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

Have you heard of Post-Intensive Care Syndrome? Sometimes it's called post ICU syndrome or PICS. PICS is defined as new or worse health problems after critical illness. These problems can affect your mind, body, thoughts, and/or feelings.

On Connect we would like to bring together people who have been affected by critical illness, and hopefully lighten the burden you bear. Patients and family members welcome.

Grab a cup of tea, or beverage of your choice, and let's chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Intensive Care (ICU) Support Group.

Hello, Everyone. I was in Intensive Care for three days in late October of last year. I was hemorrhaging, and the doctors could not locate the source of the bleeding. I was delirious, became combative, and had to be restrained. I was screaming, begging my husband to take me out of there and put me in a different hospital. As a survivor of childhood sexual abuse, I felt violated to the extreme, as every orifice of my body had tubes being inserted continually. I was certain, whether it happened or not, that one nurse who ordered the restraints was very verbally abusive to me. They gave me strong doses of Haldol and Ativan, which my body reacted very negatively to. The inflating/deflating pressure cuffs on my legs felt like genuine torture. Having been a psychotherapist earlier in my career, I recognized quickly afterwards that I was experiencing some type of post traumatic stress response, as was my precious husband as caregiver. I made a good recovery, with a few difficulties during the year that were troublesome, but not particularly traumatic. Fast forward to the end of September, early October. I have begun having nightmares again and flashing back frequently during the daytime, and overall am feeling jittery. I was wondering if this was some kind of "anniversary" effect, in which the body just knows this is the same time of year, even though my conscious mind knows differently? Complicating the whole picture is that I am sole caregiver of my 88-year-old mother who has serious heart issues, is in chronic horrible pain, and in the last few months has lost the sight in one of her eyes. She still lives alone with her little dog, but she is virtually home bound and I am with her about 50 percent of the time. Therefore, I constantly carry a low grade anxiety about her health. I was relieved to find this support group and to learn that this is a diagnosable condition known as PINS. Does anyone have any feedback whether this "anniversary effect" is a real phenomenon, or can anyone relate to it? Thanks so much to all of you in advance.

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I am sorry u r going throught this but it seems like things I went through. Just because u went through an event it does inot end. I continually have this and I co tiny ally struggle for may Years out. It is very depressing but I try and tell myself that I went through something traumatic and it never goes away. There is nothing wrong with it and that is my experience. Be well!

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@jean63

Hello, Everyone. I was in Intensive Care for three days in late October of last year. I was hemorrhaging, and the doctors could not locate the source of the bleeding. I was delirious, became combative, and had to be restrained. I was screaming, begging my husband to take me out of there and put me in a different hospital. As a survivor of childhood sexual abuse, I felt violated to the extreme, as every orifice of my body had tubes being inserted continually. I was certain, whether it happened or not, that one nurse who ordered the restraints was very verbally abusive to me. They gave me strong doses of Haldol and Ativan, which my body reacted very negatively to. The inflating/deflating pressure cuffs on my legs felt like genuine torture. Having been a psychotherapist earlier in my career, I recognized quickly afterwards that I was experiencing some type of post traumatic stress response, as was my precious husband as caregiver. I made a good recovery, with a few difficulties during the year that were troublesome, but not particularly traumatic. Fast forward to the end of September, early October. I have begun having nightmares again and flashing back frequently during the daytime, and overall am feeling jittery. I was wondering if this was some kind of "anniversary" effect, in which the body just knows this is the same time of year, even though my conscious mind knows differently? Complicating the whole picture is that I am sole caregiver of my 88-year-old mother who has serious heart issues, is in chronic horrible pain, and in the last few months has lost the sight in one of her eyes. She still lives alone with her little dog, but she is virtually home bound and I am with her about 50 percent of the time. Therefore, I constantly carry a low grade anxiety about her health. I was relieved to find this support group and to learn that this is a diagnosable condition known as PINS. Does anyone have any feedback whether this "anniversary effect" is a real phenomenon, or can anyone relate to it? Thanks so much to all of you in advance.

