1. < Neuropathy
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.

Hank | @jesfactsmon | Sep 11, 2020
In reply to @jesfactsmon "@david33 Laura, I want to extend a warm welcome to you. Everyone here knows plenty about..." + (show)
@jesfactsmon

@david33
Laura, I want to extend a warm welcome to you. Everyone here knows plenty about neuropathy generally and pain specifically. First I must say that you are way over my pay grade for giving out help, I care for my wife who suffers peripheral neuropathy (PN) pain in her feet. It sounds like your pain is primarily in your digestive areas? How did you find out it is PN related? Did you get a diagnosis. What were your multiple surgeries for exactly?

Maybe you could start at the beginning and tell your story from there, how it all started, your dealings with doctors, what medicines have you taken previously, who you have in your life for support. Lay it all out from the start up until now. Then people here will have a better picture of what you are dealing with and will be able to give their 2 cents worth to you. Some of the advice I seen given out here has been nothing short of incredible and right on.

I am very sorry for the agony you are in right now. I hope you receive help. Best to you, Hank

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@david33
Well Laura, I am just about to go out the door to get my car emissions checked by the state. This is when I notice you have already posted quite a bit about yourself before, which I would have read through at least somewhat before my previous reply if I'd thought to look. It still might not hurt for you to summarize your entire story, it often makes it easier to big-picture a person that way. In any case Laura, I'll check back later to see what you might post as well as look through your old posts. Hank

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lois6524 | @lois6524 | Sep 11, 2020
In reply to @david33 "Hello everyone, my name is Laura and I'm in need of help and understanding of Neuropathy...." + (show)
@david33

Hello everyone, my name is Laura and I'm in need of help and understanding of Neuropathy. I know it comes in different ways and it causes different problems in everyone. I went to my doctor today for pain in my stomach area, and the doctor put me on gabapentin 300 mg for right now and raise it after two weeks to see if that helps with pain. My main concern is eating and doing exercise.
I get pain after I eat any kind of food, so in order to not have pain I don't eat. Then there is exercise...if I try to gather things up from the yard, floor or reach to the bottom drawer like I'm trying to touch my toes mutable times I get pain with bulging of the muscles / abhisions from mutable surgeries is causing me lots of issues. It's getting to the point to where I want to sit in a corner and never come out. I even had a doctor tell me it's chronic pain to where my brain is making excuses to why I can't eat so I have to force myself to eat.

I hate taking medication because I don't want to get addicted to them like my family/friends are addicted.
Drugs and alcohol runs through my family.

Is there any help for me, or is this something I have to learn to deal with?

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Hi Laura -- I think your doctor should be looking for another explanation for your stomach pain--please go back to your doctor and ask for other options for your stomach pain -- good luck

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bustrbrwn22 | @bustrbrwn22 | Sep 11, 2020
In reply to @jesfactsmon "@bustrbrwn22 I know you are starting MFR and are looking in to kratom, and both sound..." + (show)
@jesfactsmon

@bustrbrwn22
I know you are starting MFR and are looking in to kratom, and both sound good for you. Another suggestion would be medical marijuana, if you have not tried that yet. Not sure if it is legal where you are yet.

And with the pain level you are at, you should not be being denied opioids if you want them. I am sorry they are hassling you about getting them (if I remember correctly). What about morphine? Is that considered the same or different from other opioids, I am not sure.I just know another member, Jim @jimhd gets it from his doctor, and it is one of the only things that helps him. Maybe you could ask him about his experience with using that.

You really need someone to care about your pain level besides yourself. Do you have support from family, friends? I hope you are not alone in this.

My best, Hank

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@jimhd could you please private message me. I’d like some of your wisdom on pain medication if you are willing? Thanks much.

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1 reply
orffehc44 | @orffehc44 | Sep 11, 2020
In reply to @bustrbrwn22 "@jimhd could you please private message me. I’d like some of your wisdom on pain medication..." + (show)
@bustrbrwn22

@jimhd could you please private message me. I’d like some of your wisdom on pain medication if you are willing? Thanks much.

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I’m still trying to figure it out myself, all I know is the Gabapentin was a life saver!! I started to get relief around 900 mg per day but am still adjusting the dosage.

