Hi Margaret @magg, thank you for sharing what works for you. Like you I've learned that I can no longer do a lot of things I used to be able to do but that doesn't mean I can't do something. I just have to know and understand my limitations and not over do it when it comes to exercise. I too count my blessings every day.
Hoping all my neuropathy friends here on Connect find some answers and something that works for them to get some relief.
what I have is a big ?. It may sound like a stupid ? but what is the difference between diabetic neuropathy and that caused by the chemo I received. They said I may get it and it probably wouldn't go away (it didn't). So when it didn't I wasn't surprised but it has gotten worse. What can I do?
I have had both. I had chemo neuropathy from a series of cisplatin treatments. That caused a lack of sensation or numbness, which resulted in my dropping items if I didn’t focus on consciously holding on to them. I later got diabetic neuropathy, which resulted in occasional itching sensations on the soles of my feet but no pain. That itching is annoying when it occurs while I am driving. It is somewhat relieved by my taking 3600 mg of turmeric.
I am interested in knowing whether continuous and long term use of turmeric would be harmful.
I too suffer with the problem of walking with neuropathy and mine is 100% from the pain aspect. Taking 900 mg of gabapentin 3 times a day to just dumb down the issue. Anymore than 30 minutes walking or standing and I am in serious pain, like crushed glass in my shoes. Used to jog 25-30 miles a week and have run many half marathons and one completely. Really miss being able to be active.
What a wonderful attitude! What you said in your post, " It has been helpful for me to actually grieve for the loss..." is very helpful for neuropathy folks as well as anyone who deals with a new chronic illness. Acknowledging and grieving losses is an important part in moving on. Thank you for that reminder.
what I have is a big ?. It may sound like a stupid ? but what is the difference between diabetic neuropathy and that caused by the chemo I received. They said I may get it and it probably wouldn't go away (it didn't). So when it didn't I wasn't surprised but it has gotten worse. What can I do?
Hi @jeancary -- You ask a good question about continuous and long term use of turmeric and if it would be harmful. I've been taking a 406 mg turmeric capsule with black pepper extract for almost 2 years and think it helps my inflammation a little. I have tried the organic turmeric powder in coffee and tea but don't really like the added taste. From the little research I've found I don't think there have been enough studies done. Here are some of the articles I ran across:
Jean - have you eliminated any other food groups from your diet to help with inflammation? I've tried to cut down on the nightshades but I love tomatoes and peppers so it's not an easy thing for me.
I too suffer with the problem of walking with neuropathy and mine is 100% from the pain aspect. Taking 900 mg of gabapentin 3 times a day to just dumb down the issue. Anymore than 30 minutes walking or standing and I am in serious pain, like crushed glass in my shoes. Used to jog 25-30 miles a week and have run many half marathons and one completely. Really miss being able to be active.
I have neuropathy in my buttocks.
It’s called numb bum wallet bum or bleacher bum
Only mine does not go away if I sit for more than 5 min. I have tried everything. Does anyone have any thoughts I’d really appreciate some feed back.
I have neuropathy in my buttocks.
It’s called numb bum wallet bum or bleacher bum
Only mine does not go away if I sit for more than 5 min. I have tried everything. Does anyone have any thoughts I’d really appreciate some feed back.
Hello @prudence, are you able to share any specific diagnosis for your neuropathy? I'm not familiar but I did a search and found a few other Connect members who have posted about pain in the buttocks.
what I have is a big ?. It may sound like a stupid ? but what is the difference between diabetic neuropathy and that caused by the chemo I received. They said I may get it and it probably wouldn't go away (it didn't). So when it didn't I wasn't surprised but it has gotten worse. What can I do?
Thanks for the information sources. I have eliminated gluten and sugar and artificial sweeteners, for the most part but occasionally have regular ice cream (ie, not sugar free). I’m trying to control my type 2 diabetes by diet and take metformin twice a day, hopefully reducing to zero at some point.
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
I think we all have to find our own relief. In 6 years not one of the 9 specialists I saw has really helped the pain of my peripheral neuropathy. I have idiopathic neuropathy. Numb from toe to knees, sometimes freezing , sometimes burning but chronic pain. I tried cymbalta, gabapentin, anitriptaline. All the side effects were unbearable. The neurology tests showed yes indeed I had it . I had to find my own relief. What works for me is mostly meditation(I had practiced many years before neuropathy,) counselling for anxiety and depression,cannabis for insomnia, Saran Wrap around calves and feet even takes numbness away. Weird but try it. I wish the pharmaceuticals would have worked but I learned a lot and most days am content and happy. When flare up comes ,warm bath and Saran Wrap. Very fortunate for me I live in Canada and we have health coverage. Also we have good pain clinics that teach about pain. I have also found anything that bothers my nerves bothers my emotions as well. Too hot, too cold, too windy, people who antagonize me, dumb politics you name it. gentle and middle way seems to guide me through this terrible disease. Appreciation Charly
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
Hello @charly welcome to Connect. I do agree with you that we all have to find our own relief. I also have idiopathic small fiber peripheral neuropathy but I have no pain with it. I just have numbness and tingling with my neuropathy. When I received my diagnosis, the neurologist told me there is nothing that treats the numbness. All of the drugs on the market that address the pain come with their own associated side affects which can be as bad as the pain itself.
