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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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@specialty555

I have poly neuropathy but now they are trying to figure out adrenal glands issue. Did they give you any ideas on what to do with neuropathy?

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Replies to "I have poly neuropathy but now they are trying to figure out adrenal glands issue. Did..."

@specialty555 Welcome to Mayo Clinic Connect. It sounds like you are looking for advice on how to treat neuropathy. Below are two discussions about neuropathy that you may find useful.

- Anyone here dealing with peripheral neuropathy? https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/

- Peripheral Neuropathy - Stretching and Exercise https://connect.mayoclinic.org/discussion/peripheral-neuropathy-stretching-and-exercise/

@lorirenee1 @jesfactsmon @sunnyflower @johnbishop @maryv449 are all active members in the neuropathy group and they may be able to help you answer your question.

@specialty555 Would you tell me more about your neuropathy? Where on your body do you experience neuropathy and how long have you had these symptoms?

@specialty555
Hi there, my wife has had PN in her feet/ankles for 6 years. She does not do well with drugs and hates the thought of taking them in any case. Like you, she got no help from gabapentin and quit it. You ask for ideas. Here is the regime she follows:

1. healthy low sugar diet
2. 28 different supplements, best quality ones she can find; the ones specifically for PN include include benfotiamine, r lipoic acid coupled with acetyl l carnitine, Theracurmin (curcumin product recommended by @jeba ) for inflammation, and PEA (PALMITOYLETHANOLAMIDE).
3. she uses Penetrex (roll on, not the cream) on her feet before going to bed as it calms the pain down by about 30% for long enough to get to sleep. Before applying the Penetrex she soaks her feet in water, as hot as she can tolerate, which seems to help.
4. She has an electric fan blowing on her feet both during the day when she is sitting and at night while sleeping (she sticks her feet out at the end of the bed).
5. she keeps her stress level WAY down at all times and does not leave home most days. She tries to get regular sleep and enough sleep
6. She uses cannabis and kratom when her pain level goes beyond her ability to tolerate it.

Using these methods, she is, so far, managing to cope with her pain. The one thing that is lacking in her lifestyle is enough exercise. She says she is too weak most of the time, as she gets really hammered with the severity of the pain. Hope you find some or any of this helpful. Best, Hank

@specialty555, I would like to add my welcome to Connect along with @erikas, @jesfactsmon and other members. Do your doctors think that the adrenal insufficiency may be related to your polyneuropathy symptoms? Here's a few articles with information about the conditions.

POEMS syndrome: a rare cause of adrenal insufficiency in a young male:
- https://edm.bioscientifica.com/view/journals/edm/2019/1/EDM19-0010.xml

POEMS: An expertise in the rare leads to a rare opportunity: https://connect.mayoclinic.org/page/hematology/newsfeed-post/poems-an-expertise-in-the-rare-leads-to-a-rare-opportunity/