Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

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

@flipflop52

Hi! I know nothing will cure neuropathy but did the reflexology help to some extent? Know everyone is different so just curious as to how it works for you?

Thanks! 😎

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It didn’t stop the tingling in my feet, but it felt good to get the massage.

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I am writing this to hopefully pass my experience forward! I believe I have idiopathic peripheral neuropathy in my feet especially my toes. I have had numerous tests and seen particularly spine docs. MRI suggest it is from a mild case of spinal stenosis? Ironically my back doesn’t hurt now though I have had bouts of Sciatica! Ok enough about my condition. The spine docs wanted to treat me with Gabapentin and then spinal shots. I tried the Gabapentin briefly but had terrible headache and nausea. My advice try to stay away from drugs. They only dull the symptoms but make you feel like a zombie! Ok now the good news I have found a number of natural remedies that work for me. As you probably know by now there is no cure for this condition as of yet but these remedies might help you. I have a protocol I use: (1) And n the morning I rub Frankincense and Myrrh oil on my feet; (2) I slip on compression sleeves (open toes) on my feet and ankle; (3) At breakfast I take a vitamin supplement containing B-complex especially B-12 and ALA(Alpha Lapoic Acid). It took me at least 4 months to see significant changes but now I am all most pain free. Good luck to all.

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I can't remember if I have shared this in this group or not yet. If I have, I apologize in advance. Someone suggested to try Vicks Vapor Rub on my feet and legs to help with neurotherapy. It helped somewhat but I added Lidocaine in the mix. Happy to say that this concoction has worked for the last two nights.

Also let me add...I do take Gabaplatin 3x a day and Duloxetine 1x a day.

I hope everyone can find their perfect mix.

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@roslyn

It didn’t stop the tingling in my feet, but it felt good to get the massage.

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I had the same response.

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@roslyn

It didn’t stop the tingling in my feet, but it felt good to get the massage.

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I wanted to share my experience in hopes that it helps someone else. I developed severe neuropathy in my hands and feet after chemotherapy for breast cancer. I talked to doctors and looked online, but found no clear guidelines for relief. After trying for over a year with no improvement, I went researching again online. NIH had an article about supplement use, and mentioned studies but did not give clear guidance. But hearing about studies, I went digging again. I found a study by the Cleveland Clinic that got good results with 300 mg of CoQ10 and 20 mg of PQQ daily. I have been using this combination for a year now and things have improved dramatically. My finger tips no longer feel burnt, just a little numb. I cannot tell you the joy I felt when I took off my shoes and felt the floor for the first time. I still have discomfort in my feet, but much improved and no longer hurts to walk. The one symptom that doesn’t feel much better is the feeling of sand between my toes. My doctor had been monitoring my progress and is as pleased as I am. This may not work for everyone, and it’s definitely not an overnight cure, but most of the pain was gone in three months. I can only say what it’s done for me. Stick with it, again it’s not a quick fix, but you should start getting relief after a couple of weeks. What was important to me is that this isn’t just another pain reliever that I’d have to keep taking forever. It’s a cute that has stopped my reliance on pain meds. With Hope. Janet Davis

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@flipflop52

Hi! Love your statement about accepting your pain each morning! It is such a good point as there seems to be no cure for neuropathy so mental attitude and trying different things to help yourself is so important! I will continue to share what I try in hopes it helps someone else!

Each day is a gift! 🦋

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Do you take any medicine? If so what do you take? I’m taking Gabapentin and Cymbalta but I’m not diabetic. The pain is unbearable. I can find any relief.

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@rwinney

Good morning @ graysea. Congratulations on doing breathing exercises! Diaphragmatic "belly breathing" is such a bonus in helping calm your nervous system down. Do you practice breathing exercises throughout the day? I used to do belly breathing only when I was at peak pain, but I've learned that scheduling breathing throughout the day helps it become more routine, natural and effective. It really has helped. I even do it in the car at stop lights.

