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?

@summertime4

@twinny Thank you for your reply. Yes, I do remember john having the numbness. I will go after him. Well you know what I mean. ha ha

Jump to this post

@summertime4, sorry I missed your first post and thanks to Rachel @rwinney for bringing me back into the discussion. I posted my initial story on my small fiber PN and numbness and links to the supplements and how I found them earlier here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I've been taking the supplements since Sept 2016 and noticed an improvement after 2 months when the numbness that was just below the knees seemed to go to just above the ankles. It stayed there until recently when I've started to notice some feeling in my feet and toes but they also still feel numb too…kind of hard to describe but it does feel better. Part of the improvement may be due to losing a little weight which I'm still working on, more exercise (not real intense stuff) and a new exercise device called the Sand Dune Stepper
(https://www.sanddunestepper.com/) that I use daily for 30 to 60 minutes in 15 minute increments throughout the day. It feels good on the feet and is basically walking in place but there are a lot of other exercises that you can do with it. I originally bought it because I thought it would help improve my balance and I do think it is helping. I also wear low cut white socks to bed every night more to protect the feet and let me know if I've stepped on something without knowing it and injured the foot. Before I put the socks on each night I put body lotion on my feet and legs to keep the skin moisturized which I think also helps if you are an old coot like I am 🙂

Liked by lorirenee1, rwinney

REPLY

@johnbishop Thank you John. I am doing water therapy and it helps at least for a while in the water. Right now it is difficult with their scheduling but so fortunate that they are allowed to be open for physical therapy. This numbness is bad as you know. Half the time I don't know if I have socks on and how high they are. I always feel like I have heavy boots on that go up to my knee. There have been times when I looked down just to be sure I didn't have boots on. I will be going to your page and look at what you have done. Thanks again.

REPLY
@summertime4

I don't mean to change up but I did not know where to ask. Does anyone have any tips on dealing with the numbness. My legs from the knees down are numb. So numb it is scary. I am a member of this group and have neuropathy. The numbness and heaviness are really doing a job on me mentally and physically.

Jump to this post

Good afternoon @summertime4, The numbness, oh yes, the numbness. Here are my tips for today. One of the reasons I had to figure this out was because I need to be able to drive. My feet were not only numb but also the skin felt thick like leather to me but not to the therapist. So there are layers of numbness. Myofascial Release (MFR) and legs up the wall keep me driving. The therapist actually places my feet on her shoulders and uses pressure to bring some life back. You can do this at home with a partner. I also do “legs up the wall” every morning. It is a yoga pose that is very helpful. While your legs are up the wall, you “Point and flex” your feet and then turn your ankles.

I also rub my feet on good thick carpet. You can purchase the knobby rubber things or just scoot your feet back and forth on artificial turf.

Let me know what else you hear about and how it works for you.
Be content in the stillness.
Chris

REPLY

Hello Friends in Neuopathy,
I posted back the Autumn of last year but have finally, finally gotten in to see my Neurologist to get a definitive diagnosis. I have small nerve neuro in my feet. Muscles and bones are ok—grateful for anything ruled out:)

Thank you John, for the refreshed link to your 2017 posting…I could read it with fresh eyes now that I know my problem is actual nerve damage/dying in my feet. No wonder Ibuprophen and PT for muscles did nothing to lessen what I now know to be nerve pain.

Doc has me trying Salonpas with Lanocane with no relief. Next up, I’ll try Lyrica. Will check-out the vitamin regimen suggested here. Already tried Gabapentin last Fall with my GP with only side-effects to show for it. Did not help with the feet.

If there are other things just for pain anyone here can direct me to to try please let me know. Were it not for the pain, I’d be able to walk.

Thx! Diane

P.S. Not taking ANYTHING away from PT for the muscular aspect which is vitally important with or without neuro issues 🙂

REPLY
@southwind

Hello Friends in Neuopathy,
I posted back the Autumn of last year but have finally, finally gotten in to see my Neurologist to get a definitive diagnosis. I have small nerve neuro in my feet. Muscles and bones are ok—grateful for anything ruled out:)

Thank you John, for the refreshed link to your 2017 posting…I could read it with fresh eyes now that I know my problem is actual nerve damage/dying in my feet. No wonder Ibuprophen and PT for muscles did nothing to lessen what I now know to be nerve pain.

Doc has me trying Salonpas with Lanocane with no relief. Next up, I’ll try Lyrica. Will check-out the vitamin regimen suggested here. Already tried Gabapentin last Fall with my GP with only side-effects to show for it. Did not help with the feet.

