Covid pneumonia

[Nala8573]

Hi in November 2021 I was rushed into hospital and ventilated with covid pneumonia I’m still having trouble sleeping and the flash backs are horrendous, I’m suffering with muscle aches in my knees legs and ankles and hair loss, my voice is still husky and quiet. Has anyone else experienced this

[Rhyl1 Partner Moderator ICUsteps]

What you are describing is very common after being in ICU, not just with Covid. It’s called post intensive care syndrome or PICS. You can find information about it at icusteps.org/information. The Critical Care Support Network runs weekly support groups on zoom on Thursday evening at 7:30 pm, see cc-sn.org/. If you are interested in speaking to other patients then drop me an email to [e-mail] and I’ll get the organisers to contact you.

[Offcut]

Sorry to hear of your issues. I was in ICU 32 days in 2008 with respiratory failure. I lost 3 stone and suffer your symptoms. I found I had to get out of bed as soon as I woke no matter what time that was. But that ended however I do still have trouble sleeping to this day. I found ICUsteps great and helped no end but I was forgotten at my GP practice and more or less told to "Get on with it and feel lucky I survived?" I have a complicated history of comorbidities and my treatment at my GP practice has improved due to specialists' intervention. Long Covid is a problem for some and may need to be asking the question if you, have it?

Be Well

[Back_to_reality]

How long were you in the ICU? I have read that a good guideline is one month to recover from one week in the ICU, and that was pretty much right for me. The word "recover" is vague though. I was in my coma for three weeks and it did take three months to get my strength back, but I did have to push myself, a little at a time. I had a few knock-backs: a urinary infection a couple of weeks after I came out, and then I got covid although that wasn't too bad for me.

You're dealing with two things: the covid and the ICU. I can't say a lot about the covid as I was over it in five weeks and it had nothing to do with the coma for me, but the ICU recovery does take time, and it's different for everyone of course. I had to push myself, physically and mentally. The physical bit was pretty straightforward, even if it was difficult at first. In the hospital it was managing to walk around the ward. Then at home it was walking round the block, then getting a bit further, then after a few weeks I felt able to drive, then able to cycle short distances. Don't overdo it, as you don't want to hurt yourself, but even though it's difficult, even the smallest thing can give you a sense of achievement which makes you more positive, which helps with the mental side of things.

Talking of which, time is a healer, but again you have to push yourself. As I've said in other posts here, it's difficult for one person to guide another; our brains are complex and we're all different. While we've all had horrific experiences they won't all be the same. For me I had to replay the things I had seen, difficult as that was. Many sleepless nights. Seeing my brother, and my kids, all of whom I thought were dead was a big thing for me. I could consciously feel an improvement and while I was still suspicious, the effect that had for me made me realise I needed to do this for the other things I had seen and experienced.

The flashbacks were horrific at first but if you try and put them out your mind, they just come back again. You have to work out why you got those thoughts in the first place and I found it was a combination of distorting what I had actually seen (stuff in a hospital) with my own insecurities and one or two bad experiences in the past. It was a long path for me but I found that once I started piecing things together it gave me confidence and made me a whole lot less miserable. In the first month or two I would occasionally remember something that I hadn't remembered previously, usually while lying in bed and it would completely freak me out. I would have to get out of bed and sit up for a few hours trying to work through it. This often took days and in a lot of cases it took months to get there. It's really difficult to explain, mainly because a lot of it didn't make sense but you probably understand that.

Of course, this might not work for you, but I think the key is getting yourself back to the real world and accepting that those things you saw were experiences even if they weren't real.

The muscle aches might have something to do with the intensive care. I did get sore, mainly because I was weak, but the covid probably has a lot to do with that. I can't comment on the hair loss as I'm a man in my forties and I'm pretty used to that anyway.....

[Nala8573 in reply to Back_to_reality]

I was in a coma for just under 2 weeks in November I had an icu follow up yesterday and they said physically apart from the shortness of breathe and the muscle aches I’m doing quite well, he said over all I’ve done quite well to be recovering As fast as I am but I can’t help feeling the way I do and most of it is guilt and flashbacks

[Back_to_reality in reply to Nala8573]

Ah yes, the guilt. That was the worst part. In my nightmare it was a chain of interlinked events and a lot of people getting killed, and it was all my fault. This included my elder daughter's entire primary school class, and both my kids. My dead parents and grandmother were within the ward ceiling, discussing how much they never liked me anyway and how they'd never forgive me for them dying. That's the tip of the iceberg.

