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?

@cocodab

Also when and if possible I try to eat well. I find that helps. I also take some supplements. Who knows I fi

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How about you? What seems to help?

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Talking about eating well yes usually do but really have sugar cravings. Like really bad. Does anyone else? Don’t really understand?

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@cocodab

Talking about eating well yes usually do but really have sugar cravings. Like really bad. Does anyone else? Don’t really understand?

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@cocodab — I have the same cravings for sugar but I really try to avoid it along with alcohol as both make neuropathy worse. I've stopped eating most processed foods and have eliminated fast foods which used to be a big problem for me. I started looking at nutrition after reading a book – The Wahls Protocol by Dr. Terry Wahls. She has an amazing story of curing her symptoms of MS through diet and nutrition. Her story — https://terrywahls.com/about/about-terry-wahls/. I still struggle a little but at least I'm now looking at what I put into my body. ☺

I take some supplements which help my neuropathy — mainly I believe it's slowing or has stopped the progression which I was worried about when I first started searching on what might help. My story is posted earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I also keep a short saying I found close by as a reminder for me…

Diet…
Every time you eat or drink,
You are either feeding disease
or You are fighting it.
The choice is Yours….

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@johnbishop

@cocodab — I have the same cravings for sugar but I really try to avoid it along with alcohol as both make neuropathy worse. I've stopped eating most processed foods and have eliminated fast foods which used to be a big problem for me. I started looking at nutrition after reading a book – The Wahls Protocol by Dr. Terry Wahls. She has an amazing story of curing her symptoms of MS through diet and nutrition. Her story — https://terrywahls.com/about/about-terry-wahls/. I still struggle a little but at least I'm now looking at what I put into my body. ☺

I take some supplements which help my neuropathy — mainly I believe it's slowing or has stopped the progression which I was worried about when I first started searching on what might help. My story is posted earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I also keep a short saying I found close by as a reminder for me…

Diet…
Every time you eat or drink,
You are either feeding disease
or You are fighting it.
The choice is Yours….

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I love that saying !!

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@dancermurphy

I love that saying !!

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Wow!!! Going to put that on my refrigerator. So true!!!

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@johnbishop

@cocodab — I have the same cravings for sugar but I really try to avoid it along with alcohol as both make neuropathy worse. I've stopped eating most processed foods and have eliminated fast foods which used to be a big problem for me. I started looking at nutrition after reading a book – The Wahls Protocol by Dr. Terry Wahls. She has an amazing story of curing her symptoms of MS through diet and nutrition. Her story — https://terrywahls.com/about/about-terry-wahls/. I still struggle a little but at least I'm now looking at what I put into my body. ☺

I take some supplements which help my neuropathy — mainly I believe it's slowing or has stopped the progression which I was worried about when I first started searching on what might help. My story is posted earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I also keep a short saying I found close by as a reminder for me…

Diet…
Every time you eat or drink,
You are either feeding disease
or You are fighting it.
The choice is Yours….

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Thought maybe you guys might be interested in this article. Look at the section about checking your mineral levels. I hope it might help somebody.
https://www.foxnews.com/health/9-ways-to-eliminate-sugar-cravings

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@qball2019

Thought maybe you guys might be interested in this article. Look at the section about checking your mineral levels. I hope it might help somebody.
https://www.foxnews.com/health/9-ways-to-eliminate-sugar-cravings

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The first one is a biggie…nix the artificial sweeteners.

Artificial sweeteners: sugar-free, but at what cost?
https://www.health.harvard.edu/blog/artificial-sweeteners-sugar-free-but-at-what-cost-201207165030

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Yes great article and protein might be a issue I mt to address and recently wondering if even zinc might be low because of cracking nails.

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@cocodab

I despise being in the car as driver or passenger because of terrible outcomes I have experienced. Causes me extreme pain, numbness, tingling to a point of getting migraines and throwing up. I limit moving too much and also not moving enough. It’s crazy.

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@cocodab
I completely understand! I go through the same thing. I don't know what your ailments are but is there a possibility that you might have a low pressure headache? That's what I have. Just being in an upright position for too long, bending over, etc. causes the headache to intensify, I get a lot of pressure behind my eyes, ringing in my ears, blurry vision, and then I get nauseous. The only thing that helps is to lay down flat and close my eyes.

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I’ve had peripheral neuropathy for seven or eight years, been tested in many wars, take gabapentin, but for me marijuana and sleep helps most with the constant pain, between three and eight. Does anyone else get relief from Cannabis?