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@jean63 I do not have any medical reference, but I know that anniversaries of traumatic events are often one of many possible triggers for several people in my immediate family. Other triggers are: events resulting in similar emotions, similar events, similar personalities as those involved in the event, similar noises/lighting/odors/touches/textures, and anything else that bears any kind of similarity or evokes the memory of the trauma. I believe that you certainly are a candidate for "annual" traumatic response if no other reason than that you are dealing with you mother's failing health. I can certainly relate to your situation in that event, as I am also caring for my mother in her end days.

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@rsinger22

I am sorry u r going throught this but it seems like things I went through. Just because u went through an event it does inot end. I continually have this and I co tiny ally struggle for may Years out. It is very depressing but I try and tell myself that I went through something traumatic and it never goes away. There is nothing wrong with it and that is my experience. Be well!

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Thank you, @rsinger22, for normalizing what I am experiencing. It really does help to know I'm not alone in this.

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@jean63

Hello, Everyone. I was in Intensive Care for three days in late October of last year. I was hemorrhaging, and the doctors could not locate the source of the bleeding. I was delirious, became combative, and had to be restrained. I was screaming, begging my husband to take me out of there and put me in a different hospital. As a survivor of childhood sexual abuse, I felt violated to the extreme, as every orifice of my body had tubes being inserted continually. I was certain, whether it happened or not, that one nurse who ordered the restraints was very verbally abusive to me. They gave me strong doses of Haldol and Ativan, which my body reacted very negatively to. The inflating/deflating pressure cuffs on my legs felt like genuine torture. Having been a psychotherapist earlier in my career, I recognized quickly afterwards that I was experiencing some type of post traumatic stress response, as was my precious husband as caregiver. I made a good recovery, with a few difficulties during the year that were troublesome, but not particularly traumatic. Fast forward to the end of September, early October. I have begun having nightmares again and flashing back frequently during the daytime, and overall am feeling jittery. I was wondering if this was some kind of "anniversary" effect, in which the body just knows this is the same time of year, even though my conscious mind knows differently? Complicating the whole picture is that I am sole caregiver of my 88-year-old mother who has serious heart issues, is in chronic horrible pain, and in the last few months has lost the sight in one of her eyes. She still lives alone with her little dog, but she is virtually home bound and I am with her about 50 percent of the time. Therefore, I constantly carry a low grade anxiety about her health. I was relieved to find this support group and to learn that this is a diagnosable condition known as PINS. Does anyone have any feedback whether this "anniversary effect" is a real phenomenon, or can anyone relate to it? Thanks so much to all of you in advance.

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Please forgive me for taking this amount of time to get back to you, @2011panc. Your post was exactly what I needed to hear and cheered me greatly. May the Lord bless you and keep you.

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It's been some time since I've dropped in and visited with everyone following this thread! I hope this finds you all well. I wanted to make everyone aware of a new monthly "Breaking it Down" series that I am starting regarding Post-Intensive Care Syndrome. You can follow this link to read more: https://connect.mayoclinic.org/newsfeed-post/breaking-it-down-what-exactly-is-post-intensive-care-syndrome/

Feel free to reply directly on that page under the posting or bring any questions or comments back to this forum to discuss more. I hope you will find this informative series helpful!

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I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my secondary adrenal insufficiency). I didn’t know about PICS until I read about it here but I have all the symptoms plus fear of reoccurrence, which is not unlikely. I don’t have a specific question but am looking to feel better and in more control of my fears. I understand what is going on but that doesn’t always diminish the symptoms. I traveled from my home on the east coast to Mayo in Rochester and received wonderful care, including treatment plans to minimize a reoccurrence. So far, 10 months without hospitalization, which is a record for what has been a 10 year chronic/acute illness. I am hopeful but always concerned about another life-threatening episode. Any feedback would be helpful. Thank you.

