Originally Posted by elise49

Hi!

I'm new here. I'm posting on behalf of my boyfriend, who developed critical care neuropathy in his feet after a severe infection that went septic. Before this happened, he was an active 34-year-old engineer who played soccer and did martial arts, as well as played the drums. Now, getting up and going to the bathroom is extremely painful and he has not left the house since he got home from the hospital, about three weeks ago.

The neuropathy first presented as severe pain in both of his feet, including extreme sensitivity to touch. After a few days of getting off the ventilator, his right foot went completely numb and he developed foot drop on that foot. At night he would get these flare-ups that felt like someone was stabbing his feet at different points and the pain would shoot up his foot, sometimes past his ankles. Doctors misdiagnosed him, I did some googling and found out about neuropathy and we both fought so he could get an emg, which confirmed the diagnosis. Since he got home, he's regained feeling in his right foot and can raise it slightly. The flare ups have gotton better, but he is still in a severe amount of pain daily and has not been coping well. The doctors all say that this amount of pain isn't normal and they just seemed perplexed on how to deal with it. He's on 900mg gabapentin 3x a time, as well as tramadol 3x a day 50 mg.

On top of that, he's deeply traumatized about the whole ordeal, badly enough that his doctors want him to see a therapist about post icu PSTD. He is not someone who has lived with pain before (I live with chronic pain myself) or has ever really been sick or had a trauma or felt helpless before so he has no coping skills in which to have to deal with this (which isn't his fault or a bad thing). He's expressed some suicidal thoughts to me (passive ones, like he wishes he didnt survive the icu or that he is worried that if this goes on for a few months, he'll kill himself). He just really depressed and hopeless and we're not even three weeks into this.

I've spent the past week reading through this subforum and have learned a lot. I'm going to pick up some CBD for him tonight and he is starting a multivitamin. From what I'm reading, it seems like there is a lot of hope for him- we know what the underlying cause is and that is healing, the foot drop went away, the pain is changing (and he's getting some itchiness now) and seems to be getting less severe, though its hard to tell on the day today. I'm hopeful he will see a lot of improvement over the next year, but even if he doesn't, I have faith we will find ways for him to have a good a life as possible.

However, I am deeply afraid that the pain will be too much for him to cope with and he'll do something drastic before it has a chance to get better or he has a chance to learn new ways of living. He's not weak for feeling this way, I have my own struggles with dark thoughts on my bad pain days and I just want to support him through this the best I can.

Given all of these contexts, I have a few questions (and I apologize in advance if these are stupid):

1. How do you know if the polyneuropathy is severe? I've been reading a lot of studies on critical care neuropathy that says full recovery is possible within a year except for severe cases. I don't know if my partners case is severe or not! The pain is certainly severe, but that just seems to come with the territory.

2. He really hasn't been doing anything at all since coming home from the hospital. I don't want to push him and yet, I worry that him sitting in pain all day staring at the TV is going to make the depression/ptsd worse. What are ways people are able to maintain a life when dealing with this pain? Are there things loved ones did that were helpful? Are there things loved ones often do that are not helpful?

3. Standing on his feet is very painful and we are getting conflicting information about how to go about PT and movement. Some doctors and physical therapists have said he should do PT and try to stand/ move to "desenstize" his feet, others have advocated that he not push himself and make the pain worse. I tend to find myself agreeing with the latter, solely because I trust those doctors more but I have no idea what is actually correct.

4. Is it okay to have hope or am I fooling myself?

5. Are there any databases or websites that can refer me to mental health providers who work with people with medical trauma/ pain induced depression? Google hasn't been super useful.