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Profile picture for Colleen Young, Connect Director
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.

Profile picture for carmennieves
carmennieves | @carmennieves | Oct 8 11:42am
In reply to @kellygreen "New to group. I have peripheral neuropathy in both feet and posterior left leg due to..." + (show)
Profile picture for kellygreen @kellygreen

New to group. I have peripheral neuropathy in both feet and posterior left leg due to L5 S1 disc rupture in 2010. Wear and tear due to heavy athletic background. Had a partial discectomy but the damage was already done to my sciatic nerve on left side. Actually heard/felt it rupture followed by “scalding water” going down the back of my leg. When they were in there they discovered a cyst on the right side nerve root at the same level. They decided to leave it since I had no right-side symptoms at the time (2010). Now the right foot is almost worse than the left, but no leg involvement on that side, just foot.
Also had an ACDF at C3 C4 prior to that, but no permanent damage.
Shoes and socks are my enemy, which is obviously a problem, lol.
Any advice? The ice-pick heel jabs, which result in labor-breathing to get through it, along with numbness, inability to feel heat/cold/water on bottom of feet, are impacting my ability to do shit. It just continues to get worse. At 56, I am quite concerned about mobility down the road. I’ve always been active. I have also had the same bruise on bottom of my left foot for at least a year, right in the middle. WTH?
Neurologist? Podiatrist? I refuse to go on gabapentin.

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@kellygreen just keep praying

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Profile picture for andyjustin
andyjustin | @andyjustin | Oct 8 3:04pm

Hi everybody question anybody experienced what I consider my tendons getting really tight all over my body I have autonomic neuropathy. Would love to hear from someone who is experiencing something similar or has some knowledge in regards to this literally it’s not my joints. It feels like my tens anyway I’m posting this hopefully I’ll get a reply or some comments

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1 reply
Profile picture for crazycatlady4110
crazycatlady4110 | @crazycatlady4110 | Oct 9 6:06am

Hello and thank you! I have idiopathic neuropathy in my hands and feet. Nobody seems to know why. I've tried numerous creams and supplements, unfortunately, nothing helped. 1800-2400 mg of gabapentin (more on really bad days) is the only thing that takes the edge off. Unfortunately, it makes me feel like a zombie. I'm hoping to find some tips here for living/coping with this. Thanks for having me and listening. 😊

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2 replies
Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Oct 9 7:11am
In reply to @andyjustin "Hi everybody question anybody experienced what I consider my tendons getting really tight all over my..." + (show)
Profile picture for andyjustin @andyjustin

Hi everybody question anybody experienced what I consider my tendons getting really tight all over my body I have autonomic neuropathy. Would love to hear from someone who is experiencing something similar or has some knowledge in regards to this literally it’s not my joints. It feels like my tens anyway I’m posting this hopefully I’ll get a reply or some comments

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Hi Andy @andyjustin, I have the tightness feeling in my legs but I think it's more due to my wearing of compression socks and not my small fiber peripheral neuropathy. What you describe sounds similar to Stiff Person Syndrome -https://newsnetwork.mayoclinic.org/discussion/what-is-stiff-person-syndrome/. You might want to scan through the other discussions on the condition to see if some of it lines up with what you are feeling - https://connect.mayoclinic.org/search/discussions/?search=stiff%20person%20syndrome%20%20.

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Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Oct 9 7:14am
In reply to @crazycatlady4110 "Hello and thank you! I have idiopathic neuropathy in my hands and feet. Nobody seems to..." + (show)
Profile picture for crazycatlady4110 @crazycatlady4110

Hello and thank you! I have idiopathic neuropathy in my hands and feet. Nobody seems to know why. I've tried numerous creams and supplements, unfortunately, nothing helped. 1800-2400 mg of gabapentin (more on really bad days) is the only thing that takes the edge off. Unfortunately, it makes me feel like a zombie. I'm hoping to find some tips here for living/coping with this. Thanks for having me and listening. 😊

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@crazycatlady4110 You are not alone trying to find something that helps. Quite a few members have started different discussions on what helps them if you want to scan through to learn more - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20what%20helps

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delma64 | @delma64 | 6 days ago

Hello! New to the group. I need desperately to connect primarily with those like myself experiencing primary burning mouth syndrome. Is this rare?

