Coma recovery

[Andy86tay]

I was in a coma, for 6 weeks, 10 weeks hospital stay, I understand recovery takes as long as takes, just the pain seems to be getting worse, joints and bones. Has anyone had this issue cheers xx

[Sepsur]

It could be neuropathy & a result of muscle waste. Post intensive care syndrome (PICS) includes symptoms that you mention.

I’ve had sepsis & Covid - sepsis sufferers also describe joint pain

[Andy86tay in reply to Sepsur]

Aw thanks for your reply. That's very helpful. Yeah I had both sepsis and covid. I keep putting off going to the Dr, as the mental affects off it all are painful to. Do you no of treatments available or how they diagnose cheers

[Sepsur in reply to Andy86tay]

If it’s nerve damage, there is a test.

I’m a fellow sufferer so I understand it from my point of view - when they sedate us, they also paralyse us so we synchronise with all the machinery/ ventilator better.

This sedation/paralysis turns off muscles & some of nervous system. The muscles waste quickly. The body in trauma needs huge quantities of protein to survive. Muscle is the easiest to access.

When sedation & the paralysing agents are removed - not everything switches back on.

Nerve damage ( from sepsis, meds & being that I’ll) can repair but takes a day to mend 1mm.

My knees would suddenly feel like they had caught fire. Wrists, ankles, shoulders & hips hurt but it has all improved over time

[Andy86tay in reply to Sepsur]

That all makes sense, so reassuring hearing from one else, is weird I take comfort in that. It's hard to imagine what the body was going threw during sedation, I've been told but I was in a daze struggle n still struggle to take it all in.

I feel like I went to sleep n woke up, my just can't get round it.

I've worked hard since I woke up physically i still have a long road ahead of me, but the mental side is is completely scattered.

Yeah I have nerve damage to my left hand and right thigh..

I'm the exact same although no sign of improvement. I seem to be getting worse. Cheers

[Milesplatting in reply to Sepsur]

Great reply , I feel just the same after my illnesses and ICU stay. Hope you are still improving

[Milesplatting]

I’ve got the same symptoms after 5 week coma,8 week hospital stay.Keep up the physio and fingers crossed,I like Sepsurs answer.Best wishes to you.

[Andy86tay in reply to Milesplatting]

Yeah thank you. It's definitely helpful

[Hawkon]

Hi. I was in a coma for 2 months, 6 weeks of this on Ekmo. I'm now in a rehab-hospital and am helped with rebuilding muscles, re-increasing my lung capacity, physiotherapy and ergotherapy (for my hands). If not for this my situation would have been worse. Allthough I still feel muscle aches and stiffness in my joints, I can feel a lot of improvement. I now learning how to walk again 2 months after waking up. Hope you have the opportunity to get the same kind of help! Best wishes!

[Andy86tay in reply to Hawkon]

Scary to hear, but glad ur on the mend, and like you say things could have been alot worse. Good luck X

[Sleepalotmore]

Hi, I'm a dairy bit older than you and was in icu for 2 months, in a coma for almost a month and on ECMO for 23 days. And now, 2 years on, I have a lot of stiffness and achy joints! I'm learning that it's all part of being critically ill.

[Andy86tay in reply to Sleepalotmore]

It's really hard to think off it all, especially the ecmo. I really listening to that getting spoke about.

Yeah I have an appt to talk to gp today. Just glad I got advice b4 hand, I'm not confident

[Sleepalotmore in reply to Andy86tay]

Good luck! Hope your gp can help

[Andy86tay in reply to Sleepalotmore]

Thank you I've to go for bloods Friday, and been put on anti inflammatory to see if that helps 👍

[PeterJu]

hi Andy. I think you have had lots of good replies already. I was in a coma and on a ventilator too. I am in a post icu support group and don't know anyone on the group who doesn't have joint and muscle pain. You lose lots of muscle in ICU, and in addition they can shorten too. To compound all of that, in recovery we are likely to de-condition as we sit down more and exercise less. I am no professional so can only share what has worked for me. Hot baths every night , which I found eased the pain. paracetamol before going to sleep, to stop (in my case) leg pain waking me up too early, and walking within my limits regardless of how fatigued I felt to reduce my de-conditioning. It has still taken me 18 months though! Good luck with your recovery.

[Andy86tay in reply to PeterJu]

Thank you very much for all this, very helpful. Take care