Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

I had two back surgeries to relieve the impengment on my nerves near L4 – L5. It helped a lot but have pain and numbness in my left leg and foot. I think the surgeries help me quite a bit.

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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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It is difficult walking because of the numbness. I tried gababentin for only 2 months. Does it take longer to help?

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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.

Jump to this post

Hello @suzylulu

I have not started taking Gabapentin myself so I can't tell you how long it would take to make a difference. You might check with your pharmacist or your doctor and see what they have to say about that.

As I understand from your last post you don't have pain – just numbness in your feet?

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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@allisonsnow Hi Allison,

There are no stupid ?s on Connect. I really don't know the difference between the neuropathy caused by diabetes and the one caused by chemo. Is the neuropathy you have numbness or pain or both?

Here is an article from Mayo Clinic about chemo related neuropathy. Perhaps this will give you some information that you can use when you talk with your doctor.
http://www.mayo.edu/research/labs/regenerative-neurobiology/projects/chemotherapy-induced-peripheral-neuropathy-cipn
I look forward to hearing from you and finding out if you have come up with any solutions.

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 Allison @allisonsnow, I'm with Teresa @hopeful33250. There are no stupid questions. I really don't think there is a difference from the patient's perspective. I have no medical background or training but neuropathy is caused by nerve damage of some sort which can be caused by many different things. Here are a few more references that may help explain and answer some of your questions.

National Institutes of Health site – Peripheral Neuropathy Fact Sheet:
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

Chemotherapy-induced peripheral neuropathy: an update on the current understanding
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4920214/

This site has an easy to understand and read answer to your question:
Is there any difference between Diabetic Neuropathy and other forms of Neuropathy?
http://mcvitamins.com/health%20articles/diabetes-non-diabetic-neuropathy.htm

Allison can you share if you've made any changes or tried any treatments to help with your neuropathy?

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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Hi @suzlulu,
I was put on gabapentin for a month before I went back to my Mayo doctor and told her it wasn't working. That was before I met with the neurologist and was diagnosed with small fiber peripheral neuropathy. I only have numbness and tingling with my neuropathy. I do not have the bad pain that others have. When I told my doctor it wasn't working she had a consult with another doctor who came in and asked about my symptoms. When I told him no pain only numbness he immediately said gabapentin only works for pain by blocking the pain signals in the brain. That's when they setup an appointment with a neurologist. After I met with the neurologist he told me there are no medications or over the counter topical creams/ointments that help with numbness. This is what started me on my search for something that would help me and how I found Mayo Connect.

I would have a discussion with your doctor about gabapentin. If you are not having pain with the neuropathy, I don't think there is a reason to take the medication.

Have you found anything that helps you or tried anything for treatments?

John

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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.

Jump to this post

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?

Jump to this post

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?

Jump to this post

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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