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Real members of myHIVteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

How To Treat "Peripheral Neuropathy" (all-over Tingling/itchiness & Sleeplessness)?

A myHIVteam Member asked a question 💭
Ystalyfera, UK

Some months ago I posted on this forum about the serious side-effects I suffered while trying two new regimens over the course of a year - a year of hell. I said that the side-effects were severe insomnia and itchiness, and that these were so bad that I eventually had to return to my previous regimen despite it not being the best regimen for my kidneys. However, while insomnia and itchiness is no longer nightly for me, I STILL suffer from both now and then, perhaps once a week. Last night, for… read more

March 28, 2023
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A myHIVteam Member

I use Gabapentin for neuropathy. I also use ibuprofen gel on my bottom and thighs. These are the two places which keep me awake at night.

July 11, 2023
A myHIVteam Member

I'm so sorry you're experiencing these symptoms. Let me first say that Peripheral Neuropathy is different for everyone. Please talk to your doctor. I've taken Gabapentin for years to help all over my body. I've also added a capsule of Turmeric (it's a spice) shown to reduce inflammation - it also helped me to reduce pain. Before I go to bed at night I rub a Lidocaine and Prilocaine cream on the bottom of my feet to help with stabbing overnight. (I've watched the nerves in my legs dance for years.) The creams may be less interactive with other meds and good for your kidneys. Again, please talk with your doctor. Don't expect overnight changes - some of these take a month to feel relief - stay the course and be patient.

March 28, 2023
A myHIVteam Member

Suffered with peripheral neuropathy especially when on Zerit. It continued years after I stopped taking it. I was on it from 96 to 2000. It was so bad that I was on ever increasing pain medication. Finally stopped all pain medication in 2/2014. I still have nerve related muscle spasms. I take Flexerile PRN.

March 28, 2023
A myHIVteam Member

@A myHIVteam Member - the info from @A myHIVteam Member and @A myHIVteam Member is good stuff! My partner has both restless leg syndrome and neuropathy. He uses ropinerole for RLS and gabapentin for neuropathy. Gabapentin works well. Topical agents that numb (Itch X) and reduce inflammation (cortisone) can help if you have a consistent place that bothers you. Lastly, the ITCH makes me wonder if a good dose of diphenhydramine (Benadryl) might help. It is also an OTC sleep aid, so "two birds, one stone." Good Luck 🍀. I know it can be miserable.

PS: Tylenol can sometimes work wonders. It is under rated.

March 28, 2023
A myHIVteam Member

@A myHIVteam Member, thanks for helpful suggestions.

July 11, 2023

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