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I'm new to this group and not sure how to make an official post/question yet? Due to my symptoms/issues – intermittent short cramp or pinching pain in calves, occasional upper thigh, biceps, wrist and hand, muscle spasms, jaw and neck tenderness, etc. my MD has requested an EMG test. What should I expect from this test, is it painful? If I don't show signs of weakness or muscle loss will an EMG be the appropriate test? I also have Adhesive Capsulitis which is getting better but for some can cause body exhaustion, muscle spasms, etc. I'm on here as I don't have a clear diagnosis, some say/seem like Lyme, fibromyalgia like symptoms but I'm thankful that I'm able to keep moving and hope I don't get dreadful news but I want my body back as it was. Any insight appreciated. – Amy

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I'm Crystal and I may have parsonage turner syndrome( diagnosis this week) and a poly neuropathy diagnosis 6 months ago.

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@gdowns

I’ve had peripheral neuropathy for seven or eight years, been tested in many wars, take gabapentin, but for me marijuana and sleep helps most with the constant pain, between three and eight. Does anyone else get relief from Cannabis?

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Hi @gdowns, welcome to Connect. I've had small fiber peripheral neuropathy for 20+ years but I only have the numbness with no pain. I'm glad you are able to get some relief from the pain. I'm hoping other members with experience will be able to respond to your question. I found the following article that you might find helpful.

Foundation for Peripheral Neuropathy – Medical Marijuana for Peripheral Neuropathy
https://www.foundationforpn.org/2019/05/14/medical-marijuana-for-peripheral-neuropathy

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@aeg73

I'm new to this group and not sure how to make an official post/question yet? Due to my symptoms/issues – intermittent short cramp or pinching pain in calves, occasional upper thigh, biceps, wrist and hand, muscle spasms, jaw and neck tenderness, etc. my MD has requested an EMG test. What should I expect from this test, is it painful? If I don't show signs of weakness or muscle loss will an EMG be the appropriate test? I also have Adhesive Capsulitis which is getting better but for some can cause body exhaustion, muscle spasms, etc. I'm on here as I don't have a clear diagnosis, some say/seem like Lyme, fibromyalgia like symptoms but I'm thankful that I'm able to keep moving and hope I don't get dreadful news but I want my body back as it was. Any insight appreciated. – Amy

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Hi Amy @aeg73, I've had several EMG tests and felt some discomfort but not what I would call real pain. Others maybe able to share their experience with you also. Mayo Clinic has some information on the test and why it's done here:

Electromyography (EMG)
https://www.mayoclinic.org/tests-procedures/emg/about/pac-20393913

As far as how to make an official post/question — you did great! I would keep asking questions and learning as much as you can about your health conditions. It will help you ask better questions when meeting with your doctors and hopefully lead to a better diagnosis/treatment.

Here are a couple of other discussions that you might find helpful:

> Groups > Bones, Joints & Muscles > Frozen shoulder (adhesive capsulitis) but is it something else?
https://connect.mayoclinic.org/discussion/frozen-shoulder-adhesive-capsulitis-but-is-it-something-else/

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@aeg73

I'm new to this group and not sure how to make an official post/question yet? Due to my symptoms/issues – intermittent short cramp or pinching pain in calves, occasional upper thigh, biceps, wrist and hand, muscle spasms, jaw and neck tenderness, etc. my MD has requested an EMG test. What should I expect from this test, is it painful? If I don't show signs of weakness or muscle loss will an EMG be the appropriate test? I also have Adhesive Capsulitis which is getting better but for some can cause body exhaustion, muscle spasms, etc. I'm on here as I don't have a clear diagnosis, some say/seem like Lyme, fibromyalgia like symptoms but I'm thankful that I'm able to keep moving and hope I don't get dreadful news but I want my body back as it was. Any insight appreciated. – Amy

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@age73

First, I'd like to welcome you to our group.
We are not medical professionals, so all we do is share OUR OWN experiences and research.
This is the place to share, ask questions, laugh, cry and anything else you need or want to do.
We are here for you!

Now for your first question about the EMG.
I will NOT lie to you.
My experience is that they are painful.
Will you jump out of your seat or feel like you are going to die?
That, my friend, depends on your pain tolerance.
Once the test is over, so is the discomfort.
The EMG is looking for nerve issues.
By this test, your doctor can tell which nerve is impacting where (if any).
This might either diagnose a problem, where the problem is coming from and help to develop a plan of action.
Or, it might not show anything, which means your doctor might want further testing.

Now, as for HOW the test is done…
It might be different in different places as technology changes.
A technician (or doctor), specially trained, will do this procedure.
You go into a room and change into a gown.
No socks since they will probably check your feet.
You lay down on an exam table.
Electrode-type things are put on you.
The other end is attached to some sort of a data collection piece of equipment.
Little shocks will be placed in different areas (they feel like little needles).
Then, there is another part which for the life of me I cannot remember.
Before the test, feel free to have an explanation of how the test is done and what they are looking for.

You are your best advocate.

Good luck!
Perhaps someone else can fill in the missing pieces, add or correct.

Ronnie (GRANDMAr)

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