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?

@cwallen9

It is good to hear the spine stimulator worked for you. What was the new medicine that is helping you now?

Jump to this post

Would like to know also

REPLY

@jimhd I read your post John. I feel it is a good idea to see a psychiatrist and a counselor. Having a very painful and progressive disease is very difficult to live with. I also get in the depths of despair. The constant pain and knowing this pain will keep me from doing the things I once enjoyed leaves me in serious depression. I am also 74 years old and have difficulty stepping down some and then the neuropathy and lymphedema come into play and yes, at times I question my purpose for living. My husband died 2 years ago so I must take over his responsibilities plus my own. The pain of the neuropathy keeps me from functioning on the level I am used to. I am on an antidepressant and although it does not do what I want I know it has benefits. I know that because I am sitting here talking to the group and I am able to recognize some of my issues. I was a counselor for 25 years and worked with people experiencing addiction along with other issues and I know the benefits of allowing someone to come into your life with maybe a new prospective. I admit I don't like having the table turned from counselor to patient but I also know that our hats can change at any given time. So, if a doctor or someone you respect recommends you see a psychiatrist please look into it. Having a chronic illness that produces so much pain and discomfort is not easy. We seek medication for the body so why not seek medication for our mind and hearts.

REPLY
@jimhd

@wilcy An evaluation by a psychiatrist was required for me as well. The psychiatrist wasn't quite sure what the point was, either. The good news is that the appointment with the psychiatrist came at a critical time for me. I was taking a nosedive into the dark hole of depression and suicidal ideation, and really needed to talk with a therapist. He got me on the priority list of patients to see the new therapist, and I know I owe my life to him.

Jim

Jump to this post

@wilcy @jimhd The reason the insurance companies make you see a psychiatrist before any kind of stimulator trial is that research shows that people who have clinical depression tend not to report positive effects using them. So if evaluated by the psychiatrist to have clinical depression, a person then would not be a candidate for a stimulator trial. That is what my pain specialist told me, as I may be doing a trial for the Dorsal Root Ganglion Stimulator. Lori Renee

Liked by steeldove, rwinney

REPLY

How could anyone not be depressed with failed spinal stenosis surgery?Tks

REPLY

Hi I am Nina from Kaeeu Hawaii I was recently diagnosed with Neuropathy not caused by diabetes. I really hope I can find some understanding of this illness by following this group.

REPLY
@ninac

Hi I am Nina from Kaeeu Hawaii I was recently diagnosed with Neuropathy not caused by diabetes. I really hope I can find some understanding of this illness by following this group.

Jump to this post

Hello Nina and welcome. You most definitely will benefit from this group. I have Small Fiber PN and joined the group last May. Since, I've received support, encouragement and have continuously been educated about my disease from others experiences. Take care.
Rachel

REPLY

Good afternoon @ninac. Welcome to Connect Nina. It is wonderful to greet someone from Hawaii. I lived in Lanikai for several years. Where is Kaeeu? I am unable to find it. Big Island?

Neuropathy is a tough situation to deal with and there are many forms. As patients, our goal is to manage the disease and its symptoms. What were you told about the cause of your Neuropathy if it was not the result of diabetes?

What symptoms bother you the most? There are many forms of neuropathy. As a mentor on Connect, I want to make sure you are introduced to fellow members who can share their experiences that relate to yours. I would like to know a little more about your situation at this time. Will you share some specific medications or treatments that you have tried? Were they effective?

Be safe and protected today. Chris

REPLY

Aloha! Messy is near Hilo on the Big Island. I was sent to a Specialist and was diagnosed. Text for Diabetes showed no problems. Doctor thought it could be medications? Beginning to think maybe I should stop any supplements with B complex. I am 72 and just started taking them about 2 months or so before sudden onset of problems. I also take blood pressure and water pills.

