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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 17 hours ago | Replies (6026)
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@robtlhughes

I was diagnosed with idiopathic peripheral neuropathy about 18 months ago, primarily of the sensory kind. I've had an EMG/NCS and a plethora of blood tests. I take 600 mg of gabapentin at bedtime to help with sleep. There is no pain. But it began with uncomfortable, hard-to-describe numbness in my feet that over the past several months has crept up to my knees. After five or six hours in bed at night, my legs start to feel like they're burning, keeping me awake. Once I'm up and about it quickly and mostly disappears. My readings and Dr. Google suggest nothing can be done. The doctors around here don't disagree with that. I have an appointment at a teaching hospital in July, but because it's 500 miles away and because of the coronea virus, I'm thinking what's the point. Any experiences or advice to share will be welcomed.

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Replies to "I was diagnosed with idiopathic peripheral neuropathy about 18 months ago, primarily of the sensory kind...."
John, Volunteer Mentor | @johnbishop | Apr 26, 2020

Hello @robtlhughes, Welcome to Mayo Clinic Connect. I also have idiopathic small fiber peripheral neuropathy and understand your feeling about what is next. You have taken a great first step by starting your journey of learning everything you can about your condition so that you can ask better questions and hopefully get better answers from your healthcare team or doctors. There are a few discussion here on Connect that you may want to join in and follow to learn what other members with similar symptoms have shared.

- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
- Eliminating Foods for Neuropathy pain: https://connect.mayoclinic.org/discussion/neuropathy-pain-1/
- Ideas for pain relief from Small Fiber Neuropathy (SFN): https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

There are a couple of websites with resources for learning more about neuropathy that may be helpful for you:

- Neuropathy Commons: https://neuropathycommons.org/
- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/lifestyle/nutrition/

I've been where you are with what's the point and all I can do is tell you it's a learning process and share my experience. Being that I let my neuropathy progress for 20+ years before seeking a diagnosis I would in retrospect would have tried to get a diagnosis sooner. Because I only had numbness with my neuropathy and I asked if I have the nerve test and you determine I have nerve damage what treatment will help with the numbness. They told me they didn't have a treatment that would help so I just let it go. The result may still have been the same for me but I would have started my learning process earlier and who knows what would have happened...I don't 🙂 One question you might ask your current doctor if you don't have pain with your neuropathy -- why did they prescribe Gabapentin? When I finally started asking my care team questions and looking into the numbness in my feet and legs my primary care put me on Gabapentin. After 2 weeks and no change I met with the doctor and asked her why the was no change. She brought the other care team members and leader into the discussion and they had me describe my symptoms which were numbness only, no pain. Then they said Gabapentin only helps with the pain and does nothing for numbness so I stopped taking it. Gabapentin comes with it's own side effects which you may or may not have. Mayo Clinic has some information here: https://www.mayoclinic.org/drugs-supplements/gabapentin-oral-route/side-effects/drg-20064011

Do you have pain associated with your neuropathy?

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Colleen Young, Connect Director | @colleenyoung | Apr 26, 2020

Hi @robtlhughes, I'd like to add my welcome. You'll notice that I moved your message to this existing discussion:
- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I did this to introduce to all the members of the group so you can connect with other who have idiopathic peripheral neuropathy. Click VIEW & REPLY to scroll through past messages. Like you, several members experience numbness and burning, but no pain.

What do you do to relieve the burning?

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