went on for so long and could very well last a lot longer. But although it's a nuisance, it's a small price to pay compared to what could have happened!
Thanks for your reply, very helpful to no it's sadly a normal process. Yeah I was told different time scales, found it hard to take it all in. Still do tbh. Yeah u are correct take the positives, maybe just talk to my Dr for better pain management just now. And like you say could be alot worse
Memory Loss after COVID. 
If you are stressed will this make pneumonia worse if you have it? 
Swallowing difficulties after long stay in ICU including incubation and tracheostomy 
