Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy group.

My neuropathy is due to chemo and is numbness. My oncologist sent me to a physiatrist who prescribed anodyne therapy 3 times a week for 4 weeks. Unfortunately, the physical therapy rehab facility that advertised they had this available does not. So far, I have not found one locally that does. I'm wondering if anyone has tried this and if it helped. It appears that I am going to have to go some distance in order to find it available, if at all.

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@suzylulu

I am dealing with neuropathy I have tried gabapetin (spelling?)pills and foot rub. Nothing has worked. It is difficult to walk.

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John, I too was told by a neurologist that my symptoms sound like small fiber sensory neuropathy. I've been on gabapentin for about 5 years, and it's helped me. It's also eased my lower back pain. However, since doing a month of physical therapy, I've been able to cut my gabapentin dosage in half–from 1800mg daily to 900mg. The gabapentin has also almost eliminated the muscle tremors and twitching in my feet and legs–at least I'm attributing all of this to gabapentin. I guess we're all different in how we respond to medication. I should add that I can no longer be as active as I once was or take long walks anymore. If I do, I pay the price later in the evening or the next day with exacerbation of the pins and needles and/or cramps in my feet and legs. What I've learned is that I have to pace myself and try to achieve a balance between exercise and rest, as being too sedentary will aggravate my symptoms also. On the bright side, I'm still ambulatory, can climb stairs, can drive, and don't appear to have any mobility issues, so I can't complain. There are some people who aren't so lucky.

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@cwm1

My neuropathy is due to chemo and is numbness. My oncologist sent me to a physiatrist who prescribed anodyne therapy 3 times a week for 4 weeks. Unfortunately, the physical therapy rehab facility that advertised they had this available does not. So far, I have not found one locally that does. I'm wondering if anyone has tried this and if it helped. It appears that I am going to have to go some distance in order to find it available, if at all.

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Hello @cwm1, welcome to Connect. We are glad you found us. Connect is a good place to share your health story, ask questions and learn what others with similar health issues are doing for treatments. I did a search of Connect and found one post discussing anodyne therapy. I'm tagging a Connect member who shared that they have tried anodyne therapy. @dbentley are you able to provide any information on anodyne therapy with @cwm1 ?

Here are a few sites I found that discuss the treatment:

Does Anodyne Light Therapy Improve Peripheral Neuropathy in Diabetes?
http://care.diabetesjournals.org/content/31/2/316

Effectiveness of the anodyne therapy system in treating diabetic peripheral neuropathy: a systematic review
https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0026052/

I looked into a similar treatment from Realief Neuropathy Treatment Center but decided against it based on conversations I had with the treatment center on possible outcomes vs cost vs number of treatments required before they said I would see results…if any. On the other hand I know of a lady older than myself (and I'm old ☺) to whom money was not a problem and she had many treatments and felt it helped her. I'm just not sold on it.

Hopefully some others will join in the conversation and provide you with more information on the anodyne therapy.

John

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@suzylulu

I am dealing with neuropathy I have tried gabapetin (spelling?)pills and foot rub. Nothing has worked. It is difficult to walk.

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Hello @magg

Thank you for adding your experiences. It appears that you have found ways to balance exercise, rest along with meds to deal with the neuropathy. I appreciate your sharing this. I'm just starting with neuropathy symptoms and I appreciate reading everyone's experiences.

Teresa

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@suzylulu

I am dealing with neuropathy I have tried gabapetin (spelling?)pills and foot rub. Nothing has worked. It is difficult to walk.

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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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@allisonsnow

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?

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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.

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@timmckinney

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.

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@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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@allisonsnow

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?

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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:

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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@timmckinney

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.

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Thanks for your kind words…..grieving is not an easy emotional process. I wish you good outcomes.

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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.

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@prudence

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.

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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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@allisonsnow

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?

Jump to this post

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.

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