If there are other things just for pain anyone here can direct me to to try please let me know. Were it not for the pain, I’d be able to walk.

Thx! Diane

P.S. Not taking ANYTHING away from PT for the muscular aspect which is vitally important with or without neuro issues 🙂

Jump to this post

@southwind Lyrica reduced my pain. The only problem was that I was one of the lucky few who experienced side effects, which landed me in the hospital. But I understand that it works well for lots of people.

Jim

REPLY

@jimhd What kind of side effects did you have from Lyrica. Also, what are some of the serious side effects from Gabepentin? Thank you.

Liked by southwind

REPLY

@summertime4

What I experienced with Lyrica was incoherence, couldn't complete a sentence, memory loss, profound dizziness and tachycardia. This happened before I had reached the full dose, after a few weeks of taking it.

I don't know about Gabapentin. I think that it dulled my thinking. That's what is called cognitive deficit. It was a long time ago.

Jim

Liked by southwind

REPLY
@jimhd

@summertime4

What I experienced with Lyrica was incoherence, couldn't complete a sentence, memory loss, profound dizziness and tachycardia. This happened before I had reached the full dose, after a few weeks of taking it.

I don't know about Gabapentin. I think that it dulled my thinking. That's what is called cognitive deficit. It was a long time ago.

Jim

Jump to this post

There is a thread on Lyrica here somewhere 🙂

Liked by southwind

REPLY
@southwind

Hello Friends in Neuopathy,
I posted back the Autumn of last year but have finally, finally gotten in to see my Neurologist to get a definitive diagnosis. I have small nerve neuro in my feet. Muscles and bones are ok—grateful for anything ruled out:)

Thank you John, for the refreshed link to your 2017 posting…I could read it with fresh eyes now that I know my problem is actual nerve damage/dying in my feet. No wonder Ibuprophen and PT for muscles did nothing to lessen what I now know to be nerve pain.

Doc has me trying Salonpas with Lanocane with no relief. Next up, I’ll try Lyrica. Will check-out the vitamin regimen suggested here. Already tried Gabapentin last Fall with my GP with only side-effects to show for it. Did not help with the feet.

If there are other things just for pain anyone here can direct me to to try please let me know. Were it not for the pain, I’d be able to walk.

Thx! Diane

P.S. Not taking ANYTHING away from PT for the muscular aspect which is vitally important with or without neuro issues 🙂

Jump to this post

Good evening @southwind. It is great to see your picture again and to hear about the results from your neurologist. Thank you for being willing to share with other members. I am sure you are happy about the good report for muscle and bones and that you have a better understanding of how small fiber neuropathy (SFN) evolves in your body. Here are a couple of other ideas in response to your request for pain options.

1. Medical cannabis. I depend totally on tinctures and balms of pain-reducing ratios and dosages for pain management. I am happy to help you navigate that beneficial world.

2. Myofascial release (MFR) treatments. Although your results for muscles and bones were good, I would like to suggest that you consider that those body parts are completely covered with fascia. The fascia is protective and has fluidity which creates layers around bones, muscles and even cartilage. When the fascia becomes restricted or stuck, the small nerve fibers cannot complete their task and so our brain just sends back pain signals.

If you would like more information about fascia you can find it here.

There is a discussion on Connect at this location about the benefits of MFR..
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
May you be free of suffering and the causes of suffering. That means you will be walking.
Chris

REPLY
@artscaping

Good evening @southwind. It is great to see your picture again and to hear about the results from your neurologist. Thank you for being willing to share with other members. I am sure you are happy about the good report for muscle and bones and that you have a better understanding of how small fiber neuropathy (SFN) evolves in your body. Here are a couple of other ideas in response to your request for pain options.

1. Medical cannabis. I depend totally on tinctures and balms of pain-reducing ratios and dosages for pain management. I am happy to help you navigate that beneficial world.

2. Myofascial release (MFR) treatments. Although your results for muscles and bones were good, I would like to suggest that you consider that those body parts are completely covered with fascia. The fascia is protective and has fluidity which creates layers around bones, muscles and even cartilage. When the fascia becomes restricted or stuck, the small nerve fibers cannot complete their task and so our brain just sends back pain signals.

If you would like more information about fascia you can find it here.

There is a discussion on Connect at this location about the benefits of MFR..
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
May you be free of suffering and the causes of suffering. That means you will be walking.
Chris

Jump to this post

Thanks all who replied to my qs!

