Living with Neuropathy - Welcome to the group

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 .

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.

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

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.

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/

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?

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

Hi, my name is Rick. I started having some numbness in my toes in 2015 when I was 72. The numbness gradually continued into my feet. The feeling was like I was wearing socks all the time.

In the past year, I can feel some numbness and maybe some weakness from my knees down. I have never had any pain or burning and I can walk/run without any issues.

A neuro doc diagnosed me with PN after minimal testing. I have not had any type of testing to further define the type of PN I have.

With this limited information, are their any thoughts the group can offer concerning my condition?

After 6 years of numbness without any pain, should I expect the pain to start or is there a PN type without pain?

Should I expect the numbness to continue up my legs such that I will need assistance to walk?

What suggestions do you have for me to get further testing?

So glad to find this group. Wishing everyone well.

Rick

PN and statin drugs? I had symptoms develop with "wearing socks" effect in feet and lower legs that seemed to coincide with increase in Lipitor from 40mg to 80mg daily as ordered by my cardiologist. I am not diabetic. My cholesterol is not dramatically high and I was taking 40mg for several years, but the cardiologist made the increase. The symptoms onset about two months after the Lipitor increase - cardiologist said it is just coincidence. Has anyone had a similar experience or any insight on potential association of statin drugs and PN? Any alternative medications for cholesterol that you take that reduced or eliminated PN? Thanks!

Hi Rick @sam31, Welcome to Connect. I went for 20+ years with the numbness starting in my toes but never had any associated pain. I'm 78 now and the numbness is around the ankles and feet. There are a couple of discussions you may want to read through and learn what others have shared helps them.

Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

When I first discussed the numbness in the toes, my primary care doctor told me it was probably nerve damage but they could run some tests to determine if that's what it was. My next question was if they find out it's nerve damage what can you do to help? His answer was nothing can be done for the numbness. The medications are all to treat pain symptoms. So, I waited 20 years and the numbness felt like it was just below my knees and I was having the same concerns and questions as your asking now. I had the nerve conduction testing and met with the neurologist for a physical exam and was diagnosed with idiopathic small fiber peripheral neuropathy. I went home pretty disappointed when getting the same answer about what can you do to help the numbness --- nothing can be done. That's pretty much my story and how I found Connect while searching for a local support group. I posted my story and what has helped me some in the discussions above. Here's my neuropathy journey story - https://connect.mayoclinic.org/comment/310341/

While you may expect the numbness to continue up your legs (same thing my neurologist told me), there are things you can do to help. I'm not sure I would have additional testing unless I believed it wasn't neuropathy. My neurologist said about 20% of people with neuropathy don't have pain as a symptom and to consider myself lucky. So, I made a decision to learn as much as I can about neuropathy, available treatments, and things that I can do myself to help my situation. A couple of my go to websites for learning about neuropathy:

-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/
-- And for medical research searching: https://scholar.google.com/

If you can walk and run, keep doing it 🙂 Have you made any lifestyle changes to help?