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Anyone here dealing with peripheral neuropathy?

Neuropathy | Last Active: Oct 28 4:54pm | Replies (3050)

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@gladrag

Peripheral neuropathy has started in both of my hands now and it’s very difficult to sleep at night and now also very difficult to get through the day. It started slowly and built with a vengeance but I can’t seem to find anyone who is able to treat this kind of pain. They say that if it’s nerve pain there’s really nothing they can do. Pain management has started me on xtampza-ER And I’m not quite sure what it does, seems to help some thing but not the direct nerve pain. My biggest problem is describing how strong the pain is And I cannot believe that no one has been doing research on helping people that have to live with this. If anyone else is living in this intense situation with pain in their hands I’d love to hear more from you about how you cope with it. The only coping mechanism I found is freezing bottles of water wrapping them in towels and holding them in my hands until they get too cold to hold any longer. It doesn’t get rid of the pain but it seems to cool it down a little bit. It feels like hot liquid cayenne pepper running through my veins. How could this be possible? Is anyone else going through this?I have had peripheral neuropathy developing in my feet and ankles and over the years that has passed and settled down from extreme pain to kind of a numbness. There is also constant tingling in my hands as if they have gone to sleep but gone well past that “asleep” feeling.

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Replies to "Peripheral neuropathy has started in both of my hands now and it’s very difficult to sleep..."

I am with you. Until I started to suffer from CIPN I knew nothing about Chemo Induced Peripheral neuropathy. My oncologist, my GP, & neurologist think I'm a bit of a nut. (only kidding) None of them know how to treat my pain or havoc it does to my day to day living. I am so lucky to be alive and everyday is truly a gift but last night at 2 AM I'm on the couch, heating pad, my Gabas (Gabapentin) & search a word. Its not a straight cancer problem, or a neurological one and all I can have are more tests. I'm up to 20mg of oxycodone3-4 x a day. I'm hoping maybe if enough people have complaints research & answers might follow. I mean when Eric Clapton says he has it in his hands & fingers Doctors might take notice. We are pain warriors and we fight the good fight.

There are a lot of people doing research on how to live with neuropathy. You're "lucky". I have poly neuropathy and optic neuropathy. I'm burning from head to toe.