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?

@madsoann8

Thank you Rachel for your reply. I am 93 years old and have been dealing with peripheral neuropathy for 5 years. I have been through physical therapy twice and then set up with a trainer at a gym. Now that the gym is no longer available I find the neuropathy expanding. I do avoid processed foods and consume a number of supplements, including ALA and a number of B vitamins. I am finding sleep difficult now with the uncomfortable feeling of movement up and down my legs and burning in the feet. Any suggestions?

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@madsoann8 ☆☆☆ I salute you!! ☆☆☆
I am 50 and you have just inspired me. What a great work ethic you have. Try Acetyl L Carnitine in addition to your R-ALA. Reducing sugar, salt, spice, alcohol,which you probably do. I neglected to mention in my first post, medical marijuana. If it's legal in your state, it can be helpful for pain, especially burning and aching. I use it occasionally, mostly at bed time. Best of luck to you my dear. 🌷
Rachel

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@madsoann8

Thank you Rachel for your reply. I am 93 years old and have been dealing with peripheral neuropathy for 5 years. I have been through physical therapy twice and then set up with a trainer at a gym. Now that the gym is no longer available I find the neuropathy expanding. I do avoid processed foods and consume a number of supplements, including ALA and a number of B vitamins. I am finding sleep difficult now with the uncomfortable feeling of movement up and down my legs and burning in the feet. Any suggestions?

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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

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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.

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@jesfactsmon

Hi @summertime4 when you say stimulator are you talking about a spinal cord stimulator? Two people who have mentioned having one are @jimhd and @barbbie both of whom had some luck with theirs, And I also remember someone had mentioned having zero luck with theirs and were thinking of having it removed, can't remember who that was. If you put the words spinal cord stimulator into the search box at the top of any page you will find some references made by people anywhere on Connect which you might find helpful also. Best, Hank

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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.

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@rwinney

@summertime4 I hear you and respect your feelings. The Protocol is costly indeed. I never ordered through the site direct. I did my own research, once seeing their game plan, jotted down their recommendations and ordered on my own. I mostly use the brand's they use for high quality but, can be subject to change. Everyone has to do what's best for them in order to get by. I hope you at least are able to look into the most essential parts of the Protocol like, R -Alpha Lipoic Acid and Acetyl L Carnitine. Maybe ask your Neurologist what he recommends as bare bones and what you can afford. Something may be better than nothing when it comes to your painful neuropathy. I wish you well and am glad you chimed in. Take care.
Rachel

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@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.

Liked by rwinney, fiesty76, HankB

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@summertime4

@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.

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@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

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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

Liked by rwinney, fiesty76

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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

Liked by fiesty76

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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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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

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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.

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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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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?

Liked by lorirenee1, fiesty76

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@helennicola

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

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I take 900mg of Gabapentin daily. Plus, 50mg of Amitriptyline.

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@cwallen9

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.

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Thanks. Yes I had back surgery, but it was 6 months ago.

Liked by lorirenee1

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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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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.

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@constitution Interesting about the compounding product you talked about. Yesterday I had my yearly contact with my cardiologist via telehealth. Could not understand how he could say my heart was good when we were on the computer. Guess he can see. /actually hast year I had an echo and it was good I guess. Anyhow we got talking about my neuropathy. I asked him if the pain I experience daily which sometimes brings tears to my eyes is all neuropathy pain. He said it could be because neuropathy can be very painful. Anyhow, long story short. After going through my medications and looking at the topicals I use he made a suggestion. Aloe gel. Yes. It has lidicaine. I tried it last night and today and it really helps. No I didn't want to dance, but it was helpful and I will continue using it. I just put a little on the top of my foot where it is so painful and it helped.. What you are using sounds great.

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