u/Stella-Shines-

Has anyone else dealt with Post Critical Illness Polyneuropathy or Myopathy or both like me??? I’m really struggling and would love some advice.

I haven’t gotten around to posting my full story yet but I am really struggling to cope with neuropathy. I still can’t feel my right foot and much of my lower right leg. Then I have less severe neuropathy in my left foot and right hand, and it is barely present in my left hand.

The pain is bad. I’m on 800mg of gabapentin 3x a day but it is still really severe even on this dosage. We just went up a couple weeks ago after getting the all clear on my kidneys (full recovery after acute kidney injury) to go up but it hasn’t made a difference. Also on 100mg of methadone daily and going up to 120 next week. But I don’t feel that one touches the neuropathy at all.

Any tips, tricks, ideas or just support would be so appreciated. Mainly I would especially love to hear from anyone who has had a significant improvement in the neuropathy and how long did it take? It’s been exactly 5 months since my critical illness. I know it’s not long in the grand scheme of things but I am really miserable.

Hi all,

I’ve been disabled my whole life (autistic, mental illness including contamination OCD) and especially since 2011 when I had a serious autoimmune illness requiring chemo and a host of other awful stuff.

The stress of that illness and the strong medications I was treated with caused a long string of ever increasing chronic illnesses/disabilities. Fibromyalgia, then IBS, Chronic Migraine, etc.

Most recently in May I had a terrible accident and was in the ICU for a week, hospital for a month. I had an Anoxic Brain Injury and I have Post-Critical Illness Polyneuropathy and Myopathy. I was unable to write, use utensils, type (still struggling with that one), do basic hygiene, etc. and unable to even move my right leg, let alone stand or walk, at the beginning.

I have made a lot of improvement. However I am really struggling (probably because of my OCD) with cleanliness/hygiene. Due to having very low energy and being able to walk only short distances (like in the house only) without a mobility aid, I haven’t been able to keep the same standards of cleaning that I had before and it’s been really mentally taxing on me.

Most recently I’ve been worrying about my mobility aids being dirty, tracking dirt and mostly germs into the house, the idea of touching my wheelchair wheels just disgusts me (yet I have to do it, obviously, when I use it), I’m always freaking out when I take my rollator into a public bathroom thinking about all the toilet aerosolized stuff that’s getting on it, etc.

Does ANYONE have ANY tips for me?? Do you guys just deal with feeling dirty? Does it not bother you because I’m overly germaphobic and typical people aren’t worried about this type of thing? Do you have specific methods and systems for cleaning stuff (especially related to public restrooms, that’s one of my main “icks”)?

Another thing is handwashing while in a wheelchair. Is there a specific method to make sure I can get my hands clean and prevent water running everywhere? Or should I just stand up and deal with the consequences.

One other thing regarding handwashing- my right hand has a slight contracture, it kind of looks like a stroke hand since I had a brain injury it affected my hand like a stroke does. It makes it harder for me to feel like I’m doing a thorough job of washing my hands.

Since I’m spending so much time in clinics doing appts and therapies, I’m constantly washing my hands and I want to make sure I’m doing it effectively.

Very long I know, but I’m really struggling and going through it in about 100 ways. This is a seemingly “little” thing, but I feel like it would give me a lot of peace of mind and give me a bit of a sense of control over my out of my control circumstances. ANY tips would be appreciated greatly, no matter how small or silly it may seem. Thank you so much!!!

TL;DR- newly physically disabled. Seeking cleanliness tips for mobility aids and home/handwashing tips.

I was in the ICU for 5-6 days in May 2026 after an accidental OD. I was on life support, it is a miracle I’m alive and as functional as I am. Spent a month in the hospital doing therapy and another after than inpatient rehabilitation.

I was on dialysis, had kidney failure (Acute Kidney Injury), a heart attack and permanent heart failure and cardiomyopathy. I had to relearn how to use utensils, write, stand, walk, basic hygiene, shuffling cards, everything. It’s been 4.5 months. Still a longgg way to go. Ask me anything.