Of course, in reality they were all worried sick about me. I suspect my wife, who had been sitting by my bed, had mentioned how worried they were and my mind had twisted that to them having died and that somehow being my fault.

The guilt, like the rest of the horrible stuff, does go away but even after you understand it all you still feel pretty down about it, or at least I did. But you do have to deal with it. It's a long process and a strange feeling having to put your mind back together again (or at least that's how I think of it). I know I will never be the same again, but I'm fine with that. I'm alive, which is a good thing to start with, I'm mostly back to normal, and I've got some stories to tell.

Another thing I've noticed is while you will get various levels of sympathy from people, you're not going to get empathy. Nobody can imagine what you've been through. Others like us who have been through ICU will be able to understand, but we all went through what our minds came up with, and they're not the same.

I was in for three weeks back in June by the way. I don't get flashbacks any more and I mostly sleep OK now. Yes, I still think about it, although it's just the occasional thing, as I'm just getting on with my life now. I couldn't say the same back in October which is probably where you are now.

It does get better. A lot better.

[Ccie]

Hi NalaIm sorry to hear of these on going symptoms. I got the shivers when i read your post as it was what happened to me.

I also has vovid pneumonia, put into a coma for 15 days. I had terrible symptoms after coming home, uncontrollable shaking, feeling freezing cold especially after eating, weakness, sleeplessness, hair loss, muscle deterioration, breathlessness even to just sit up out of bed.

To help, i had to push myself.

I was told by the physio to extend myself to increase the endurance level of my body.

Walk a little further around the house.

Limit the day naps to no more than 45 minutes only once in the day.

The nightmares are a very difficult one, speaking about them to a good listener is best

Now the hair loss....my hair was so long, past my knees for most of my life...to see "piles" laying around the house, brushing it out and my pillow covered with it really took its toll on my mental state. Most women pride themselves on how "feminine" they look be ause of their hair. Well, i thought it was the weight of my hair that was making it fall out more, so, decided to cut it elbow length. My hair still fell out. Its been about 4 months now. Im taking biotin for it, as well as for my aged skin and terrible neils, both finger and toe nails. I feel my hair on my head feels softer and "spongey". Looks like i have new hair growth finally. Changed my diet completely. More fruit, less fatty foods. I pushed myself to exercise..exercise bike...walking outside, extending my area ever so slightly every day.

My determination to get better paid off. Ive just started back at work this week on very reduced hours, but, its a start.

Having determination and hard work on my behalf, according to my lung professor, has been the key to my rapid recovery.

Im asthmatic as i have bee from about 10 years old.

Im 57, 5 children, 1 grandchild, im an educator at an independent school,

Think positive, believe in yourself. You CAN do it. It takes time.

Overall its been 6 months for me to recover to this stage.

We are blessed to be alive. Im ever so grateful to get this 2nd go at life and to be of support to people like you.

Mental health plays a huge part in our recovery. I pray for you to get better gradually and enjoy your life.

[Nala8573 in reply to Ccie]

Thank you so much for your message it’s nice to speak to someone that’s been in such a bad situation I was ventilated for just under 2 weeks I’m really trying with my fruits and veggies ect the walking is hard I have long covid and my knees and ankles hurt like mad most days, today I’ve manage to cut my grass in my back garden which has been amazing and I’m trying to go on long walks. Thank you so much for your advice and letting me know how you have got on I’ve followed you please keep in touch xx

[Kit10]

Hello NalàI didn't have covid, but my voice has been damaged, I assume by having tubes down my throat, plus muscle wasting.. I managed to have some sessions with a speech and language therapist, who got me doing breathing, tongue and voice exercises. My voice is still not back to normal but it is better than it was, and I think it will get better over time.

Speech and Language therapists seem to mostly work with people who have problems talking at all, or cant swallow. A drama or singing coach might have been more useful.

[Nala8573]

Thank you I’m still waiting for my doctors appointment to be seen and then transferred over to the speak and language Everything's just getting on top of me at the moment

[Sepsur]

Yes, telogen effluvium is common after the trauma of critical illness, 6-9 months later my hair had grown back - whiter but softer.

Sleep was terrible for a time. Everything improves slowly but surely

[slimsimmons1984]

I was intubated for 10 days back I december 2020. Experienced everything you mentioned.Everything slowly got better for apart from sleep. I'm still receiving counselling now.

