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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.

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pixiejacq | @pixiejacq | Jul 4, 2021
In reply to @carlyschneider "Hi everyone! I’m new to the group and excited I found something like this. I was..." + (show)
Profile picture for carlyschneider @carlyschneider

Hi everyone! I’m new to the group and excited I found something like this. I was just diagnosed with immune small fiber neuropathy length dependent. My TS-HDS antibodies were above normal cutoff. The treatment recommended is IVIG. Anyone else had this treatment or this type of neuropathy? Looking forward to connecting 😊

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Hi! I'm new here too! I've not heard of your diagnosis, can you tell me how it was diagnosed please?

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pixiejacq | @pixiejacq | Jul 4, 2021
In reply to @tigreyes2004 "I take cymbalta & Gabapentin. 300 gabapentin i the morning & 300 at night. I find..." + (show)
Profile picture for tigreyes2004 @tigreyes2004

I take cymbalta & Gabapentin.
300 gabapentin i the morning & 300 at night.
I find the cymbalta does help me get on with life. I take 60 mg. It make sme hyper but that is how I get my work done.
Best of luck to you.
Tigreyes.

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Thank you for your response! This is good to know that I can take them both together as I try and decide what to take to start my therapy. As I've read through some of the posts here, I do now have some hope. I'm terrified of taking medications because of side effects, but because my pain has become all consuming, I'm willing to try anything. I'm thinking this site will give me the hope and encouragement I need - thank you!

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pixiejacq | @pixiejacq | Jul 4, 2021
In reply to @jeanniem "@pixiejacq, unfortunately, in my experience, general pain relievers don't do much for neuropathy pain. Nerve pain..." + (show)
Profile picture for jeanniem @jeanniem

@pixiejacq, unfortunately, in my experience, general pain relievers don't do much for neuropathy pain. Nerve pain generally requires a different type of medication. There are a few different options out there. You will get different opinions from different people regarding each of those options. Your best choice is to sit down with a doctor that you trust and who listens to you and discuss which medication choice might be right for you. Talk to your doctor about your concerns and let him know that you want the option to stop taking the medication if you feel that it is not worth the consequences or side effects.

I would also make sure they are checking for additional complications. Sometimes, the doctor will see that we are a diabetic and assume that that is the only reason behind or neuropathy. However, there can be many other things contributing to an increase in nerve pain. It never hurts to rule things out. See if you can notice if anything makes your pain subside, even just a tiny bit. That's great information! A pain specialist might be able to take that information 2 suggest other options that also might help relieve the pain. I find that getting in the pool it's good for my body. But I had to experiment. If I flipper kick, it increases my pain and swelling. But if I use a jog belt in the water and only pull with my arms and do stretching, my body responds very well.

I know I'm not giving you specific answers, and I'm sorry that I cannot. I, personally, have not yet tried Cymbalta. I went on 300 mg of Gabapentin twice a day to help relieve the muscle spasms I was having. I seem to handle it just fine and I know there are others who have not had the same experience. It really is trial and error. I'm so sorry you're going through this.

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Thank you for your response! Since I'm new to seeking help (finally) and have recently gone on Medicare, I have to find a doctor I feel comfortable with. You've been very helpful. I did struggle with CRPS about 18 years ago after a foot surgery. This lead to "Lipodermatosclerosis" in both legs - at least that's what was determined after tests to rule out venous insufficiency. So, your suggestion to see if there is anything else causing the neuropathy makes sense. I haven't been to a doctor to discuss any of these issues for years until I went to an internist last week who suggested the Cymbalta. I should also mention that I sought his help just recently after years of barely manageable pain because I dropped a can on my foot and broke it and it re-activated the CRPS which in turn made the neuropathy 100% worse. I know my issue is complicated, but all comments are welcome and so appreciated.

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shayes | @shayes | Jul 4, 2021

Hello, my name is Sean, I’m from Weirton West Virginia. I’ve been suffering with type 2 diabetes and neuropathy for several years . I’m trying to find out if there are other ways to heal this . I’ve been having all kinds of medication at it . And it is still getting worse .

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bendeb | @bendeb | Jul 4, 2021

Yes, I take 60 mg of Cymbalta in the morning. 600 mg of Gabapenten the rest of the day. No pain. Remember though, everyone is different.

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tigreyes2004 | @tigreyes2004 | Jul 4, 2021

I take my gabapentin first thing in the morning without food & then I wait a little & eat & then take the Cymbalta.
I have no energy when I first get up but after the Cymbalta I am able to function. It does not take the pain away but I guess it gives you motivation. My dr. explained it to me as the gabapentin slows the brain down & the Cymbalta sends a message to your brain that your feeling better. The Gabapentin does make me forgetful & short term memory & that is the side effect I see.
I'm like you, afraid of new meds. I get discouraged at times but keep on moving. I am 71 years old. I notice humidity effects me bad & I am feeling that today . I live in Az.
Hope I was of some help.
God bless
Tigreyes

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carlyschneider | @carlyschneider | Jul 4, 2021
In reply to @pixiejacq "Hi! I'm new here too! I've not heard of your diagnosis, can you tell me how..." + (show)
Profile picture for pixiejacq @pixiejacq

Hi! I'm new here too! I've not heard of your diagnosis, can you tell me how it was diagnosed please?

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It was dx by skin punch (biopsy of three parts of my leg, ankle, just above the knee and thigh) and a antibodies test which showed higher level of TS-HDS antibodies.

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Mentor
John, Volunteer Mentor | @johnbishop | Jul 4, 2021
In reply to @pixiejacq "Hi John, thank you for your quick response and the links. I'll spend time today reading..." + (show)
Profile picture for pixiejacq @pixiejacq

Hi John, thank you for your quick response and the links. I'll spend time today reading through them. I'm not familiar with "complementary or integrative therapies" - what are those?

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If you read the heading on the Living Well with PN link in my earlier post, it will explain it much better than I can. Here's the link again - — Living Well with PN: https://www.foundationforpn.org/living-well/

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Mentor
John, Volunteer Mentor | @johnbishop | Jul 4, 2021
In reply to @shayes "Hello, my name is Sean, I’m from Weirton West Virginia. I’ve been suffering with type 2..." + (show)
Profile picture for shayes @shayes

Hello, my name is Sean, I’m from Weirton West Virginia. I’ve been suffering with type 2 diabetes and neuropathy for several years . I’m trying to find out if there are other ways to heal this . I’ve been having all kinds of medication at it . And it is still getting worse .

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Hello Sean @shayes, Welcome to Connect. You are off to a good start here on Connect which is a great place to learn what others have shared about their neuropathy journey and what has helped and not helped. There is another discussion you may want to read through and learn what others have shared:

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Here are a couple of my favorite sights to learn more about neuropathy and the different treatments:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/lifestyle/managing-peripheral-neuropathy/
-- Neuropathy Commons: https://neuropathycommons.org/

You mentioned you also have type 2 diabetes. Have you made any lifestyle changes to help with your diabetes which may also help with your neuropathy?

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Hayabusa1300 | @milesdaviskindofblue | Jul 5, 2021

Cymbalta did nothing for me but tear my stomach up I take Gamapetin 4200 mg’s
900 mg 5 times a day I have a Boston Scientific Implant and I still can’t get any relief I too ask for a better pain medication
and was denied it by my pain doctor and my Neurologist its totally ridiculous so what do you do just deal with the pain 24-7 I bet if they had the symptoms they would be on something to give them some relief it’s like pulling teeth to get help. The drug attic’s in our communities did this by selling them on street and now it’s makes hard for people that actually need it to get the pain meds that we all so need

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