Critical illness myopathy?

Hi, can someone please help me understand this?

My mom had a bad asthma attack, 15 days ago. She has been sedated with fentanyl and propofol. Also she was breathimg over the vent and they had to paralyze her muscles for 5 days.. So with that being said on Day 6 they removed the paralytic. On day 13 she was completely weaned off the propofol. And as of yesterday, the turned her fentanyl from 200 mg to 50mg. She started to wake up because her eyes follow me and blink.. And she was crying but couldnt talk because of the vent... Anyway today is a new day and doctors are concerned that she may have bad nerve damage or in other words critical illness myopathy. Is this something my mom can recover from? Im very sad, and scared.. I just want my mom :(

6 Replies

  • Please stay strong and brave my dad was in a sedated coma for 3 weeks and they told us he had a brain injury now 6 weeks down the line he his sitting up in bed eating normal food and talking he has a little memory loss bit nothing as bad as we ever thought so be positive pray and stay strong keep talking to her holding her hand

    Good luck x

  • It is now 5 weeks since my wife has woken from 2 weeks under. She still can't move her arms and only a few fingers on one hand. Both feet have gone numb. This will be her first full week of physiotherapy and yesterday she sat in a chair for only the 4th time in 7 weeks. No one will tell me if she will gain the full use of her limbs they simply don't know. Scary times!

  • I'm so, so sorry to read that you're going through this. Please take comfort from the fact she is waking up.

    I don't remember waking up but I do remember in my dreams (nightmares) being extremely distressed and apparently this morphed into reality for my husband and family when I started to wake up. I too was ventilated but have no memory of this, and I was screaming at my husband calling him a stupid idiot and various other words not suitable for this site. I was crying because he couldn't understand me, I was trying to rip my tube out and was restrained by 3 members of staff. I have some recollection of this as it became a part of my nightmare but it was at this point, the senior staff nurse asked my visitors to be restricted to close family members only. After all, I wouldn't want my friends to see me in this state, however I also wouldn't want my family to have had to see me in that state either.

    Please just reassure her that she is safe, that she is in intensive care but she is awake, that you love her very much and you are so happy to see her.

    We can't predict how she will recover and at what pace, it's still incredibly early days. All I can say is she may well have had very extreme and vivid nightmares that will have seemed very, very real. Please reassure her constantly that she is ok, that she is safe, and that you love her. Maybe massage her hands and feet with a nice smelling lotion, something she will recognise, maybe her favourite perfume.

    Please keep in touch, God bless

    Debs xx

  • Hi just pray and be positive. I was in an induced coma for over two weeks . I have a little nerve damage in my toes . My family told me afterwards the docs were always giving them worse case cenarieo. So be brave and keep talking to mom she can here you .

  • Hi, scary moments for you and your mum and it's the not knowing that makes it even worse. The Drs will usually give a non committal answer or a worse case scenario one. I was in a coma for a month with a tracheotomy in and when the time came I didn't seem to want to wake up to the point when the Drs started to say brain damage etc to my family. I did come round but like your mum had lost the use of my limbs, but lots and I mean lots of physio I eventually got out of bed still couldn't feel my legs and as I used to put it my brain and legs didn't seem to talk to each other. I was told I had myopathy. I'm at home and I came home unable to walk with zimmers and strong family support, husband and daughter. Eighteen months later things are much better though not 100%, I still have problems,dreams,nightmares so be positive for your mum listen to her, let her talk however way she wants to stimulate the arms and legs and look after yourself.

    I'm here if you need me be brave it's hard on her and on you. Take care hugs for you both.x

  • myopathy is muscle damage . weakness I think you may want to research critical illness polyneuropathy . I have aquired both from sepsis try not to worry myopathy resolves in time (a long time) with physio and polyneuropathy is hit or miss depends where it is in the body.

You may also like...