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?

@pfbacon

That's a lot. I hope that brilliant researchers get busy inventing better medicine for us. When anything new is invented, we'll hear about here before we hear about it anywhere else, right? (To me, "Better" means something that takes away the pain and numbness but doesn't make us sleepy or fat).

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I would love the fat part. I weighed between 162 and 168lbs for over 30 years then the wasting part of Parsonage Turner Syndrome and I'm 89lbs. I still can walk but tire easily. Unable to sit for more than a few minutes.

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@friendz4 Remember Steroids in abundance will harm your liver @kidneys so be careful with the amount you get A Endocrinologist , Neurologist can help you just suggesting

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I know I aonky took them 3 times in my life because I have awful side effects from them

Liked by lioness

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@friendz4 Glad to hear this I to can't take alot of meds or high mg. instead I do holistic remedies

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I've tried all the holistics, did nothing. None of my doctors have mentioned taking steroids for neuropathy. I've taken them for asthma and had bad side effects: bloating, nervousness, metallic taste in the mouth, thrush.

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@pfbacon See what your Neurologist says I wouldn't take steriords for this since you,ve had bad side effects before.

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@johnbishop

Hello @deenie07, welcome to Mayo Clinic Connect. I have no medical training or background but the pain may be caused by nerve damage or compression of a nerve near the ankle. I think it would be good to discuss it with your foot doctor at your upcoming appointment. Have you had an injury to the ankle?

The Arthritis Foundation has some information on treating ankle pain that might be helpful.
https://www.arthritis.org/about-arthritis/where-it-hurts/ankle-pain/treatment/

You mentioned it felt better after a couple of weeks of taking anti-inflammatory medication but then got worse. Is your ankle still swollen or was it swollen?

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No, not swollen. No injury. I am also thinking compression of a nerve in the ankle.

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@lioness

@friendz4 Glad to hear this I to can't take alot of meds or high mg. instead I do holistic remedies

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What have you found for holistic that I could try I take a lot of suppluments now

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@friendz4 Put your feet on ice for awhile then rest ten heat ,stretching feet wiggle ankles leg exercises, Tapping .com is a good one I use maybe soak your feet in Epsom salts ? Since I don't have neuropathy in my feet these are some of the tools I use for my problems but won't hurt to try

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@lioness

@deenie07 Welcome as John said We have chair exercises where I live,senior independent living .A friend of mine has neuropathy said in her feet firat time she did these exercises she raved abojt how it has helped her feet and ankles .Have you done feet exercises ? You tube has chair exercises you can do.

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Thanks for the tip.

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@lioness

@friendz4 Put your feet on ice for awhile then rest ten heat ,stretching feet wiggle ankles leg exercises, Tapping .com is a good one I use maybe soak your feet in Epsom salts ? Since I don't have neuropathy in my feet these are some of the tools I use for my problems but won't hurt to try

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I have been icing…….also soaking in tepid water with a couple drops of ginger essential oils. That gives me a couple hours of relief. Will check out Tapping.com

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@brucea

Do not go to any run of the mill neurologist. They can have you running in circles. Make sure he/she is a specialist in your particular area. I wasted one year on a neurologist and now am seeking one who can actually help me feel better – and who cares. Good luck.

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Thanks.

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@johnbishop

Hello @deenie07, welcome to Mayo Clinic Connect. I have no medical training or background but the pain may be caused by nerve damage or compression of a nerve near the ankle. I think it would be good to discuss it with your foot doctor at your upcoming appointment. Have you had an injury to the ankle?

The Arthritis Foundation has some information on treating ankle pain that might be helpful.
https://www.arthritis.org/about-arthritis/where-it-hurts/ankle-pain/treatment/

You mentioned it felt better after a couple of weeks of taking anti-inflammatory medication but then got worse. Is your ankle still swollen or was it swollen?

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Thanks for the arthritis info.

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@friendz4

I have tried everything, I use Ebanel numb 520 it’s lidocaine 5% in a cream you can buy it on amazon or Ebanel direct site,it can be used 6 times a day I found it to be the best

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I ordered this. Reasonable cost. Thanks for the advice.

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@lioness

@pfbacon See what your Neurologist says I wouldn't take steriords for this since you,ve had bad side effects before.

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Good advice — thanks. Peggy

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