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?

@muriel66

For the past four days, I have felt more uplifted. This might be the case because I have been successful in developing routine, though I have more to do to make this truly effective for physical and emotional recovery from my health issues. I am satisfied with small steps and am thankful. Even though my health issues have been difficult while at Mayo Methodist Hospital and Mayo Clinic, I actually feel very positive about my experiences there because of the compassionate and professional employees from each Mayo department. Being part of a worshipping community where I live is also helpful.

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This is such great news, @muriel66. Thank you for sharing with us. Being satisfied with small steps is so important. They make the bigger steps possible. To use a running analogy: Not everyday can be a marathon. Some days we have to count putting on the running shoes as a success. You may find these discussions on Connect to be interesting to read or participate in:

– Staying Motivated for the Long Haul https://connect.mayoclinic.org/discussion/staying-motivated-for-the-long-haul/
While this discussion started about weight loss, the group is encouraging each other whatever a person’s personal health goal is.
– How Spirituality Can Help Stress https://connect.mayoclinic.org/discussion/how-spirituality-can-help-stress/
The title says it all. Lots of different people sharing many aspects of emotional and spiritual health and how it relates to physical health

Muriel, would you mind sharing one (or more) of the small steps that you’ve made and how it helped?

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Hello everyone my name is Prashant from india sorry for my bad english.
Last year my father died in an very bad accident he suffered for 8 days in hospital. I am 30 year old i never saw my father ill not a single band aid on his body in my whole life and i last i saw my father lying on bed on ventilator and my bighest regret of my life is that he didn’t say a word to me my mom and and my brother because after accident he was in coma and then my father died.

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After these events i started getting angry on small things.
my whole body shakes when i lie down or sit
My eyelids twich when i close them otherwise no problem in eyes or eylids
My teeths chatter when i close my teeths otherwise my teeeths are normal no problem in them
My lips twich
At night when i touch anything with my legs or fingers things feel like floating or moving,
When i lie down my legs feels like snakes from inside.
Very severe fatigue and no sleep in my eyes but after taking some mix vitamins syrups fatigue is gone and now there is sleep in my eyes.
And also there is one thing when i search for any disease on net it feels like that i have that symptoms but like when i search for teeth chatter on net result show parkinsons and the first symptom was finger tremor when i read that my fingers started shaking but after few days there was no tremor in my fingers can this happen

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@prashantnayal123

After these events i started getting angry on small things.
my whole body shakes when i lie down or sit
My eyelids twich when i close them otherwise no problem in eyes or eylids
My teeths chatter when i close my teeths otherwise my teeeths are normal no problem in them
My lips twich
At night when i touch anything with my legs or fingers things feel like floating or moving,
When i lie down my legs feels like snakes from inside.
Very severe fatigue and no sleep in my eyes but after taking some mix vitamins syrups fatigue is gone and now there is sleep in my eyes.
And also there is one thing when i search for any disease on net it feels like that i have that symptoms but like when i search for teeth chatter on net result show parkinsons and the first symptom was finger tremor when i read that my fingers started shaking but after few days there was no tremor in my fingers can this happen

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@prashantnayal123 thank you for joining the conversation and for sharing your story. I am so sorry that you have experienced such a deep loss. What you are describing sounds very much in line with what others who have experienced post intensive syndrome – family or PICS-F, have shared. You went through a very significant and unexpected trauma. Our PICS page has more information on this if you are interested in learning more. Have you had an opportunity to seek any type of counseling for your symptoms?

Link to PICS page:
https://connect.mayoclinic.org/page/pics/

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@prashantnayal123

After these events i started getting angry on small things.
my whole body shakes when i lie down or sit
My eyelids twich when i close them otherwise no problem in eyes or eylids
My teeths chatter when i close my teeths otherwise my teeeths are normal no problem in them
My lips twich
At night when i touch anything with my legs or fingers things feel like floating or moving,
When i lie down my legs feels like snakes from inside.
Very severe fatigue and no sleep in my eyes but after taking some mix vitamins syrups fatigue is gone and now there is sleep in my eyes.
And also there is one thing when i search for any disease on net it feels like that i have that symptoms but like when i search for teeth chatter on net result show parkinsons and the first symptom was finger tremor when i read that my fingers started shaking but after few days there was no tremor in my fingers can this happen

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No mam actually i am on bed for 3 months due to leg fracture as I told i am very poor and only income earner i didn’t got the chance to tell anyone about my symptoms mam i am very scared that if something happens to me who will take care of my mom and small brother mam i cry at night and when my mom and brother are not at home i dont where to gi what to do.. mam i want to take care my sweet mom she is the sweetest person i have ever seen in my life in in night i look at her when she is sleeping and cry whole night …

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Please tell me how to cure my self what to do and what type of doctor will see me is this pics curable or i will suffer my whole life

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@prashantnayal123

Hello everyone my name is Prashant from india sorry for my bad english.
Last year my father died in an very bad accident he suffered for 8 days in hospital. I am 30 year old i never saw my father ill not a single band aid on his body in my whole life and i last i saw my father lying on bed on ventilator and my bighest regret of my life is that he didn’t say a word to me my mom and and my brother because after accident he was in coma and then my father died.

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@prashantnayal123 I am so sorry for your loss. Losing a parent is always difficult. I lost my father when I was 15 and my mother when I was 27. I will always miss them.
JK

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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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