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bustrbrwn22 | @bustrbrwn22 | Sep 11, 2020
In reply to @david33 "Hello everyone, my name is Laura and I'm in need of help and understanding of Neuropathy...." + (show)
@david33

Hello everyone, my name is Laura and I'm in need of help and understanding of Neuropathy. I know it comes in different ways and it causes different problems in everyone. I went to my doctor today for pain in my stomach area, and the doctor put me on gabapentin 300 mg for right now and raise it after two weeks to see if that helps with pain. My main concern is eating and doing exercise.
I get pain after I eat any kind of food, so in order to not have pain I don't eat. Then there is exercise...if I try to gather things up from the yard, floor or reach to the bottom drawer like I'm trying to touch my toes mutable times I get pain with bulging of the muscles / abhisions from mutable surgeries is causing me lots of issues. It's getting to the point to where I want to sit in a corner and never come out. I even had a doctor tell me it's chronic pain to where my brain is making excuses to why I can't eat so I have to force myself to eat.

I hate taking medication because I don't want to get addicted to them like my family/friends are addicted.
Drugs and alcohol runs through my family.

Is there any help for me, or is this something I have to learn to deal with?

Jump to this post

Hi Laura @david33
Welcome. I am leary of gabapentin as the cure for all pain. I have suffered nasty side effects so I would definitely get a second opinion or ask your doctor about other options. Your symptoms sound serious. Might a gastroenterologist be an option. Please keep us posted

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1 reply
bustrbrwn22 | @bustrbrwn22 | Sep 11, 2020
In reply to @jimhd "@sunnyflower @bustrbrwn22 @jesfactsmon Thank you all for your concern and encouragement. @sunnyflower. The reaction was just..." + (show)
@jimhd

@sunnyflower @bustrbrwn22 @jesfactsmon

Thank you all for your concern and encouragement.

@sunnyflower. The reaction was just related to Lyrica, and everything went back to normal after being off it for 2 days. That's the first time anything like that has happened to me. When I start a new medication I'm aware of the effects they have the first few weeks - usually cognitive deficit and maybe drowsiness - but as my body adjusts to it, those things fade away.

My way of dealing with suicidal thoughts: I think about how it would impact my wife and family; I tell myself I will stay safe until...whatever goal I have, usually an upcoming visit with our kids and grandchildren; I promise myself to put the thoughts on hold until tomorrow.

Hank, I've never owned a gun, which is probably a good thing, since that's the most common method for men. Pills are usually readily accessible for me, so that's been my mode. @bustrbrwn22. 200 sleeping pills! Someone found you? I'm sure that's why your doctors don't want to prescribe narcotics for you. They care about your safety. Have you ever been able to set goals for staying alive? When I started doing that, I could only project to one day, and after some months of that I could do a week, and so on. Being able to set a goal 6 months out was a big accomplishment.

I know that when neuropathy pain got bad it affected my depression and suicidality. There's an ongoing link between pain and mental ill-health for me. I talk with my therapist about that often.

Gotta quit for tonight. Thanks again, everyone.

Jim

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@jimhd I should note the suicide attempt was in 1990 before medical records and isn’t even in my records I should think. Yes I have suicidal tendencies but hopefully we can message privately about it more. I would never do pills again.

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bustrbrwn22 | @bustrbrwn22 | Sep 11, 2020
In reply to @bustrbrwn22 "I am taking my first magnesium pill tonight. Don’t want to get my hopes up. It’s..." + (show)
@bustrbrwn22

I am taking my first magnesium pill tonight. Don’t want to get my hopes up. It’s 250 mg I think

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@avmcbellar @jesfactsmon Success!!! A full nights sleep with the magnesium. We’ll see what tonight brings. I have myofascial therapy at 4 pm CST today so I am curious to see how I feel after. My pain level is only at a 6 right now.

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2 replies
bustrbrwn22 | @bustrbrwn22 | Sep 11, 2020
In reply to @david33 "Hi Hank, I know exactly how this feels. I have pain that keeps me awake, and..." + (show)
@david33

Hi Hank,
I know exactly how this feels. I have pain that keeps me awake, and when I won't go to bed until my body gets exhausted that's when I will climb into bed and pass out, when it's time to get up (it feels like I'm being pulled from a deep sleep) I don't feel or move, and I fall back to sleep again (when I think of the time of the day it might be, I pull or have someone to pull me into a sitting position), I pray that I don't wake up, but once I'm awake I thank God that I can be with my family no matter how much pain I'm in. I'm thankful for my family for helping me when I feel low about myself.

