Post sepsis syndrome….what helps?

Posted by jennylieb @jennylieb, 6 days ago

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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sreuler | @sreuler | 2 days ago

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.