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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @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?

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

atames1939 | @atames1939 | Dec 12, 2022
In reply to @johnbishop "Thank you Colleen and Mayo Connect! @jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10..." + (show)
@johnbishop

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

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Thank you - I'm looking forward to receiving the information.

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atames1939 | @atames1939 | Dec 12, 2022

Thank you! I'm looking forward to receving the information.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 12, 2022
In reply to @atames1939 "Thank you! I'm looking forward to receving the information." + (show)
@atames1939

Thank you! I'm looking forward to receving the information.

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Hello @atames1939, Welcome to Connect. Do you have neuropathy also? What are your symptoms?

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eep | @eep | Dec 12, 2022

It is challenging to deal with the pain. I've had my neuropathy for several years. It just keeps getting worse. I get these electrical shocks, feels like I put my finger in a socket sometimes just out of the blue I get a shock and it's so bad, I yell or scream. It hurts, I scare people. It would be nice to have some sort of comfort. Why do people have to spoil other people's lives? Just because others misuse drugs, the people who really need them, can't have them. Good Luck Keep trying to find something for all of us

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smicky | @smicky | Dec 12, 2022
In reply to @johnbishop "Welcome @ellbee, I've carried that pre-diabetic tag with me for 20+ years also and have recently..." + (show)
@johnbishop

Welcome @ellbee, I've carried that pre-diabetic tag with me for 20+ years also and have recently thought it may have something to do with my idiopathic small fiber peripheral neuropathy. So, I'm working on getting out of the pre-diabetes diagnosis after doing a little reading on the metabolic syndrome which fits most people in the pre-diabetes category.

-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/

Do you have pain with your neuropathy symptoms?

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No pain, but never diagnosed as it is too expensive. Feet feel like something is over them, a bit
like numbness? Does this fit neuropathy? I just finished my annual physical and blood work is
great. No revelations any where; however, we did not discuss neuropathy. I am not a pre-diabetic or anything and am a 79 yr. old female.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 12, 2022
In reply to @smicky "No pain, but never diagnosed as it is too expensive. Feet feel like something is over..." + (show)
@smicky

No pain, but never diagnosed as it is too expensive. Feet feel like something is over them, a bit
like numbness? Does this fit neuropathy? I just finished my annual physical and blood work is
great. No revelations any where; however, we did not discuss neuropathy. I am not a pre-diabetic or anything and am a 79 yr. old female.

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Numbness can be a lot different things, hard to know without some diagnosis.

"Long-term numbness or a tingling feeling in the legs and feet may be due to conditions such as multiple sclerosis (MS), diabetes, peripheral artery disease, or fibromyalgia. The sensation may be felt in the whole leg, below the knee, or in different areas of the foot."
-- Numbness in legs and feet: Causes, symptoms, and treatment:
https://www.medicalnewstoday.com/articles/321560

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1 reply
julie11 | @julie11 | Dec 13, 2022

Hello! I've been diagnosed with Small Fiber (Poly-) Neuropathy. I have pain due to sensory symptoms (mostly aches and shock-like pains) as well as autonomic effects (gut pain, esp. at night, from Slow Transit Constipation, STC). I'm in a local pain support group, which is helpful. I also take Cymbalta for the sensory nerve pain and use medical cannibis to help me get to sleep. The hardest part is finding good medical care. It took me three years, numerous specialists, and a provisional self-diagnosis using info from the web to get to the SFN testing. I tried to schedule a follow-up appointment with my gastroenterologist in May 2022, and was told that her first opening is in Sept. 2023. Nobody (except the sympathetic PCP it took me years to find) wants to prescribe opioids, even when badly needed. And while there is a research literature on a connection between SFN and STC, the specialists I see don't both to look at it. And I have good insurance and live a a big city known for its excellent medical care! I'm guessing its even worse elsewhere.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 13, 2022
In reply to @julie11 "Hello! I've been diagnosed with Small Fiber (Poly-) Neuropathy. I have pain due to sensory symptoms..." + (show)
@julie11

