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Parsonage turner syndrome *

Brain & Nervous System | Last Active: Oct 25, 2023 | Replies (237)

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@lisalucier

Hi, @chriso12345 - As you'd asked about suggestions for managing the pain with your Parsonage Turner Syndrome, I'd like to invite members like @jjspokane61 @mydolly @patrick17 @confused1955 @andylevine @yaseen786 to come back to this discussion and see if they'd have some input for you. Hoping they may also have some thoughts for you on therapies like using heat and cold, and cupping, plus the numbness in most of your hand and its hypersensitivity to cold and how that might be managed.

While awaiting their return, you may be interested in reading this NIH information on Parsonage Turner Syndrome, https://rarediseases.info.nih.gov/diseases/4228/parsonage-turner-syndrome.

You mentioned taking gabapentin and that it's helping you continue working. How is it working for managing your pain? Are you experiencing any side effects from the medication?

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Replies to "Hi, @chriso12345 - As you'd asked about suggestions for managing the pain with your Parsonage Turner..."

I have to say it but my pain lasted only 1 week. But it was so intense I had to be in a morphine drip. Lyrica worked a bit as well. It is nerve pain so opiates can only knock you out. Neurotin and Lyrica may be your best bet. I can't comment on coping it other alternative treatments.

The Gabapentin does help, but it seems to wear off after a few hours, so it's a bit like riding a roller coaster. It's about 3:30 a.m. and I wish I was asleep. I'm taking a low dose during the day and a higher dose around 8 p.m. to try and sleep. On good nights I sleep about 7 hours. Fuzzy in the morning if I take it any later.