Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

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

@partner

Thank you the welcome. I am 86 years young and was diagnosed with neuropathy 40 years ago. Since then 25 years aginI diagnosed with chronic back pain due to trapped and seized nerves. Last year I was a candidate for back surgery but it was discovered I had osteoporosis even in my jaw bones and the bones were not struck enough to hold the screws. I am never without pain, have tried Lyrica, endep, and pregablin for the nerve pain but they all interfered with my head I was foggy headed all the time. A naturopath I consulted recommended Tumeric and Lipoec but here in Australia the latter is very hard to purchase. Is there anything else? My GP is inclined to downplay the pain I have and is inclined to put all discomfort down to the back issues. Even though I have physio weekly, an hour’s exercise every morning and a 20 minute or walk every day I do not know what else to do. I am gradually losing mobility. I am not looking for a cure, that would be great but how to manage my condition. Thank you for the opportunity to describe my health issues,
K e

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Hello @partner, Welcome to Connect. I love your statement - I am 86 years young. Attitude and gratitude are everything when battling long term conditions. The Foundation for Peripheral Neuropathy has a list of supplements that have shown to be helpful for neuropathy here - https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf. The supplements are listed at the end of the document. They also have information on living well with neuropathy that you might find helpful here - https://www.foundationforpn.org/living-well/.

It sounds like you already have a great daily exercise regimen. There is another discussion you might find helpful if you want to add some strength training.
-- Strength training: How-to video collection
https://connect.mayoclinic.org/discussion/strength-training-how-to-video-collection/.

You mentioned it's hard for you to purchase an Alpha Lipoic Acid supplement. Are you able to order supplements online and have them shipped to you or do you have to drive somewhere to get them?

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@johnbishop

Welcome @decrepit, Such great advice about doing some homework prior to getting treatments for neuropathy. There are a lot of businesses out there selling hope in the form of a cure for neuropathy when there is none. We just have to find something that provides relief from our neuropathy symptoms.

@duquer also shared his story of how Sanexas helped him and may have some thoughts or suggestions. He shared his story here - https://connect.mayoclinic.org/comment/645606/.

You mentioned PT treatments. Have you had any PT sessions to help you work on strength building?

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As a retired 41 years in healthcare, I followed my health care team recommendations to the letter. Wilde physical therapy was good to keep my muscles, someone stronger, physical therapy, and no affect on the neuropathy, pain, pins, and needles etc. I found that undergoing the Sanexas treatment it gave me some very good results.

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I was told I had CRPS which expresses itself with increasing numbness and painful tingling in my lower extremities. How can I beat this?

...to continue to give a picture of the last 4 years, I've also been told I have idiopathic small fiber neuropathy.
I've had trouble with my spine (scoliosis since adolescence) which finally lead to severe pain that did not respond to my various non-surgical treatments over the years, so a little over a year ago I had an ALIF/PLIF spinal fusion S-1 to T-10.
I am an active 71 year old female. I'm finally back on the tennis courts with my friend, but I numbness and pins and needles pain can be difficult at times. I would like to stop taking the medications I've been prescribed, but the pain is to great to try to ignore.

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My feet are numb and my balance is very bad. Does it ever go away?

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@chawkers

My feet are numb and my balance is very bad. Does it ever go away?

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Welcome @chawkers, Does it ever go away is the question that I don't think anyone can answer. I'm not a medical professional but I think the key is to live each day the best you can and seek answers and treatments that will provide some relief for your symptoms. I have numbness with my neuropathy but no pain and have had it for over 20 years. My balance is not very good but I try to work on it as much as I can. There is another discussion that you might find helpful if you only have numbness:
--- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/.

Here's another site you where you might find some helpful information:
--- Living Well - The Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/.

Are you able to share a little more about your diagnosis and any treatments you've tried?

