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?

My name is Mary and my husband suffered cardiogenic shock. As a result he was in ICU for 3 weeks. He is now out but experiencing PICS. He fluctuates between crying and anger that can be extreme. I know he is frustrated! He also still has some dilirium. I am trying to be patient but it is exhausting. I used to have a job doing intensive in home and this is exactly what this feels like. I know I need support.

Thank you!

@emsweller
Hi, Mary, I am so sorry to hear about your husband's situation and how it is affecting you and zapping your patience and energy. I do hope that he will be showing some signs of improvement, as even the tiniest bit of positivity would be good for you.
My husband was my caregiver before my organ transplant when my kidneys failed suddenely while I waiting for a liver transplant. I was in critical condition and not aware of all that was going on around me. After 5 days, I was flown from ICU in KY to Mayo Clinic in MN, all total I spent 3 weeks in hospital, but in my thinking, I was not completely aware or awake. Gradually, I realized that there were gaps in my mind and I wanted to know "What happened" during those times. I quizzed my dear husband to a point of exhaustion. I was frustrated because it was the tests and procedures that he could not explain to me. Later, I did look back at my medical reports and became more satisfied , and stopped quizzing hin. Only later did I realize that my questions were painful to him because durig that time, he was fully aware of how close I came to dying.
My situation after that is different, because I was able to receive an organ transplant and my health returned. I do remember that my emotions were everywhere after the transplant from joy to tears, but in my situation, that is a normal reaction.

Gigi, Is your husband having any kind of fo[[ow-up by cardiologist or primary care doctor? I think that this is something that you and he might bring to their attention. He might benefit from a medicine adjustment. Do you go to his appointments with him? Does this sound like something you would consider?

Thank you both so much. So, the dilirium has improved. He was transferred to a Long Term Acute Care facility today and I have to be in court tomorrow to obtain guardianship (temporary). I couldn't go with him at the time. The facility is 2 and 1/2 hours away from our home. So, I will visit on Thursday and stay until Saturday. He has called me 3 times today. He says he is confused and doesn't know where he is. I softly spoke to him and said I know where he is and why. I reminded him that he is there to get stronger so he can come home. He just needs reassurance. I am very tired these days but I know he is scared and just wants to know he is okay and safe.