I'm glad you found some treatments that work for you. Thank you for sharing the tip about Saran Wrap. It's something that doesn't cost much and if it works for you it's a great solution.
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Hi Margaret @magg, thank you for sharing what works for you. Like you I've learned that I can no longer do a lot of things I used to be able to do but that doesn't mean I can't do something. I just have to know and understand my limitations and not over do it when it comes to exercise. I too count my blessings every day.
Hoping all my neuropathy friends here on Connect find some answers and something that works for them to get some relief.
John
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1 ReactionI have had both. I had chemo neuropathy from a series of cisplatin treatments. That caused a lack of sensation or numbness, which resulted in my dropping items if I didn’t focus on consciously holding on to them. I later got diabetic neuropathy, which resulted in occasional itching sensations on the soles of my feet but no pain. That itching is annoying when it occurs while I am driving. It is somewhat relieved by my taking 3600 mg of turmeric.
I am interested in knowing whether continuous and long term use of turmeric would be harmful.
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2 Reactions@artscaping Hello Chris,
What a wonderful attitude! What you said in your post, " It has been helpful for me to actually grieve for the loss..." is very helpful for neuropathy folks as well as anyone who deals with a new chronic illness. Acknowledging and grieving losses is an important part in moving on. Thank you for that reminder.
Teresa
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1 ReactionHi @jeancary -- You ask a good question about continuous and long term use of turmeric and if it would be harmful. I've been taking a 406 mg turmeric capsule with black pepper extract for almost 2 years and think it helps my inflammation a little. I have tried the organic turmeric powder in coffee and tea but don't really like the added taste. From the little research I've found I don't think there have been enough studies done. Here are some of the articles I ran across:
Consumerlabs.com - Is it safe to take curcumin or turmeric supplements for a long period of time?
-- https://www.consumerlab.com/answers/is-it-safe-to-take-curcumin-or-turmeric-supplements-for-a-long-period-of-time/curcumin_long_term_safety/
NCBI - Long-term use of an antiinflammatory, curcumin, suppressed type 1 immunity and exacerbated visceral leishmaniasis in a chronic experimental model
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3056242/
NIH - Turmeric
-- https://nccih.nih.gov/health/turmeric/ataglance.htm
Wiley Online Library - The dark side of curcumin
-- https://onlinelibrary.wiley.com/doi/pdf/10.1002/ijc.24967
Jean - have you eliminated any other food groups from your diet to help with inflammation? I've tried to cut down on the nightshades but I love tomatoes and peppers so it's not an easy thing for me.
John
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2 ReactionsThanks for your kind words.....grieving is not an easy emotional process. I wish you good outcomes.
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2 ReactionsI have neuropathy in my buttocks.
It’s called numb bum wallet bum or bleacher bum
Only mine does not go away if I sit for more than 5 min. I have tried everything. Does anyone have any thoughts I’d really appreciate some feed back.
Hello @prudence, are you able to share any specific diagnosis for your neuropathy? I'm not familiar but I did a search and found a few other Connect members who have posted about pain in the buttocks.
@robertlclark @jimbourg8 @lisaw are you able to share any thoughts or information with @prudence
I did a search on neuropathy in the buttocks and the following link that may be helpful or offer more information.
Diagnosis and Management of Piriformis Syndrome: An Osteopathic Approach
-- http://jaoa.org/article.aspx?articleid=2093614
@prudence can you share what you have tried for treatments to help the neuropathy in the buttocks?
John
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1 ReactionThanks for the information sources. I have eliminated gluten and sugar and artificial sweeteners, for the most part but occasionally have regular ice cream (ie, not sugar free). I’m trying to control my type 2 diabetes by diet and take metformin twice a day, hopefully reducing to zero at some point.
-
Like -
Helpful -
Hug
2 ReactionsI think we all have to find our own relief. In 6 years not one of the 9 specialists I saw has really helped the pain of my peripheral neuropathy. I have idiopathic neuropathy. Numb from toe to knees, sometimes freezing , sometimes burning but chronic pain. I tried cymbalta, gabapentin, anitriptaline. All the side effects were unbearable. The neurology tests showed yes indeed I had it . I had to find my own relief. What works for me is mostly meditation(I had practiced many years before neuropathy,) counselling for anxiety and depression,cannabis for insomnia, Saran Wrap around calves and feet even takes numbness away. Weird but try it. I wish the pharmaceuticals would have worked but I learned a lot and most days am content and happy. When flare up comes ,warm bath and Saran Wrap. Very fortunate for me I live in Canada and we have health coverage. Also we have good pain clinics that teach about pain. I have also found anything that bothers my nerves bothers my emotions as well. Too hot, too cold, too windy, people who antagonize me, dumb politics you name it. gentle and middle way seems to guide me through this terrible disease. Appreciation Charly
Hello @charly welcome to Connect. I do agree with you that we all have to find our own relief. I also have idiopathic small fiber peripheral neuropathy but I have no pain with it. I just have numbness and tingling with my neuropathy. When I received my diagnosis, the neurologist told me there is nothing that treats the numbness. All of the drugs on the market that address the pain come with their own associated side affects which can be as bad as the pain itself.
I'm glad you found some treatments that work for you. Thank you for sharing the tip about Saran Wrap. It's something that doesn't cost much and if it works for you it's a great solution.
John