Just to prewarn you I experienced a big dip around the first anniversary where I felt worse for about 2 months, and like things were getting worse. apparantly its pretty normal to do so.

My hair really improved after about 6 months. Nails had ridges and were flimsy for a few months also.

I'm finding councilung with the local me tal health team beneficial, they talk and ask things that my family would probably avoid talking about,

I had the same voice trouble and find about every 5 weeks my voice turns a bit husky a d sometimes lose it a little.

I've struggled with foggy mind and poor memory since but I feel now I'm mostly on top of that.

So if you still struggle with any of the issues after months don't worry it's normal.

[Nala8573 in reply to slimsimmons1984]

Thank you so much x

[Hidden]

I was in ICU initially for an infection and sepsis for a 4 week period and then contracted Covid on a general ward and returned to UCU for 10 weeks. I had the full effect with sedation, ventilator, and then tracheotomy. It took weeks to get back on my feet and finally returned home after 7 months. I still have mobility issues over a year later, and have permanent kidney disease and diabetes type 2. I have fatigue and some breathlessness. Its a long haul.

[qmcsurvivor]

Hi, another ICU ventilated Covid survivor here, and like all of our stories there are so many similarities that would be difficult for people to have not experienced this to understand which is why I feel supported reading others messages in here every so often, I think it is also a lonely place being an ICU survivor. Flashbacks still here after 15 months and physical symptoms which are both similar and different to others experiences remain, flash backs may have diminished but have a good cry every so often as it helps even though I am supposed to be the 'Macho Male'

I was admitted via resuscitation room and went to ICU that day 23/12/20 yet have no real memory of this until I asked a nurse if I had missed Christmas her reply was a smile as she said, 'yes and New Year' so feel as though I lost a few weeks with no proper memory just the hidden memories of delirium.

Recovery can be slow with ups and downs so pace yourself.

[natswright]

I'm 13 months from being on the High Dependency ward, while I was not ventilated, I was on CPAP. I still have muscle aches, especially legs and back. I was bedridden for 3 months though.

I'm far more mobile today and have documented my recovery on here, so feel free to check out my profile

[Edenderry]

Hi I'm 1 year 9 months on from having covid pnuemonia 6 weeks on trachea ventilation coma still having flashbacks,leg s spasms muscle pains very restless at night ,also still coughing alot shortness of breath and memory loss and forgetfulness ,but on the up side still here with my family which doctors said I wouldn't and shouldn't be so keep strong keep going good luck x

[CLM68]

I was in a coma in ICU for 3 weeks with H1N1 and ended up with a host of linked problems...sepsis, PE, kidney failure...the list goes on! I found my hair started to fall out in handfuls about 8 weeks after I left hospital and continued for about 3 months with the hair loss gradually getting less severe. I found out it was very common, and I was also warned that my nails would also be thinner where they had been growing over the duration of my illness. The flashbacks were intense and mainly around the pain of having the dialysis tubes inserted and stitched in place as we discovered that local anaesthetic no longer worked for me! I learnt not to get too tired and had a Kindle bought for me so that when I did wake-up I could read something to distract my thoughts. I also had an entire library of films I could watch that was put together for me. I also had someone come to our house every day to take me for walks as I was too unstable to walk by myself

My GP and consultants were really great. The ICU team arranged for specific ICU therapy for me to help me through the trauma of what happened, even arranging for me to go back to the ICU so that I could work out what was real and what had been hallucinations. That was really useful as they also went through some of the kit they had used as I had so many scars on my wrists, neck, arms and legs that it was helpful to find out why!

The flashbacks do get better, but it does take time. My voice still isn't what it was from a singing point of view, but my speaking voice is back to normal - I was intubated for 3 weeks.

IT DOES GET BETTER! Try and get some therapy, it really does help.

[Ccie]

HiYes all very normal. Same happened to me 1 year ago. Be kind to yourself, rest up, eat well, healthy foods, drink lots of water. Take it easy, start with small steps, dont stress about things, you are number 1 atm and need to recover with time.

I had all the same as you and couldn't walk when i got home.

Take as much help as you can this will help in your quicker recovery.

[Ccie in reply to Ccie]

Oh 1 more thing, even after q year, i cant raise the level of my voice as i used to. Makes it difficult working in the school environment.