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Post sepsis syndrome….what helps?
Hello, I’m new and posted this as a comment instead of a new discussion. So here it is again!
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 (kidney infection and subsequent kidney stone blockage) 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!
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Jenny, I wish I could do more than commisserate with the plight of you and your husband. Shame on doctors who aren't helping you navigate the pain issues by referring your husband to specialists. I've had highly rated doctors tell me a condition must be imaginary because they can't explain it. Takes a lot of resiliance to trust the body's wisdom and keep seeking medical help until you find a professional who puts the puzzle pieces together . . . correctly. And it can be a challenge to find a physical therapist who is a supportive match for a person's particular conditions. One size does not fit all. If you haven't already been in touch with the Sepsis Alliance https://www.sepsis.org/, you might try their resources and online support groups. In addition to posting in the ICU support group, you may want to post in support groups that focus on pain. Again, I wish I had more to offer. Sending pain-free well wishes to you and your husband. Sharon in Dallas.
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2 Reactions@sreuler
Thank you so much! His PT finally did research on PSS and decided to take a less aggressive approach. He had acupuncture yesterday so will see if he starts feeling improvement. Agree, medical doctors don’t seem to have any training on this. Even his internal med doctor! I had hoped Mayo Clinic would have more insight, but I think it is just not a one solution issue!
I appreciate your kind words.
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2 Reactions@jennylieb, would you say that post-sepsis syndrome has similarities to post-intensive care syndrome?
See more info in this Mayo Clinic blog
- Post Intensive Care Syndrome (PICS) Blog https://connect.mayoclinic.org/blog/pics/
You're right that many doctors don't have training in PICS, however it is recognized at Mayo Clinic. It can also affect family members as you too have been through the trauma.
You might also be interested in this related discussion:
- Post Sepsis and ICU Syndrome: There are days I feel so down https://connect.mayoclinic.org/discussion/post-sepsis-and-icu-syndrome/
It is encouraging to hear that your husband's PT learned more about PSS to treat him according to his abilities to promote healing rather than making things worse. How is he doing with the acupuncture treatments?
@colleenyoung
Hi! He had only 1 acupuncture and the provider said to let her know if he noticed any benefit, I will say he actually had a good day this week. This was after he took an Epson salt bath, and he’s been putting magnesium lotion on the bottoms of his feet. We will see if that continues to help!! 🙏🙏🙏
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