I suffered with burning feet and itching all over I'm taking Gabapentin 1 Ativan at night I'm taking 900 mg at night it does make me nervous but that's okay can I talk to somebody
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.
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.
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.
Neuropathy and diet? When everything else falls short of providing relief, what about dramatically altering your diet? Has anybody tried this? I'm not referring to just eating more vegetables, fruits, whole grains, etc., the usual stuff that is discussed and recommended. Rather, I'm wondering if some holistic, seemingly weird approach to eating different could make a difference. Any thoughts on this topic?
Neuropathy and diet? When everything else falls short of providing relief, what about dramatically altering your diet? Has anybody tried this? I'm not referring to just eating more vegetables, fruits, whole grains, etc., the usual stuff that is discussed and recommended. Rather, I'm wondering if some holistic, seemingly weird approach to eating different could make a difference. Any thoughts on this topic?
@betoma, After reading Dr. Terry Wahls story on how she was able to successfully address her MS symptoms through cellular nutrition I am a believer that it can help neuropathy long term and provide some relief -- https://terrywahls.com/about/about-terry-wahls/. Not sure about the weird approach part but I have tried to drastically reduce the amount of carbs I take in daily and also do intermittent fasting to control my eating window. You might want to check out this discussion:
My feet burn constantly and its spreading up to knees. I used meds, ice, and elevate legs in couch. I have had biopsy and have Small Fiber Neuropathy in left foot years ago but thank it is spreading. I am allergic to Gabepentin and have gained so much wt. I too pray for research!!
@betoma, After reading Dr. Terry Wahls story on how she was able to successfully address her MS symptoms through cellular nutrition I am a believer that it can help neuropathy long term and provide some relief -- https://terrywahls.com/about/about-terry-wahls/. Not sure about the weird approach part but I have tried to drastically reduce the amount of carbs I take in daily and also do intermittent fasting to control my eating window. You might want to check out this discussion:
john - thanks for taking the time to compile your resource filled reply. There's so much nutrition and diet information out there, often conflicting, so it's hard to discern what might be best for addressing neuropathy issues. I'll take a look at these links. Thanks again
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I suffered with burning feet and itching all over I'm taking Gabapentin 1 Ativan at night I'm taking 900 mg at night it does make me nervous but that's okay can I talk to somebody
I understand hurting my feet and itching all over
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.
Yes I am - severely
Neuropathy and diet? When everything else falls short of providing relief, what about dramatically altering your diet? Has anybody tried this? I'm not referring to just eating more vegetables, fruits, whole grains, etc., the usual stuff that is discussed and recommended. Rather, I'm wondering if some holistic, seemingly weird approach to eating different could make a difference. Any thoughts on this topic?
@betoma, After reading Dr. Terry Wahls story on how she was able to successfully address her MS symptoms through cellular nutrition I am a believer that it can help neuropathy long term and provide some relief -- https://terrywahls.com/about/about-terry-wahls/. Not sure about the weird approach part but I have tried to drastically reduce the amount of carbs I take in daily and also do intermittent fasting to control my eating window. You might want to check out this discussion:
Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/
You also might find these references helpful:
-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
-- Metabolic syndrome as a risk factor for neurological disorders
https://pubmed.ncbi.nlm.nih.gov/21997383/
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1 ReactionMy feet burn constantly and its spreading up to knees. I used meds, ice, and elevate legs in couch. I have had biopsy and have Small Fiber Neuropathy in left foot years ago but thank it is spreading. I am allergic to Gabepentin and have gained so much wt. I too pray for research!!
john - thanks for taking the time to compile your resource filled reply. There's so much nutrition and diet information out there, often conflicting, so it's hard to discern what might be best for addressing neuropathy issues. I'll take a look at these links. Thanks again
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1 ReactionDoes anyone experience spasms with the neuropathy?
Welcome @amahoff, Members have shared experiences that may be helpful in the following discussions:
-- Muscle Spams and Neuropathy: https://connect.mayoclinic.org/discussion/muscle-spams/
-- Does Small Fiber Neuropathy also cause muscle spasms?: https://connect.mayoclinic.org/discussion/does-small-fiber-neuropathy-also-cause-muscle-spasms/
Have you been diagnosed with neuropathy?
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