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@rckj

I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my secondary adrenal insufficiency). I didn’t know about PICS until I read about it here but I have all the symptoms plus fear of reoccurrence, which is not unlikely. I don’t have a specific question but am looking to feel better and in more control of my fears. I understand what is going on but that doesn’t always diminish the symptoms. I traveled from my home on the east coast to Mayo in Rochester and received wonderful care, including treatment plans to minimize a reoccurrence. So far, 10 months without hospitalization, which is a record for what has been a 10 year chronic/acute illness. I am hopeful but always concerned about another life-threatening episode. Any feedback would be helpful. Thank you.

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@rckj I am so glad that you found this conversation. Opening up and talking about your experience and ongoing challenges can be so powerful and helpful to recovery. There have been many members of this conversation who have shared that with us. A couple of our most recent comments seem to be very much in line with what you are describing. @jean63 and @rsinger22 - you both shared similar sentiments as @rckj. Do either of you have more insight/words of encouragement or want to share your experience with this?

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@rckj

I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my secondary adrenal insufficiency). I didn’t know about PICS until I read about it here but I have all the symptoms plus fear of reoccurrence, which is not unlikely. I don’t have a specific question but am looking to feel better and in more control of my fears. I understand what is going on but that doesn’t always diminish the symptoms. I traveled from my home on the east coast to Mayo in Rochester and received wonderful care, including treatment plans to minimize a reoccurrence. So far, 10 months without hospitalization, which is a record for what has been a 10 year chronic/acute illness. I am hopeful but always concerned about another life-threatening episode. Any feedback would be helpful. Thank you.

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@rckj, I would like to extend my hand in a virtual handshake to welcome you to Mayo Clinic Connect. I am happy that you have posted in this discussion. If you have read through any of the other responses, I think that you will realize that you are not alone.
I am sorry to hear of the complicated path you have endured. I understand your fear/concern about possible life-threatening complications and I am thrilled for you that you are on a very positive non-hospital path right now.
One foot in front of the other- One step at a time!
Rosemary

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Almost two years after suffering severe septic shock and nine months after suffering septic shock, both because of the way my body responds to surgery, I again am reading about PICS. I continue to face struggles that affect my days. I finally am writing on this page. I wasn't able to write in the diary that was given to me while in and after I left Mayo intensive care (and went to a room on a different floor). My de-conditioning, my decreased cognitive ability, my immense fatigue, my emotional upset, and my schedule of very helpful medical care... such as dialysis, physical therapy, services entering the room... left me not wanting to do one more thing (not to mention that my physical de-conditioning meant that for a period of time, my hands could not write). I did pray almost continually, listened to all who provided me care, tried to eat, etc.. But my greatest expenditure of energy likely was to eliminate body-waste successfully and regularly; once the bladder catheter and anal "garter snake" (my expression) were removed. Ha, ha!

Almost two years after my 2016 hospitalization, I again am diagnosed with moderate major depression. And, I have sluggish cognitive ability. Because I again am at a point of accepting my emotional-mental state, and my fatigue, I hopefully will post regularly on this site. It helps me when I express myself in writing. Today started as one of my more difficult days. I awoke five hours ago and still feel like I am mostly asleep. Possibly this is because of a change in medication for the depression. However, the change occurred before last week when I gained more energy and even experienced happiness. (Note: I always am thankful... thankful for excellent, insightful, kind, inspirational, steadfast care from the entire Mayo personnel; from my husband, sons, friends, neighbors... and always thankful God's peaceful presence and amazing wisdom!)

Though my depression was less of a fog last week, today the heavy weight returned to my mind and body. I see a local psychologist and last week he cautioned me that this could happen. Writing about the way I feel is helpful, so I will give writing at this site another shot. Also helpful is reading and re-reading the Mayo online information about PICS. I did that earlier today and was reminded that the way I am today (physically, mentally, and emotionally) aligns with PICS. I also am reminded that I will continue to recover as fully as is possible...thankfully! Today is sunny and now it is a little bit warmer in northwestern Minnesota, so I am going outside. I hope that whoever reads this, has as healthy a day as possible. M.H.

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