Necrotizing fasciitis pain

Posted by parrot53 @parrot53, Nov 5, 2023

Hello,
My cousin had necrotizing fasciitis five years ago and almost died. She was in hospital for over five weeks and had many surgeries to remove dead tissue in her leg. She now suffers from severe pain and swelling. She cannot take opioids because she becomes like a ‘zombie” and they don’t work after twenty minutes.
Her orthopedic, primary care, and vascular surgeon docs all say there is nothing they can do to help her except prescribe gabapentin ( which she says doesn’t touch the pain) or opioids. Much of her leg is disfigured and lymph nodes and blood vessels were remove during her hospital stay. Has anyone had a similar experience and found relief?

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Please read the url below. Although buprenorphine is an opiate but works differently in your body than typical opiates. I don’t know if it is appropriate for your cousins type of symptoms but show it to your docs and has she seen a pain specialists?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4675640/

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Thank you so much for your reply. I did pass it along to her. Hoping it is something that will help.

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I would like to invite @corinnemcg to this discussion as they have discussed necrotizing fasciitis pain in the past as well. @jenatsky asks a good question in regards to seeing a pain specialist. Is this an option for your cousin?

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Yes, the pain specialist is an option. I will pass that along too although she told me in the past that they would write prescriptions for as many opioids as she needed but that they are not a good fit for her.
Thank you for your kind response.

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@parrot53 that is why I recommended the buprenorphine which works differently in our bodies than straight opiates. I hope she gets relief. Also, she might consider nerve blocks to affected areas which anesthesiologists can perform and who are also usually pain docs.

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I had Necrotizing Fasciitis for 7 months. Fever for 3 months straight. Could not walk on right foot for 7 months. Huge swelling of leg below the knee. Severe nerve damage on the top of my right foot even after the three inch wide hole closed up. Years of intense pain in right foot now even with the wound looking completely healed. Oxycodone or any other opioid makes me not care at all about the pain but does not actually reduce it. Stopped taking opiates long ago. I have been applying Asian pain relieving oil. Brand or name on the bottle is random. tried several, seem to all work about the same. But usually contains Methyl Silicate, Menthol and Eucalyptus oil. Gives complete relief at first, diminishing over a couple hours. I hope to find something better for this but that is what has kept the pain manageable so far.

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