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Living with Neuropathy - Welcome to the group

Posted by @colleenyoung, Jul 14, 2017

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?

REPLY

@quiteachiver75

Hello 👋 I am from Australia 🇦🇺 and have just started on this journey of discovery. This week I learnt a bit about what is happening. Still in shock, and not wanting to believe it. I hope 🤞 I will hear from you if not I do understand. I am living in QLD Thanks Teresa

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Hello @quiteachiver75 — I think you are feeling what a lot of us have felt when we come to grips with the realization of our diagnosis. I didn't want to believe either. If the truth be told, I purposely ignored my neuropathy symptoms for almost 20 years before getting a diagnosis. I knew my toes and feet were numb and tingly for a reason and the doctor told me it's probably nerve damage. After I asked if they run the tests and find out it's nerve damage what can they do. The doctor said not much so that started my journey of ignoring and my wait and see attitude. When the numbness started progressing I decided I needed to know more and that started my journey here on Connect looking for support and learning as much as I can about my condition.

Pssst…right now I would be happy to be living in QLD. I'm old, cold, and tired. Of course I just finished my morning exercise routine on the elliptical so maybe that's part of it.

Are you trying to find answers for specific health questions or treatments?

IMG_0096

Liked by johnhans, teetee7

YesterdayI got a numbing shot on my head it worked for8 hours and then I had a really bad attack which I burning tingling and other symptoms. And I took some CBD oil they gave me of relief. But the pain specialist did put me on another nerve relief medicine it supposed to help my head hopefully that works.

@anniemae

John, thank you for this information. I have had several tests so will look this information up. Anniemae

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Has anyone ever noticed with the weather changes that it affects more tingling? Maybe it is just me.

@anniemae

Has anyone ever noticed with the weather changes that it affects more tingling? Maybe it is just me.

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Nope @anniemae, it's not just you ☺

Liked by teetee7

@anniemae

Has anyone ever noticed with the weather changes that it affects more tingling? Maybe it is just me.

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@anniemae Oh yes my dear, the barometric pressure can wreck havoc with the issues that I have…. chronic Myofascial pain, accompanied by Small Fiber Neuropathy (SFN), There is a feeling of tightness and discomfort when it drops below 30. There should be some value in knowing the answers to how and why this happens. Today’s frigid high winds with low pressure may mean that this is a stay home and protect yourself day. That is what my body is telling me right now. Be safe, protected, and free of suffering today. Chris

I love the photo of the squirrel. I haven't noticed weather affecting me but I'll pay attention. Running helps temporarily: if my medicine is due at 2:30 but it's 1:30 and I'm uncomfortable, I can run for an hour and make it til 2:30. Too bad I can't run 16 hours a day. Can we post photos here? I've taken pretty photos of the sun rising over the Atlantic Ocean. I have been sick, congestion in my chest, I'm taking anti-biotics. I had a scary time in the ER, I'm tired of struggling. They did a CT Scan, they think I had a small stroke. I don't. I'm writing my autobiography, just the funny parts, no whining or exposing anyone. Peggy

I’m 28 and have overly sensitive and at times burning like pain in my palms with bone type aches and stiffness in my wrists forearms and fingers and thumb. I am type one diabetic and have been for 12 years.

I mean it’s possible it’s a flare up of a undiagnosed arthritic condition or musclular in nature as I am having severe shoulder pains and upper back and neck pains also. Just always thought in diabetic neuropathy the legs and feet were the first affected not the hands. Just at a loss of what to do

Hi Linda @lindachakra, welcome to Mayo Clinic Connect. I thought I would answer your private message here in the Living with Neuropathy – Welcome to the group discussion so that you can meet other members who share your symptoms.

You can read my story and how I've been helped in the following post on Connect:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Update to my story above: The closed Facebook group I found that has helped me now has a website with links to order over the counter vitamins and supplements as well as a link to join their Facebook group. I would recommend joining the Facebook group, reading their new member page and then start searching in the group for information. You can also find all the files they keep with some pretty in depth information in the Files section under their Facebook group…it's easier to do this on a computer. Phones and tablets are a little hardier to use for some of the information. The links to the groups website and a link to join their closed Facebook group is in my post above.

Are you able to share a little more about your diagnosis and symptoms?

John

Thank you! 🙂

@johnbishop

Hi Linda @lindachakra, welcome to Mayo Clinic Connect. I thought I would answer your private message here in the Living with Neuropathy – Welcome to the group discussion so that you can meet other members who share your symptoms.

You can read my story and how I've been helped in the following post on Connect:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Update to my story above: The closed Facebook group I found that has helped me now has a website with links to order over the counter vitamins and supplements as well as a link to join their Facebook group. I would recommend joining the Facebook group, reading their new member page and then start searching in the group for information. You can also find all the files they keep with some pretty in depth information in the Files section under their Facebook group…it's easier to do this on a computer. Phones and tablets are a little hardier to use for some of the information. The links to the groups website and a link to join their closed Facebook group is in my post above.

Are you able to share a little more about your diagnosis and symptoms?