REPLY

Hi @ninac, I was diagnosed almost 2 yrs. ago with ideopathic SFN, I am not diabetic, and my neurologist suggested I take B12 1000 mg. which I took for 3 mo. and then I changed over to a low dose B Complex. I have read that the B vitamins are water soluble so I’m confused about the possible toxicity. My neuro PA told me to stop the B6 (which I tested very slightly high) is only 2mg, and to increase the B12 (which she said I tested slightly low.) My internist claims there is no toxicity associated with either so I continue to take my Bcomplex. What is the dosage of the B’s you were taking? Have you had your levels tested? Helen

REPLY
@cwallen9

It is good to hear the spine stimulator worked for you. What was the new medicine that is helping you now?

Jump to this post

@cwallen9

Imipramine. It's in the amitriptyline family

REPLY

I have read and been told by doctors that a high B6 level can cause neuropathy. I would look into that.

REPLY
@jimhd

@cwallen9

Imipramine. It's in the amitriptyline family

Jump to this post

Hi Jim

My PCP wants me to try Nortriptyline for added pain relief. I am already weaning off Duloxetine so once that's done, I will start Nortriptyline. We are scraping the bottom of the barrel. I'm going to run this idea past my neurologist as well during my 2/6 visit. Have you Jim, or anyone else, used Nortriptyline and found success? Seems like I'm quite past this drug but, I'm no Dr.

In other news…my blood testing reveals continued high copper levels, which have been high for a year now. Neuro is sending me to a gastroenterologist to rule out any liver problems. Also, I'm below threshold on Aldolase and Alkaline phos. MCV is a little over threshold.

At this point low B12 is supposedly the blame of my SFPN, which has been pretty devastating to my life, therefore, I underestimate nothing.

REPLY
@rwinney

Hi Jim

My PCP wants me to try Nortriptyline for added pain relief. I am already weaning off Duloxetine so once that's done, I will start Nortriptyline. We are scraping the bottom of the barrel. I'm going to run this idea past my neurologist as well during my 2/6 visit. Have you Jim, or anyone else, used Nortriptyline and found success? Seems like I'm quite past this drug but, I'm no Dr.

In other news…my blood testing reveals continued high copper levels, which have been high for a year now. Neuro is sending me to a gastroenterologist to rule out any liver problems. Also, I'm below threshold on Aldolase and Alkaline phos. MCV is a little over threshold.

At this point low B12 is supposedly the blame of my SFPN, which has been pretty devastating to my life, therefore, I underestimate nothing.

Jump to this post

Hi
I tried Nortriptyline & it did help my pain but I got so constipated from it that I had to stop it. That was the only med that helped me with my pain. I take Gabapentin at a low dose of 500 mg of day. I take 300 mg at night & 100 mg 2 times during the day. That is so that it don't make me so tired. I also take the duloxetine. How come you are trying to get off of it?

REPLY
@lorirenee1

@wilcy @jimhd The reason the insurance companies make you see a psychiatrist before any kind of stimulator trial is that research shows that people who have clinical depression tend not to report positive effects using them. So if evaluated by the psychiatrist to have clinical depression, a person then would not be a candidate for a stimulator trial. That is what my pain specialist told me, as I may be doing a trial for the Dorsal Root Ganglion Stimulator. Lori Renee

Jump to this post

@lorirenee1 Interesting. The psychiatrist approved me for the stimulator, knowing that I've been clinically depressed since 2002.

REPLY
@rwinney

Hi Jim

My PCP wants me to try Nortriptyline for added pain relief. I am already weaning off Duloxetine so once that's done, I will start Nortriptyline. We are scraping the bottom of the barrel. I'm going to run this idea past my neurologist as well during my 2/6 visit. Have you Jim, or anyone else, used Nortriptyline and found success? Seems like I'm quite past this drug but, I'm no Dr.

In other news…my blood testing reveals continued high copper levels, which have been high for a year now. Neuro is sending me to a gastroenterologist to rule out any liver problems. Also, I'm below threshold on Aldolase and Alkaline phos. MCV is a little over threshold.

At this point low B12 is supposedly the blame of my SFPN, which has been pretty devastating to my life, therefore, I underestimate nothing.

Jump to this post

@rwinney I have tried Nortriptyline but it didn't help the pain. Back in the past I took Amitriptyline for TMJ, and it kicked in quickly. I had been having severe pain in my cheeks and sinuses for a year, most likely due to the stress of working with an abusive boss.

Jim

REPLY
Please login or register to post a reply.