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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: May 26 10:50am | Replies (6004)

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@safetyguy72

Thanks, happy to find this group. I have had idiopathic neuropathy for at least 5 years. So far it has not progressed beyond the pain in feet. I stoped going to my Neurologist this year, because there wasn’t anything he could do. Went through pain management for two years with no relief. I have come to the realization that I will live with this the rest of my life. Sorry if that discourages anyone, and hopefully a new treatment will be discovered.

Just lately I get the sensation that water is running down my legs. I have actually reached down to see if they are wet! Has anyone experienced this and is it something I need to relate to my GP or neurologist?

TIA

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Replies to "Thanks, happy to find this group. I have had idiopathic neuropathy for at least 5 years...."

Hi safetyguy, I have had SFN for 2 yrs. in my feet and hands and had experienced the dripping water feeling initially but then it stopped. I very rarely experience it any more and if so it is very slight and lasts for only a few seconds. That was one of the crazier but easiest symptoms to deal with. Can I ask what you take for your feet neuropathy? My neuro feels she can only suggest how to deal with the pain since there are no alternatives currently. I take gabapentin nightly plus supplements and vitamins. Best to you, Helen

Hello @safetyguy72, Welcome to Connect. You are definitely not alone and there are quite a few other members who share your symptoms. I have idiopathic small fiber PN myself but only have numbness. There is a wealth of patient experience here on Connect so we are glad you are here with us. Here are a few other discussions that you and @constitution may want to consider following and posting any questions you may have.

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

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

Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/

@rwinney @jesfactsmon and other members may have some thoughts or suggestions for you.

You mentioned going to pain management for two years. Do you mind sharing a little more information about what they tried to help with the pain?

Hi and welcome to Connect @safetyguy72. I'm sorry to hear of your neuropathy and problematic feet. I have Small Fiber Polyneuropathy and went through a period of cold flush down my legs, among other oddities. Connect members have mentioned their experiences of water dripping down legs. Do you take Lyrica or Gabapentin for these nerve misfires? Do you take supplements for neuropathy? I have found benefit from Acetyl L Carnitine and Stabalized R Alpha Lipoic Acid along with B12, magnesium and a host of other vitamins and minerals found in the "Protocol". It is a supplement regimen that I began last September and have found between it and Lyrica, my odd sensations have reduced greatly. I understand when you say you've actually felt your leg for water! I have looked, felt, looked again at many weird sensations. It's wild that our nerves can mess with us like that.

Hi @safetyguy72 I am married to someone who has had neuropathic burning in her feet from chemo for 6 years. Early last year it kicked up to another gear and she has been in much worse shape than before. She tried gabapentin and it did not help her. She has not tried other drugs so far as she is very susceptible to side effects. She might eventually try getting a nerve stimulator which several people who post here have tried with varying success. If you would like to read posts by various people who discuss their experiences you can put the word 'stimulator' into the search bar at the top of this (or any) page and you will see a lot of them, which you can read as you like. I have been hopeful for a new treatment coming online related to sodium channel blockers which can block the pain signals from being perceived by the brain. I did a write up on that myself which you can find at this link:
https://connect.mayoclinic.org/discussion/vgsds-a-potential-breakthrough-on-the-horizon-for-neuropathy-pain/?utm_campaign=search

In case you are interested I have heard of other things for people who want to try to get adventurous. I do not know personally anyone who swears by any of these, but I have read positive anecdotal accounts about some of them:

-scrambler therapy using a device by Calmare company from Italy
-acupuncture
-chinese medicine
-infrared light therapy
-homeopathic remedies made by a naturopathic doctor

I hope you find relief for yourself. It's turning out to be quite a journey for my wife and I, and not a terribly pleasant one at that. If you have any other questions or comments feel free to post them here. You will find an attentive and sympathetic audience with this group of very excellent fellow pain veterans.

Best, Hank