Chris @artscaping — I’ll definitely look into the fascia treatment you cited! During my 6 mo of PT, there was a therapist who worked specifically on my foot fascia which needed kneading;) Was greatly beneficial for my foot movement so I see the value of addressing the fascia. What a wondrous contribution it makes in the body. Had never even heard of it before till last Fall. And yes, I’d love to discuss the cannabis regimen with you. I tried it topically a few times, but even a high dose added no relief from pain. Yet, I haven’t a clue if I was doing it correctly.

Thx for the video clip…sure it will be of benefit to many folks out here.

@summertime4 — When I tried Gabapentin, had very bad bowel movements. However, I was only on it a month as that’s a problem for me even without the np.;)

REPLY
@southwind

Hello Friends in Neuopathy,
I posted back the Autumn of last year but have finally, finally gotten in to see my Neurologist to get a definitive diagnosis. I have small nerve neuro in my feet. Muscles and bones are ok—grateful for anything ruled out:)

Thank you John, for the refreshed link to your 2017 posting…I could read it with fresh eyes now that I know my problem is actual nerve damage/dying in my feet. No wonder Ibuprophen and PT for muscles did nothing to lessen what I now know to be nerve pain.

Doc has me trying Salonpas with Lanocane with no relief. Next up, I’ll try Lyrica. Will check-out the vitamin regimen suggested here. Already tried Gabapentin last Fall with my GP with only side-effects to show for it. Did not help with the feet.

If there are other things just for pain anyone here can direct me to to try please let me know. Were it not for the pain, I’d be able to walk.

Thx! Diane

P.S. Not taking ANYTHING away from PT for the muscular aspect which is vitally important with or without neuro issues 🙂

Jump to this post

I'm sorry to hear that you have this horrible condition and haven't been able to find any relief. I urge you to try an integrative pain specialist because they apply both rx medications and natural therapies. Maybe call a handful of offices and explain your situation and ask if they treat this. Make a list of questions to ask ahead of time and don't worry about having too many. I've learned that wasting your money jumping from place to place just isn't worth it, not to mention all the bills adding up. My integrative pain specialist has agreed to work with my pain management doctor, PT, and PCP. I hope the information below helps you and anyone else that checks it out.

Dr. Tennant – http://www.arachnoiditishope.com Under 'Medical Care Guides' you will find the medical guide for care and self-help guide. I urge anyone that has neuropathy, Tarlov cysts, arachnoiditis, and any other nerve pain disorders to do some general reading on this site. All nerve realated diseases/conditions have similar symptoms and some of these treatments may help you. After I started reading I could't stop. I think I read everything on the site. One important thing they recommend is to print some of the guides and other info. out and bring it to your doctors for consideration. maybe if they are willing to take a look they will be open to other treatments.

Eliminate Nerve Pain Naturally:
https://www.psychologytoday.com/us/blog/complementary-medicine/200811/eliminate-nerve-pain-naturally
Alpha Lipolic Acid 300mg 2x per day
Acetyl-L-Carnitine 2000 mg per day
Inosistol 500-1000 mg per day
Vitamin B6 50-100 mg per day
Vitamin B12 500-5000 mcg per day

Take care and let us know if you find the info. informative and if you try any of the treatments.

REPLY
@qball2019

I'm sorry to hear that you have this horrible condition and haven't been able to find any relief. I urge you to try an integrative pain specialist because they apply both rx medications and natural therapies. Maybe call a handful of offices and explain your situation and ask if they treat this. Make a list of questions to ask ahead of time and don't worry about having too many. I've learned that wasting your money jumping from place to place just isn't worth it, not to mention all the bills adding up. My integrative pain specialist has agreed to work with my pain management doctor, PT, and PCP. I hope the information below helps you and anyone else that checks it out.

Dr. Tennant – http://www.arachnoiditishope.com Under 'Medical Care Guides' you will find the medical guide for care and self-help guide. I urge anyone that has neuropathy, Tarlov cysts, arachnoiditis, and any other nerve pain disorders to do some general reading on this site. All nerve realated diseases/conditions have similar symptoms and some of these treatments may help you. After I started reading I could't stop. I think I read everything on the site. One important thing they recommend is to print some of the guides and other info. out and bring it to your doctors for consideration. maybe if they are willing to take a look they will be open to other treatments.

Eliminate Nerve Pain Naturally:
https://www.psychologytoday.com/us/blog/complementary-medicine/200811/eliminate-nerve-pain-naturally
Alpha Lipolic Acid 300mg 2x per day
Acetyl-L-Carnitine 2000 mg per day
Inosistol 500-1000 mg per day
Vitamin B6 50-100 mg per day
Vitamin B12 500-5000 mcg per day

Take care and let us know if you find the info. informative and if you try any of the treatments.

