Connect
Living with Neuropathy - Welcome to the group
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
@airpod - Here's a website you might want to bookmark for neuropathy - helps answer a lot of neuropathy questions.
Neuropathy Commons -- https://neuropathycommons.org/
-
Like -
Helpful -
Hug
1 ReactionHi Hank, FYI, I take 300 mg. gabapentin 1x at night and I am good for 24 hrs. I could probably take more during the day but prefer not to and put up with the discomfort. I have read that less is better with gabapentin, better to start off slow and increase the dosage if/when necessary. My Dr. originally prescribed a higher dose to be taken 3x day but I couldn’t function so I cut back. Everyone’s body reacts differently to drugs, so I think often better to start off slowly. P.S. I do not take any other prescription meds so that may be a factor. Helen
-
Like -
Helpful -
Hug
1 ReactionHi Airpod, small fiber neuropathy is not detectable from nerve conduction testing, that is possibly why your doctor may have appeared confused; a skin punch biopsy can determine SFN. I also was negative on these tests (and all labs) My diagnosis was idiopathic SFN. Most people on this forum have not found any relief for numbness unfortunately so our goal has been to find pain relief. I wish you well in finding all the answers you need and some positive outcomes. Helen
-
Like -
Helpful -
Hug
3 Reactions@airpod I am diagnosed with pheripherial neuropathy. I had the test done and it was bye "Wear shoes at all times" "you habe pheripherial neuropathy. Now my pain managment doctor says she thinks it is poly neuropathy. What/ how much difference and do I have both? Thank you.
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?
-
Like -
Helpful -
Hug
2 Reactions@airpod @johnbishop I've come to realize that seeing neurologists for neuropathy is a waste of time as they seem to do little beyond offering Gabapentin, Lyrica and Cymbalta. I suspect that many members of MayoConnect are more knowledgeable about neuropathy than the average neurologist. The only neurologist that really helped me was a Russian-trained female neurologist I saw when I was living in Massachusetts after being diagnosed with SFN at Mayo Clinic (January 2017, six months after I first experienced symptoms in my feet). She admitted that very little was known about SFN, its causes and treatments. We had serious discussions, and she recognized that I was willing to do whatever might be needed to find the help I needed. When she encouraged me to get an appointment with Dr. Louise Oaklander (the SFN "guru") in Boston, I began the process. Unfortunately, before I was able to get that appointment, I moved to Missouri. Then I waited months for an appointment with a neurologist at Washington University Medical School in St. Louis. Total waste of time: More tests, try Gabapentin, Lyrica or Cymbalta and see a movement disorders neurologist. Then another Mayo neurologist who said my problem was in my cervical spine and suggested surgery, adding that I didn't have neuropathy!!! Meanwhile, neuropathy has overtaken most of my body. I'd about given up thinking I'd find the help I needed at Mayo Clinic until earlier this year when I decided that I needed to find Pain Medicine doctors at Mayo, which I have done. I saw them last summer, and recently returned from Rochester, MN, where I underwent a 7-day trial with a spinal cord stimulator. Now I must decide if I want a SCS implanted in my body.
-
Like -
Helpful -
Hug
3 Reactions@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?
-
Like -
Helpful -
Hug
3 ReactionsHi @summertime4
My understanding is that peripheral neuropathy is what all neuropathy is called that is outside of the CNS, the central nervous system (brain + spinal cord). So you can have polyneuropathy (many nerves) or mononeuropathy (a single nerve) but they are both considered peripheral neuropathy if they occur outside of the CNS, like in arms, legs, feet, face, etc. Hope this helps. Hank
-
Like -
Helpful -
Hug
4 Reactions@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
-
Like -
Helpful -
Hug
4 Reactions@steeldove, I hope the spinal cord stimulator works for you if you choose that route. It is a choice we all have to make when faced with the reality that neuropathy has no cure unless of course it's caused by nerve damage or compression that can be fixed by surgery (IMHO). So the doctors/neurologists treat the pain symptoms with drugs that basically tell the brain to ignore the nerve signals coming from the damaged nerves. I may be over simplifying it and it's just my non medical opinion but I haven't found any evidence to change my mind. Because I only have numbness I chose the supplements route to try and provide the cellular nutrition the nerves need to heal and possibly get back to normal. There are a lot of unknowns no matter what choices we make which is why it's really great that we can share patient experiences and learn from each other.
What kind of concerns do you have about having the SCS implanted?
-
Like -
Helpful -
Hug
2 Reactions