Post-Intensive Care Syndrome (PICS) - Let's talk

Hello, I’m new here and I joined because I’m looking for help for my husband who has post sepsis syndrome. Doctors here don’t seem to have any answers for the severe muscle and joint pain he is suffering with. His event was Feb-April of this year and had 28 total days in hospital (4 in ICU) He is now in PT to help with his deconditioning since he seems to be at a plateau. PT seems to be making the pain worse. I know there is no magic pill but hoping someone has found something that can help. He is 69 and is recovered from the infection that caused the septic shock, but is now left with this extreme pain. We have an appt for acupuncture and are using red light therapy and massage tools we have at home. Would love input on other possible means of relief, as these aren’t working. Nights are the worst, daytime more bearable. I am so sad he’s been suffering like this for so long with no real solutions. Thanks for any input!

I was in the ICU for 30 days--this was decades ago--and had to go on a real quest to find relief from the pain you describe. A doctor specializing in rehab put me on prescription pain medication and monitored a course of OTC medication. If there is no reason not to take moderately strong pain medication it is worth asking your doctors. I found that I needed to reduce the inflammation and pain before other therapies could work well, if this makes sense. Rolphing, a great form of (sometimes rough!) bodywork helped me a lot. PT is very useful but you need a good therapist, so if this one is creating more pain try and switch to someone who is more compatible. Once I got the pain under control I continued with rolphing/PT and mild exercise/stretching. I've found talk psychotherapy useful too, as it gave me tools to not clench against the pain or have a full-blown panic response. I'm guessing that acupuncture/red light/etc. might work better in a few months once the pain is controlled. Can your husband get some pain control prescribed? Keep in touch as the situation continues, and thinking of both of you.

@mir123 thanks so much for your response. I will suggest this to him. I do think he needs pain meds especially at night. I’ll ask him to check with his doctor. Will see how pt goes or if he wants to switch! Thanks much!

You are very welcome. And keep in touch when you feel like it.

@colleenyoung
Hey everyone,

I wanted to share my experience because I know some of you will understand what I’ve been through, and maybe it’ll help someone feel less alone. It’s been a long, tough road, and I’m still trying to figure things out.

Back in January, I ended up in the ICU on a ventilator. They sedated me with ketamine, fentanyl, haldol, and other meds, and when I started to come around, I was in full-blown delirium. I thought the medical staff were going to harvest my organs. I was paranoid, delusional, and terrified. I didn’t understand what was happening, and it felt like they were trying to do something horrible to me.

I wasn’t resisting waking up. I just couldn’t wake up. The meds had me so out of it, and when I finally started to regain some awareness, I was confused, aggressive, and in complete panic. I pulled out my catheter—not because I was fighting anyone, but because I didn’t know what was going on. I kicked a nurse in the face, which I deeply regret. It wasn’t me—it was the delirium, the fear, and the confusion. I also saw the medical staff as though they were wearing masks to disguise their features. It was terrifying.

I have scars on my arm from ulcerated IV sites, and a knot on my neck from the central line. They are just visual reminders of what happened. Another thing that still bothers me is the bruises I had on my chest. I was unconscious at the time, and I didn’t know what was happening, but I was told later that the head nurse had pressed on my chest to try to wake me up. When I started coming out of the sedation a bit and became more aware, I asked, "What are you doing?" But nobody would answer me. No one would explain what was going on, and it felt like I wasn’t being heard at all. My OH (other half) later told me that he noticed I was more active when they reduced the fentanyl, so they decided to lower it, but I still wasn’t fully with it when I woke up. He also said, the head nurse was not a nice person.

I also developed pressure sores all over my back, which just adds to how poor the care was.

I do remember my life before I moved to the U.S., but everything after 1999 is a complete blur. I can’t recall anything, and it’s hard to come to terms with that memory loss.

Since everything happened, I’ve been struggling with anxiety, depression, and other mental health issues. I wake up with nightmares, and I can’t get a full night’s sleep. I wake up early during the night, and then usually 5 a.m., and often find myself unable to get back to sleep. It’s exhausting. The mental toll of it all has been hard to handle. They put me on antidepressants—Zoloft was the first one—and after just one dose, I spiraled into a very dark place. A friend of mine, who’s a pharmacist, recommended I get pharmacogenomic testing (PGx testing), and the results showed I have genetic factors that affect how I process medications. The drugs stayed in my system much longer than normal, which explains a lot of what went wrong with my recovery and mental health.

Physically, I’ve been dealing with hair loss, and my hair has turned completely grey at the roots. It’s just one more thing to process. Along with my odd taste in certain foods.

I joined this group because some of you may know exactly what this feels like. If anyone here has dealt with similar symptoms—whether it’s the delirium, memory loss, nightmares, or medications messing with you—I’d love to hear how you’re managing.

Thanks for listening.

Take care,
TealOtter

@tealotter, I appreciate your taking the time to write out your story. Was that the first time you've written out what took place? Some people found that in itself helpful on the path to putting things together and healing. It's a lot to process in the 11 months since your admission to ICU.

Thank goodness you got the advice to take pharmacogenomic testing so that, if/when medications are necessary, you get the ones that work for you. Have you found treatment approaches that help you manage the anxiety and depression?