Hello! I've been diagnosed with Small Fiber (Poly-) Neuropathy. I have pain due to sensory symptoms (mostly aches and shock-like pains) as well as autonomic effects (gut pain, esp. at night, from Slow Transit Constipation, STC). I'm in a local pain support group, which is helpful. I also take Cymbalta for the sensory nerve pain and use medical cannibis to help me get to sleep. The hardest part is finding good medical care. It took me three years, numerous specialists, and a provisional self-diagnosis using info from the web to get to the SFN testing. I tried to schedule a follow-up appointment with my gastroenterologist in May 2022, and was told that her first opening is in Sept. 2023. Nobody (except the sympathetic PCP it took me years to find) wants to prescribe opioids, even when badly needed. And while there is a research literature on a connection between SFN and STC, the specialists I see don't both to look at it. And I have good insurance and live a a big city known for its excellent medical care! I'm guessing its even worse elsewhere.

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Welcome Julie @julie11, Sorry you haven't been able to find much help from the specialists you see. It can be troubling when you find research information showing a connection but the doctor doesn't seem interested to try and help. There is another discussion on STC that I'm not sure you've seen but it might provide some suggestions:

-- Slow transit constipation and surgery: https://connect.mayoclinic.org/discussion/slow-transit-constipation-and-surgery/

I'm guessing you have done a lot of research to find things that might help. Have you seen the list of complementary and alternative treatments some neuropathy patients have found helpful on the Foundation for Peripheral Neuropathy site here? - https://www.foundationforpn.org/treatments/

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missingnj | @missingnj | Dec 13, 2022

Greeting,
I am new to this Neuropathy Discussion group (Dec 2022) and would like to introduce myself. I am in my late 50's and have been disabled for 14 years. My neuropathic pain, tingling, weakness, and numbness has been up to this point from the waist down due to nerve root damage in my lumbar and sacral spinal nerve roots. These nerve roots are damaged due to spinal osteoarthritis. In 2018 I had a spinal cord stimulator installed and it has been successful in decreasing neuropathic symptoms. I’m also prescribed Cymbalta, Gabapentin, and Voltaren. I have had two Caudal Epidural Steroid injections over the past 4 years.

Unfortunately, I am now experiencing neuropathic pain in my upper extremities. I feel defeated and depressed.
It is my hope that I can learn from moderators, mentors, and group members than I am not alone in suffering and can learn skills to help me to better adapt to this hidden disability.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 13, 2022
In reply to @missingnj "Greeting, I am new to this Neuropathy Discussion group (Dec 2022) and would like to introduce..." + (show)
@missingnj

Greeting,
I am new to this Neuropathy Discussion group (Dec 2022) and would like to introduce myself. I am in my late 50's and have been disabled for 14 years. My neuropathic pain, tingling, weakness, and numbness has been up to this point from the waist down due to nerve root damage in my lumbar and sacral spinal nerve roots. These nerve roots are damaged due to spinal osteoarthritis. In 2018 I had a spinal cord stimulator installed and it has been successful in decreasing neuropathic symptoms. I’m also prescribed Cymbalta, Gabapentin, and Voltaren. I have had two Caudal Epidural Steroid injections over the past 4 years.

Unfortunately, I am now experiencing neuropathic pain in my upper extremities. I feel defeated and depressed.
It is my hope that I can learn from moderators, mentors, and group members than I am not alone in suffering and can learn skills to help me to better adapt to this hidden disability.

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Hello @missingnj, Welcome to Connect. You are definitely not alone! You will notice that we moved your post to the following existing discussion below on the same topic so that you can meet others who share your symptoms.

-- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/

One thing that helped me was to learn as much as I can about my condition and what treatments are available that might help. Here are my two favorite sites that you might also find useful:
-- Neuropathy Commons:
https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy - Treatments: https://www.foundationforpn.org/treatments/

The Foundation for Peripheral Neuropathy site above has a list of complementary and alternative treatments that some people have found helpful. Have you done any research on treatments or tried any alternative treatments or therapy?

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