Living with Neuropathy - Welcome to the group

Hi @madsoann8 I feel for you as I watch my own wife go through much the same sort of pain as you describe. Among some of the things she has found helpful are as follows:

-cold water (but not too icy cold) for occasional short term relief of the burning in the daytime or early evening
-she has some gel foot slippers (bought off the internet) which she gets relief from sometimes; they stay in the freezer at all times until
she wants to put them on
-hot water, as hot as she can stand it (not scalding of course) just before bedtime sometimes allows her to not feel the burning long
enough to allow her to relax and go to sleep occasionally
-Penetrex, a homeopathic roll on product that usually gives her some relief, she says about a 20-30% reduction usually for a few hours;
this product is available from Amazon, not super cheap but it's worth it to her
-if you have a partner sometimes gentle rubbing of the burning areas or else massage sometimes might provide some relief; I actually rub
her feet for 15 minutes lightly after she is in bed which helps her (she has always loved having her skin rubbed -I would hate it personally)
-she has a table fan blowing on her feet all day (and night) which you may already do, but she can't do without that

Not sure I haven't missed something but these are definitely the main things she does. Maybe one of these ideas might be helpful to you.

Best, Hank

Hi @jesfactsmon and @madsoann8 I agree rubbing is helpful. It promotes circulation. My 90 year old mother gets up to rub her legs and arms when she can’t sleep from a neuropathy flare up. She swears it decreases her pain so she can sleep.

I had a spinal cord stimulater for 5 years. I became super sensitive to it and had it removed. It helped a bit but was difficult to program for relief. I think it is great relief for a number of people.

@rwinney Thank you for your response. You know I was looking at the Alpha-Lipoic Acid recommended as part of the Protocol. Duh, I just go and look and see that my neurologist recommended this to me during our last visit 6 months 3 months ago. It was the 1st time he recommended this supplement. He said it is being used for neuropathyand all the results are not in he believes it may have some good action. I have only been taking it about 2 weeks and so far don't notice a difference in pain level. However, it will take longer. So, to self, always be open to new things. I will continue with the Alpha-Lipoic Acid and I am on part of The Protocol. How interesting I find this.
I am taking 600 mg daily.

@summertime4 Haha - no worries! Glad it's all working out for you. Always best to follow your Drs. recommendation or seek their approval. FYI...Stabalized "R" - Alpha Lipoic Acid is said to be of best quality and potency. Funny, my Doc never recommended anything to me until I asked about supplements which, thankfully, I learned from this forum. Always best to keep eyes, ears and mind open, and advocate for ourselves. Keep up the good work and I hope you feel some results in a couple of months. My results came in the form of less odd sensations and random pains, not necessarily major pain relief.
Be well,
Rachel

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

TIA
I am similar story, feet only, 3 years. Recently my pharmacist (who has prescribing and compounding authority) prepared a spray on foam consisting of Dichlofenac and Lidocaine in a Menthol spray on foam solution. So far, I have found it quite helpful. D T

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

I have heard that the "water running down your legs" symptom can be caused by anachroiditis. This is basically a condition that affects the nerves in your spine. Did you have any steroid shots, chemotherapy, etc near your back? There is a retired doctor (Dr. Tennant) that does research in this area and has a medicine protocol that is supposed to help. Here is his website http://arachnoiditishope.com/ . Maybe this could help.

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?