You mention wishing you could exercise while you sleep. Now that would be interesting. My morning stretches are a lifeline, and my body depends on them. What form of exercise do you do? While you're awake that is? 😄 Do you have an exercise routine?

I'm sorry about your fiasco with Gabapentin. No fun. I hope you get situated soon and find stable relief. Will your doctor try Pregabalin (Lyrica) instead?

Mantras are similar to what you said you read...positive quotes and stories. Here's some info on mantras:

"What is a mantra and how is it used?
Mantras are one way to practice mindfulness because we focus on a word or phrase as a way to calm and center the mind. In this sense, mantras help us slow down our brains and allow for more space in breath, mind, and body. Mantra is a Sanskrit word that loosely translates to “vehicle of the mind.”"

You can use a mantra while you are practicing your breathing by reminding yourself of a positive quote that you wish to believe. Muscle memory plays a role.

Meditation, breathing and mindfulness can be all tied together. I like to read positive daily mantras for inspiration and to keep me centered. Believe it or not, I never did any of this stuff until I was forced to find ways of counting on myself for pain management. My friend and fellow mentor @artscaping promoted mindful meditation when I first arrived on Connect. She taught me to welcome pain every morning because it would be my shadow and we'd have to learn to live together. At first, I thought she was craaazzyyy!

Remind yourself that all the meds and doctors in the world can't fix or cure "chronic". They can play a helpful role, but we must assume a part in helping ourselves.

I hope your husband found a wordsearch app. Good for you for staying focused and wanting to help yourself. It's a tall order, but mindset is a very powerful tool. What's next on your list of self-help tools?

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Please Lear know what happened with the Gabapentin fiasco. That’s what I’m taking.

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Does anyone have a diet or take Vitamins for neuropathy? I know sugar makes it worse and my GI doctor had me on a Gluten Free Diet. Gluten Free means full of sugar.

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@jldavis823

I wanted to share my experience in hopes that it helps someone else. I developed severe neuropathy in my hands and feet after chemotherapy for breast cancer. I talked to doctors and looked online, but found no clear guidelines for relief. After trying for over a year with no improvement, I went researching again online. NIH had an article about supplement use, and mentioned studies but did not give clear guidance. But hearing about studies, I went digging again. I found a study by the Cleveland Clinic that got good results with 300 mg of CoQ10 and 20 mg of PQQ daily. I have been using this combination for a year now and things have improved dramatically. My finger tips no longer feel burnt, just a little numb. I cannot tell you the joy I felt when I took off my shoes and felt the floor for the first time. I still have discomfort in my feet, but much improved and no longer hurts to walk. The one symptom that doesn’t feel much better is the feeling of sand between my toes. My doctor had been monitoring my progress and is as pleased as I am. This may not work for everyone, and it’s definitely not an overnight cure, but most of the pain was gone in three months. I can only say what it’s done for me. Stick with it, again it’s not a quick fix, but you should start getting relief after a couple of weeks. What was important to me is that this isn’t just another pain reliever that I’d have to keep taking forever. It’s a cute that has stopped my reliance on pain meds. With Hope. Janet Davis

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Thanks. Nothing has helped me. I had radiation. I will try this.

Sent from my iPhone

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@pamelaz

Do you take any medicine? If so what do you take? I’m taking Gabapentin and Cymbalta but I’m not diabetic. The pain is unbearable. I can find any relief.

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Hi! I take the Cymbalta but very low dose. Did not want to try Gabapentin. Not diabetic either. I don’t have pain all the time. Shooting shock episodes or creeping type discomfort. My feet just feel terribly dry and ache at times. Plus, they are numb. At night I take Tizanidine at night to take edge off so I can sleep. Listen to music in bed and rub feet, legs and calves with Frankincense and Myrr. I googled feet and hand exercises and found things to do when watching TV. Going to try reflexology massages in about 4 weeks! My doctor gave me a prescription for Lidocaine cream -30 mg. Have not tried it yet as my pain episodes are tolerable.

Hope this helps! 🙏

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