Jump to this post

@southwind
I apologize for the mistake with the link to 'Eliminate Nerve Pain Naturally'. Here is the correct one…
https://www.psychologytoday.com/us/blog/complementary-medicine/200811/eliminate-nerve-pain-naturally

REPLY
@qball2019

I'm sorry to hear that you have this horrible condition and haven't been able to find any relief. I urge you to try an integrative pain specialist because they apply both rx medications and natural therapies. Maybe call a handful of offices and explain your situation and ask if they treat this. Make a list of questions to ask ahead of time and don't worry about having too many. I've learned that wasting your money jumping from place to place just isn't worth it, not to mention all the bills adding up. My integrative pain specialist has agreed to work with my pain management doctor, PT, and PCP. I hope the information below helps you and anyone else that checks it out.

Dr. Tennant – http://www.arachnoiditishope.com Under 'Medical Care Guides' you will find the medical guide for care and self-help guide. I urge anyone that has neuropathy, Tarlov cysts, arachnoiditis, and any other nerve pain disorders to do some general reading on this site. All nerve realated diseases/conditions have similar symptoms and some of these treatments may help you. After I started reading I could't stop. I think I read everything on the site. One important thing they recommend is to print some of the guides and other info. out and bring it to your doctors for consideration. maybe if they are willing to take a look they will be open to other treatments.

Eliminate Nerve Pain Naturally:
https://www.psychologytoday.com/us/blog/complementary-medicine/200811/eliminate-nerve-pain-naturally
Alpha Lipolic Acid 300mg 2x per day
Acetyl-L-Carnitine 2000 mg per day
Inosistol 500-1000 mg per day
Vitamin B6 50-100 mg per day
Vitamin B12 500-5000 mcg per day

Take care and let us know if you find the info. informative and if you try any of the treatments.

Jump to this post

@qball2019, thank you so much for posting the link from “ Psychology Today”. It was very thorough and informative and helpful. I have long suspected a thyroid connection to my SFN but my Dr. has always insisted that my numbers were within “normal-low”range even though I have had many symptoms of low thyroid for 20 + yrs. When this pandemic has finally run its course I will have to pursue this subject once again with my internist. Helen

REPLY
@qball2019

I'm sorry to hear that you have this horrible condition and haven't been able to find any relief. I urge you to try an integrative pain specialist because they apply both rx medications and natural therapies. Maybe call a handful of offices and explain your situation and ask if they treat this. Make a list of questions to ask ahead of time and don't worry about having too many. I've learned that wasting your money jumping from place to place just isn't worth it, not to mention all the bills adding up. My integrative pain specialist has agreed to work with my pain management doctor, PT, and PCP. I hope the information below helps you and anyone else that checks it out.

Dr. Tennant – http://www.arachnoiditishope.com Under 'Medical Care Guides' you will find the medical guide for care and self-help guide. I urge anyone that has neuropathy, Tarlov cysts, arachnoiditis, and any other nerve pain disorders to do some general reading on this site. All nerve realated diseases/conditions have similar symptoms and some of these treatments may help you. After I started reading I could't stop. I think I read everything on the site. One important thing they recommend is to print some of the guides and other info. out and bring it to your doctors for consideration. maybe if they are willing to take a look they will be open to other treatments.

Eliminate Nerve Pain Naturally:
https://www.psychologytoday.com/us/blog/complementary-medicine/200811/eliminate-nerve-pain-naturally
Alpha Lipolic Acid 300mg 2x per day
Acetyl-L-Carnitine 2000 mg per day
Inosistol 500-1000 mg per day
Vitamin B6 50-100 mg per day
Vitamin B12 500-5000 mcg per day

Take care and let us know if you find the info. informative and if you try any of the treatments.

Jump to this post

@qball2019 Thank you soooo much for the information!!! Will get on with some reading on all you posted. Was blessed today with my very first visit (virtually) with my new OD, GP…he’s a concierge doctor rather than the group practices I’ve been seeing for generations. Perfect timing with your posting as he will be treating “all” of me. He’s already strategizing about things that have already been tried with me and will work till we get to the end of what could possibly be wrong then fix if at all possible. I have renewed hope!! Will post if/when I learn anything that could contribute to helping other sufferers here.

REPLY

Anyone have experience with Licorich and neuropatay pain?

REPLY
Please login or register to post a reply.