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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.

doneuro | @doneuro | May 18, 2019

Hello All, Has anyone with small fiber neuropathy had hernia repair surgery? Any complications re neuropathy? Thanks much

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chattty | @chattty | May 22, 2019
In reply to @chattty "Hi I’m Cathy and 57 Years of age. I’ve been told I have peripheral neuropathy of..." + (show)
@chattty

Hi I’m Cathy and 57 Years of age. I’ve been told I have peripheral neuropathy of which I sincerely believe is wrong. I had diabetes for a few years never out of control, always borderline. I instead believe I got it from the drug levaquin I received in the hospital for pneumonia. It started as soon as I got out of the hospital. Needless to say I have it.i can’t get rid of it and I need to learn to live with it. Which is why I’m here. I think I’m going bonkers I’m in so much pain. Started in my toes then whole feet and almost to my knees. Started in my fingers up my both sides now. I believe it will kill me. That’s all.

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So no replies yet? I’m sort of sad as I could really use a friend with this.

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chattty | @chattty | May 22, 2019
In reply to @jeanray "I am Jeanray.......Live in Florida. Diagnosed this week with peripheral neuropathy. It manifests mostly in my..." + (show)
@jeanray

I am Jeanray.......Live in Florida. Diagnosed this week with peripheral neuropathy. It manifests mostly in my right leg, but also goes into the left leg and feet. I have had numbness in my goes and feet for some time. No indication of being diabetic. I do have some low back pain, I had a fall last summer and had a "bone bruise" on my right knee?? One thing that comes to mind is that I've had restless leg syndrome from time to time at night since I was in my 20's....I am 78. Doctor suggested Lyrica might lesson the symptons, has anyone had experience with that......

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Hi Jeanray. I’m sorry about your health issues from one to another sufferer.I'm on gabapentin only because it is cheaper. I would like to be on lyrica because ,
Most docs I have seen recommend it first. So,I guess I’m in second best. lol. I’ve heard it’s great for restless leg. 🤗

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2 replies
chattty | @chattty | May 22, 2019
In reply to @summertime4 "Carol again adding to above. I have significant swelling of my left foot and toes. I..." + (show)
@summertime4

Carol again adding to above. I have significant swelling of my left foot and toes. I was told that sometimes Gapapentin can cause swelling. Has anyone experienced this from Gapapentin?

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Yes, was t sure of why but doc said not because of neuropathy now I guess I do I’m on 3600 mg a day. Guess it’s that.swelling gotten worse though in both feet and hands.

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chattty | @chattty | May 22, 2019
In reply to @summertime4 "Thank you all for the feedback. I am sitting here right now is bad pain. My..." + (show)
@summertime4

Thank you all for the feedback. I am sitting here right now is bad pain. My foot and leg below the knee are so swollen they look and feel like they are going to pop. I did take a percocet about 2 hours ago which help decrease the pain. It is back now. My toes are so swollen I cannot move them. I had to cancel lymphedema therapy today because I was having electrical work done in the house. I don't see the neurologist until May 22 so I have no clue what type of neuropathy except for peripheral. The cardiologist said the reason all the pain and swelling is on my left side is because the damaged nerve is probably on that side. My quality of life is so diminished and with my depression and pain it is worse. I am alone here. I lost my husband 14 months ago from cancer. I feel the doctors waited too long to address my pain and physical problems always using grief to account for everything. Well I don't think it has caused neuropathy. In tears right now.

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Summertime I just lifted you up in prayer. I do hope you get everything under control soon. I’m sorry for all your pain.

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summertime4 | @summertime4 | May 22, 2019

chatty Thank you. I have my first visit with the neurologist today. I believe the neurologist is the doctor who treats neuropathy. I don't know who does what anymore. There is good news. I had a Echo done on my heart this week. They were looking at the possibility of a heart problem which may be causing the fluid retention in my leg and foot. This awesome doctor called me back the same day to tell me my heart is strong and not the reason for fluid retention. Maybe the vitamin D in the sunshine with help with my depression. I will keep you posted. Sending prayers back.