Jump to this post

We are here for you Laura. One day at a time.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 11, 2020
In reply to @orffehc44 "Thank you Colleen. I was diagnosed in July with small fiber neuropathy and don’t know anything..." + (show)
@orffehc44

Thank you Colleen. I was diagnosed in July with small fiber neuropathy and don’t know anything aboutitexceptit burns like hell. I became ill in February and was first diagnosed with gastroparesis, then after about a month the burning started and they thought it was related to the new meds I was on for it. I wound up in the ER 3 times in one week because I could not stand the burning. I could not sleep and it literally was driving me insane. After seeing a few doctors I finally was sent to a neurologist where he did some nerve tests and a few skin biopsies from my leg. That was what nailed the diagnosis and I was put on gabapentin. I’m still trying to figure out the right dosage and just increased to 1500 mg a day. The side effects only seem to last a few weeks. The most annoying one is if I am talking for a long time all of a sudden my mouth stops working for a minute and I have to take a minute and then start talking again. I am hoping to learn more about my condition and how to relieve it. One question I have is does humidity make the burning worse?

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Hello @orffehc44, I would like to add my welcome to Connect along with @colleenyoung and other members. Your question about does humidity make the burning worse for neuropathy is a good one. I know temperature and humidity changes affect me but I don't have the burning or pain with my neuropathy.

Here's some information I found that talks about it - Excerpt from link below: "The pain caused by humidity and summer heat may cause increased discomfort in those suffering from peripheral neuropathy symptoms. By ensuring the patient has a comfortable indoor environment, the change in temperature will not exacerbate chronic pain.Sep 11, 2019" - Responding to Weather Changes When Caring for Neuropathy Patients: https://fapnewstoday.com/2019/09/11/weather-changes-neuropathy-preparations-appropriate-clothing/

If you want to learn more about the different types of neuropathy, Dr. Matthew B. Jensen has some easy to understand videos on his YouTube channel here: https://www.youtube.com/channel/UCJaXGRxxjnF2mvLiOFmmHLQ/videos

If you are able and would like to share your neuropathy journey, we have a discussion for members with neuropathy to share their story - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/ - The discussion description has a suggested information to cover for your story but it's not a requirement. You only need to share what you are comfortable sharing.

John

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Sep 11, 2020
In reply to @david33 "Hello everyone, my name is Laura and I'm in need of help and understanding of Neuropathy...." + (show)
@david33

Hello everyone, my name is Laura and I'm in need of help and understanding of Neuropathy. I know it comes in different ways and it causes different problems in everyone. I went to my doctor today for pain in my stomach area, and the doctor put me on gabapentin 300 mg for right now and raise it after two weeks to see if that helps with pain. My main concern is eating and doing exercise.
I get pain after I eat any kind of food, so in order to not have pain I don't eat. Then there is exercise...if I try to gather things up from the yard, floor or reach to the bottom drawer like I'm trying to touch my toes mutable times I get pain with bulging of the muscles / abhisions from mutable surgeries is causing me lots of issues. It's getting to the point to where I want to sit in a corner and never come out. I even had a doctor tell me it's chronic pain to where my brain is making excuses to why I can't eat so I have to force myself to eat.

I hate taking medication because I don't want to get addicted to them like my family/friends are addicted.
Drugs and alcohol runs through my family.

Is there any help for me, or is this something I have to learn to deal with?

Jump to this post

Hi Laura @david33, You ask questions that I'm sure we have all had on our journey with neuropathy. It can be difficult, painful and something we need to learn more about so that we can figure out a way to live as well as we can with the condition. Here's something I found that talks to your concern about eating and the pain.

"Neuropathy worse after eating -- Your nerves need the right balance of nutrients to function properly, and they are also vulnerable to toxins. So what you eat and drink, as well as how your body absorbs the nutrients from what you consume, can contribute to or exacerbate neuropathy, or peripheral nerve damage.May 24, 2018" excerpt from -- How Diet Can Play a Role in Neuropathy Prevention and Management: https://www.everydayhealth.com/neuropathy/diet-understanding-connection/

Here are some other discussions on Connect about neuropathy & exercise.
-- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
-- Peripheral Neuropathy - Stretching and Exercise: https://connect.mayoclinic.org/discussion/peripheral-neuropathy-stretching-and-exercise/

You might also want to check out the Member Neuropathy Journey Stories: What's Yours? discussion to learn what others have found helpful and if you feel comfortable use the guidelines in the discussion description to share your own neuropathy story -- https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

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