John

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Yes, I was diagnosed about five/six years ago in my feet and hands. I had problems for years before that as I was a meter reader for a major utility company in Michigan (walking up to ten miles a day often for 25.5 years). There is a history of diabetes in my family and I was pre diabetic. I wasnt placed on drugs yet, but through a low carb diet my A1C is down to 5.5. Before diagnosed my feet were really painful. then about ten years ago I noticed some tingling, etc. Long story short, they put me on Gab about 5 years ago, 300 mg. didnt do anything so they increased to 600….same results. Dr just called and says he has to see me, so appt Fri. Gab is now considered a controlled drug I guess. I want to get off it and this last week have went down to 300 a day until I speak with the Dr. At this time, my feet are uncomfortable but not too much pain, at times slight shooting pain but numbness is up to my knees in varying degrees. Hand; the thumb pulls into my palm and I have to pull it back in place. I live in a very small town and the Drs leave something to be desired…

@lindachakra

Yes, I was diagnosed about five/six years ago in my feet and hands. I had problems for years before that as I was a meter reader for a major utility company in Michigan (walking up to ten miles a day often for 25.5 years). There is a history of diabetes in my family and I was pre diabetic. I wasnt placed on drugs yet, but through a low carb diet my A1C is down to 5.5. Before diagnosed my feet were really painful. then about ten years ago I noticed some tingling, etc. Long story short, they put me on Gab about 5 years ago, 300 mg. didnt do anything so they increased to 600….same results. Dr just called and says he has to see me, so appt Fri. Gab is now considered a controlled drug I guess. I want to get off it and this last week have went down to 300 a day until I speak with the Dr. At this time, my feet are uncomfortable but not too much pain, at times slight shooting pain but numbness is up to my knees in varying degrees. Hand; the thumb pulls into my palm and I have to pull it back in place. I live in a very small town and the Drs leave something to be desired…

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@lindachakra before I met with a neurologist and was diagnosed with idiopathic small fiber peripheral neuropathy my primary care doc prescribed gabapentin for me also. I took it for about a week or so and told her it wasn't working. After a conference with her doctor team and explaining that I only have numbness with my feet and legs the lead doctor said the gabapentin is only for pain and they set up a referral to meet with the neurologist. That all started my journey trying to find something that helps. Besides the supplements I take which I think have slowed or stopped the progression (subjective on my part), I'm looking into myofascial release therapy. There are members who have had success with it and it does sound hopeful to me. I just have to set some time aside and find a therapist that is close enough. Unfortunately I'm going to have to wait until after I have my upcoming knee replacement done and am able to drive again. There is a great discussion here on Connect if you want more info.

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/

You mentioned your thumb pulls into the palm of your hand. Have you seen an orthopedic doctor? I found an article that sounds similar to what you are experiencing.

Tendon trouble in the hands: de Quervain's tenosynovitis and trigger finger
https://www.health.harvard.edu/newsletter_article/tendon-trouble-in-the-hands-de-quervains-tenosynovitis-and-trigger-finger

@johnbishop

@lindachakra before I met with a neurologist and was diagnosed with idiopathic small fiber peripheral neuropathy my primary care doc prescribed gabapentin for me also. I took it for about a week or so and told her it wasn't working. After a conference with her doctor team and explaining that I only have numbness with my feet and legs the lead doctor said the gabapentin is only for pain and they set up a referral to meet with the neurologist. That all started my journey trying to find something that helps. Besides the supplements I take which I think have slowed or stopped the progression (subjective on my part), I'm looking into myofascial release therapy. There are members who have had success with it and it does sound hopeful to me. I just have to set some time aside and find a therapist that is close enough. Unfortunately I'm going to have to wait until after I have my upcoming knee replacement done and am able to drive again. There is a great discussion here on Connect if you want more info.

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/

You mentioned your thumb pulls into the palm of your hand. Have you seen an orthopedic doctor? I found an article that sounds similar to what you are experiencing.

Tendon trouble in the hands: de Quervain's tenosynovitis and trigger finger
https://www.health.harvard.edu/newsletter_article/tendon-trouble-in-the-hands-de-quervains-tenosynovitis-and-trigger-finger

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Thank you–for all the advice! I haven't seen any Dr besides my regular Dr , and the guy that did the nerve test (he was kind of a ding bat–kept saying to me" well, you didnt want to live forever, did you? Maybe this is a blessing in disguise"…so I never went back. I live in a remote, very remote place in Michigan, hard to get good medical care unless I travel hundreds of miles and Im retired now , live by myself so I have to watch my $ a bit. Michigan is taxing my retirement (SS and pension) quite a bit. trying to try a few things first. Will read and study what you gave to me though. I found out years ago when I had thyroid disease that kept me sick for over a year, that before I go anywhere I research it myself. You almost have to.

Thank you

@ryan900

I’m 28 and have overly sensitive and at times burning like pain in my palms with bone type aches and stiffness in my wrists forearms and fingers and thumb. I am type one diabetic and have been for 12 years.

I mean it’s possible it’s a flare up of a undiagnosed arthritic condition or musclular in nature as I am having severe shoulder pains and upper back and neck pains also. Just always thought in diabetic neuropathy the legs and feet were the first affected not the hands. Just at a loss of what to do

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Hi, @ryan900 – welcome to Mayo Clinic Connect. Since you were wanting input on whether you're symptoms might constitute peripheral neuropathy, I moved your post here to this thread with many members called "Living with Neuropathy – Welcome to the group."

Here you will meet members like @johnbishop @anniemae @artscaping @parus @kevinking @gailfaith and others who may have some input on your overly sensitive and at times burning-like pain in your palms with bone-type aches and stiffness in your wrists, forearms, fingers and thumb, bearing in mind you are a type 1 diabetic.

How is your pain today, @ryan900?

Liked by Parus

Hi @ryan900, I would like to add my welcome to Connect along with @lisalucier and other members. I have no medical training or background but your symptoms almost sound like my symptoms when I had gout in my ankle quite a few years ago. I did find some possible causes for symptoms that sound like what you are describing. Have you discussed the symptoms with your doctor?

What’s Causing My Hand Pain?
https://www.healthline.com/health/hand-pain

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