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@julbpat

Your last paragraph makes me sad, because walking in nature, along with gardening, are my main sources of pleasure. A year ago I did a 2 mile hike near my house once a week. I also prepped and planted all my flower beds.
I last tried the hike a month ago (sheer stubbornness) and it was painful from the first step. I grimly pushed on. I’ve also tried walking in my neighborhood recently, just a mile. Every body part involved in walking, from my waist down, hurts the entire time. Of course I was in a lot of pain for several days afterward, worse than usual. Hobbling. Struggling to get up steps.
This is a progressive disease. It sucks.

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I lost the use of my legs last MAY. This followed a tremendous spinal pain in the middle of the night, I shouted, I cried. I can transfer in/out of my wheel chair. I cannot stand or walk. One Dr suspected CAUDA EQUINA. My spine clinic went ballistic when I mentioned this. The Dr. Lied and said that CE was never mentioned with her, after spelling CAUDA EQUINA on the back of her business card. My pain clinic has spent hours trying to convince me that all my problems result from NEUROPATHY. I may try the Mayo Clinic for a diagnosis.

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Has anyone lost the use of their legs from Neuropathy?

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@gemini1505

Has anyone lost the use of their legs from Neuropathy?

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I did, rather suddenly from idiopathic PN. My legs felt weak and heavy one day then when hospitalized 10 days later because my balance was in danger, I finally fell and couldn’t get up (for 6 months). I was transferred to a nursing home/rehab center in a wheelchair, where I had a great pair of PT’s helping me start over with my feet and hands. It was hard work, and after a month was sent home, where I had therapists in my home a few days a week, and plenty of daily exercises. That transitioned to outpatient PT, which at the 6 month mark from onset of PN, I was back on my feet (mostly with walker for safety), but walking unassisted inside my home. I was able to start driving! They helped me so much get strength, learn to balance, and ways to cope and improvise as my condition needs for me to be able to do things. I suppose by all counts my Neuropathy itself didn’t improve, but I made muscles stronger and had a lot of forced standing so I could literally get back on my feet. 6 years later, I could probably walk or shuffle a mile unassisted, though my legs and knees would tire. With that said, it is imperative that I keep exercising, moving, and maintaining strength if I hope to offset any deterioration, if that is to come.

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I have severe neuropathy and take BOTH Gabapentin AND Lyrica. I have taken Gabapentin, probably too long. The Lyrica is a recent addition. I am 83 years old. Neurologist sez that for my age, I am on the maximum G. dose. I STILL am not getting any kind of relief. I so look forward to bedtime where I can stretch out but NOW, I have screaming Sciatic pain in both legs. At the beginning, I suffered only at night but now it is almost with every step. I have had multiple Physical Therapy sessions for balance issues. I have been tethered to a walker for the past few years following a spiral fracture of my right tibia. I am loaded with metal. Spinal fusions 20 years ago on lower back. More recent neck surgery. This is getting to be a real 'Pain-in-the-Arse for a play on words and trying to maintain a sense of humoor!! What to do??

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@johnbishop

@suzylulu, thank you for the kind words! I think one of the real benefits of Mayo Connect is that it brings patients together in a safe place so that they are able to share their story, learn what others are doing and ask questions they may have. I found Connect in March of 2016 while searching for help and local support groups for my peripheral neuropathy. I'm so glad I did too.

Thanks again - keep sharing and asking questions - life is a learning journey! Psst...my motto is to learn at least one new thing a day. Sadly that one new thing is sometimes something I had learned in the past. That's a great thing about being 74...senior discounts and no one expects you to remember everything!

John

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hello, am new here. have had neuropathy for many years now. didn't know what it was when a little numbness or some light pain would bother me till one day ibuprofen wouldn't handle it any more. went to medfast and finally a dr there told me I had periferal neuropathy and said should have been diagnosed years ago. prescribed tramadol and have been taking it for 13 years now. 2 years ago had the needle test done and was told didn't have peripheral but had small fiber neuropathy. any one here also have that?

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