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3 replies
grandmaR | @grandmar | May 22, 2019
In reply to @chattty "Hi Jeanray. I’m sorry about your health issues from one to another sufferer.I'm on gabapentin only..." + (show)
@chattty

Hi Jeanray. I’m sorry about your health issues from one to another sufferer.I'm on gabapentin only because it is cheaper. I would like to be on lyrica because ,
Most docs I have seen recommend it first. So,I guess I’m in second best. lol. I’ve heard it’s great for restless leg. 🤗

Jump to this post

@chatty
I've been on Gabapentin for years.
I really don't know if it works for me???????
My brother, who has chronic pain, too, swears by it!
You may not be on the second best med, it may be the first best for you.
We are all different and react to meds differently.
Have a pain free day!
Ronnie (GRANDMAr)

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grandmaR | @grandmar | May 22, 2019
In reply to @summertime4 "chatty Thank you. I have my first visit with the neurologist today. I believe the neurologist..." + (show)
@summertime4

chatty Thank you. I have my first visit with the neurologist today. I believe the neurologist is the doctor who treats neuropathy. I don't know who does what anymore. There is good news. I had a Echo done on my heart this week. They were looking at the possibility of a heart problem which may be causing the fluid retention in my leg and foot. This awesome doctor called me back the same day to tell me my heart is strong and not the reason for fluid retention. Maybe the vitamin D in the sunshine with help with my depression. I will keep you posted. Sending prayers back.

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@summertime4
Great news!!!!!!
Yes, it is difficult to figure out who does what.
I also see a podiatrist for my neuropathy.
She mostly checks to make sure that she can get a pulse in my feet.
She was also the one that sent me to have a brace made (BTW....it works great!).
I am also seeing a vascular doctor to make sure my blood flow is good (which is isn't).

Good luck!
Ronnie (GRANDMAr)

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Mentor
John, Volunteer Mentor | @johnbishop | May 22, 2019
In reply to @chattty "Hi I’m Cathy and 57 Years of age. I’ve been told I have peripheral neuropathy of..." + (show)
@chattty

Hi I’m Cathy and 57 Years of age. I’ve been told I have peripheral neuropathy of which I sincerely believe is wrong. I had diabetes for a few years never out of control, always borderline. I instead believe I got it from the drug levaquin I received in the hospital for pneumonia. It started as soon as I got out of the hospital. Needless to say I have it.i can’t get rid of it and I need to learn to live with it. Which is why I’m here. I think I’m going bonkers I’m in so much pain. Started in my toes then whole feet and almost to my knees. Started in my fingers up my both sides now. I believe it will kill me. That’s all.

Jump to this post

Hi @chattty, welcome to Connect. I also have neuropathy but only have the associated numbness and no pain. I have no medical training or background but do think that when there is a risk with some treatments and the patient has to be involved in the decision whether to have the treatment or not. I'm sorry that your neuropathy may have be caused by the Levaquin treatment for pneumonia. It's hard to know the outcome had you not had the treatment. There is a lot of evidence that supports your thinking of what caused your neuropathy.

FDA Drug Safety Communication: FDA requires label changes to warn of risk for possibly permanent
nerve damage from antibacterial fluoroquinolone drugs taken by mouth or by injection (PDF)
-- https://www.fda.gov/media/86575/download

Are you on any treatments or therapy to help with the pain from your neuropathy? I have idiopathic small fiber peripheral neuropathy. You can read my story and what has helped me in a post earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Hope you find some answers.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | May 22, 2019
In reply to @summertime4 "chatty Thank you. I have my first visit with the neurologist today. I believe the neurologist..." + (show)
@summertime4

chatty Thank you. I have my first visit with the neurologist today. I believe the neurologist is the doctor who treats neuropathy. I don't know who does what anymore. There is good news. I had a Echo done on my heart this week. They were looking at the possibility of a heart problem which may be causing the fluid retention in my leg and foot. This awesome doctor called me back the same day to tell me my heart is strong and not the reason for fluid retention. Maybe the vitamin D in the sunshine with help with my depression. I will keep you posted. Sending prayers back.

Jump to this post

Hi @summertime4, have you been checked for lymphedema? I also had some issues with swelling in my legs and fluid retention. I was diagnosed with lymphedema and now wear compression socks which helps the body get rid of the excess fluid.

Mayo Clinic has some information on Lymphedema here:
-- https://www.mayoclinic.org/diseases-conditions/lymphedema/care-at-mayo-clinic/mac-20374693

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