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wenner | @wenner | 6 days ago
In reply to @crazycatlady4110 "Hello and thank you! I have idiopathic neuropathy in my hands and feet. Nobody seems to..." + (show)
Profile picture for crazycatlady4110 @crazycatlady4110

Hello and thank you! I have idiopathic neuropathy in my hands and feet. Nobody seems to know why. I've tried numerous creams and supplements, unfortunately, nothing helped. 1800-2400 mg of gabapentin (more on really bad days) is the only thing that takes the edge off. Unfortunately, it makes me feel like a zombie. I'm hoping to find some tips here for living/coping with this. Thanks for having me and listening. 😊

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@crazycatlady4110 I have a very caring GP and we have been up hill and down dale with drugs. I have had leg trouble for many years, Axonal Peripheral Neuropathy since 2019. Cause unknown. Tried all the 'No drugs' nothing really helped. My latest brew is working very well, only problem is I've had Lyrica before for RLS and it augmented after 4 years. I have Lyrica am & pm and Palexia am & md and I am very comfortable at the moment. @wenner

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Profile picture for Okay Now What
Okay Now What | @okaynowwhat | 6 days ago

Excessive body sweat leading to sunstroke symptoms

Hello Colleen & the group,

I was diagnosed with parallel peripheral idiopathic neuropathy at Cleveland Clinic Weston about 18 years ago. Most likely from a back injury / car accident 10 years before that. My progression is still quite painful & has reached my knees in both legs.

I am on high dosages of Lyrica & Cymbalta. I had been on a dosage of Neurontin 2400mg/day, but the side effects were horrendous. I started using legal pot & cut that down to 600.

I have not seen anyone posting about the excessive body sweat symptom after only a few minutes in 90 degree sunlight. 10 minutes & I am so quickly drenched in sweat that I become ill with sunstroke like symptoms. This has just started about a year ago. I also may have this side effect for body sweat from Cymbalta.

My neurologist is basically nonfunctional. Does anyone know how to tell which is causing my sunstroke like symptoms, my neuropathy or the Cymbalta? Should I just stop taking Cymbalta to see?

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3 replies
Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | 6 days ago
In reply to @okaynowwhat "Excessive body sweat leading to sunstroke symptoms Hello Colleen & the group, I was diagnosed with..." + (show)
Profile picture for Okay Now What @okaynowwhat

Excessive body sweat leading to sunstroke symptoms

Hello Colleen & the group,

I was diagnosed with parallel peripheral idiopathic neuropathy at Cleveland Clinic Weston about 18 years ago. Most likely from a back injury / car accident 10 years before that. My progression is still quite painful & has reached my knees in both legs.

I am on high dosages of Lyrica & Cymbalta. I had been on a dosage of Neurontin 2400mg/day, but the side effects were horrendous. I started using legal pot & cut that down to 600.

I have not seen anyone posting about the excessive body sweat symptom after only a few minutes in 90 degree sunlight. 10 minutes & I am so quickly drenched in sweat that I become ill with sunstroke like symptoms. This has just started about a year ago. I also may have this side effect for body sweat from Cymbalta.

My neurologist is basically nonfunctional. Does anyone know how to tell which is causing my sunstroke like symptoms, my neuropathy or the Cymbalta? Should I just stop taking Cymbalta to see?

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Welcome @okaynowwhat, You are not alone with the sweating. I can't answer your question although I do sweat a lot if it's hot outside and I have neuropathy but only the numbness so taking no pain medications. @njed started a discussion on the topic here - Unusual excessive sweating: https://connect.mayoclinic.org/discussion/unusual-excessive-sweating/.

I had to laugh when I saw your profile question and then read your profile. And yes, the song popped into my mind as soon as I saw your profile photo - https://www.youtube.com/watch?v=s5a45f1uy80.

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Profile picture for NJ Ed
NJ Ed | @njed | 6 days ago
In reply to @okaynowwhat "Excessive body sweat leading to sunstroke symptoms Hello Colleen & the group, I was diagnosed with..." + (show)
Profile picture for Okay Now What @okaynowwhat

Excessive body sweat leading to sunstroke symptoms

Hello Colleen & the group,

I was diagnosed with parallel peripheral idiopathic neuropathy at Cleveland Clinic Weston about 18 years ago. Most likely from a back injury / car accident 10 years before that. My progression is still quite painful & has reached my knees in both legs.

I am on high dosages of Lyrica & Cymbalta. I had been on a dosage of Neurontin 2400mg/day, but the side effects were horrendous. I started using legal pot & cut that down to 600.

I have not seen anyone posting about the excessive body sweat symptom after only a few minutes in 90 degree sunlight. 10 minutes & I am so quickly drenched in sweat that I become ill with sunstroke like symptoms. This has just started about a year ago. I also may have this side effect for body sweat from Cymbalta.

My neurologist is basically nonfunctional. Does anyone know how to tell which is causing my sunstroke like symptoms, my neuropathy or the Cymbalta? Should I just stop taking Cymbalta to see?

Jump to this post

@okaynowwhat @njed here....yes, I do have excessive sweating mostly in months of early May to mid-October. I'd say the worse is back of neck, chest area, back and forehead. I posted several years ago about this and each year, it seems to be getting worse. I always look forward to cooler weather, and it is all tied to PN. Another crazy complex symptom. Ed

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