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?

@dotty

I have peripheral neuropathy in the left leg….knee to ankle for several years. It has improved considerably over time with exercise almost daily. I too am interested in helpful treatment. Most recently both hands have tingling.

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Hi @dotty, I also have peripheral neuropathy in both legs just above the ankles and in both feet. I only have numbness and no pain. I too think exercise is important as I also have polymyalgia rheumatica and have found that it's best to keep moving on a daily basis. I just try not to over do it. Do you have pain with your neuropathy?

There is another discussion you may be interested in following where members are discussing ideas for helping with their pain.

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

Liked by Leonard

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@johnbishop

Hi @dotty, I also have peripheral neuropathy in both legs just above the ankles and in both feet. I only have numbness and no pain. I too think exercise is important as I also have polymyalgia rheumatica and have found that it's best to keep moving on a daily basis. I just try not to over do it. Do you have pain with your neuropathy?

There is another discussion you may be interested in following where members are discussing ideas for helping with their pain.

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

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@johnbishop
Hi John,
Did your Neuropathy start in your feet and progress above your ankles or start where it is?
Where are you affected by
Polymyalgia Rheumatica?
Jake

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@jakedduck1

@johnbishop
Hi John,
Did your Neuropathy start in your feet and progress above your ankles or start where it is?
Where are you affected by
Polymyalgia Rheumatica?
Jake

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Hi Jake @jakedduck1,
My neuropathy started in my toes and gradually worked up to just below both knees before I finally decided to get a diagnosis by getting a referral from my primary care doc to a neurologist. That was in March of 2016. Then I found some supplements in a closed Facebook group and have been on them since Sept 2016. After about 2 months of taking the supplements it seemed like the numbness and gotten better and was a little above the ankles. I'm still taking the supplement but the numbness hasn't gotten any better but it also hasn't gotten any worse which is a win for me since the neurologist told me that it would get worse over time.

The Polymyalgia Rheumatica has been pretty much all over my body for me although when it was active it seemed mostly painful in my shoulders, arms and legs. Mostly in the joints. I've had 2 occurrences. The first one was in 2007 and lasted until mid 2010. Then it went into remission for about 6 years. The second time around it lasted a year and half and wasn't quite as bad because I knew some things that would help and i was able to keep my weight gain to a minimum. Tapering off of the prednisone was my biggest challenge.

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@johnbishop

Hi Jake @jakedduck1,
My neuropathy started in my toes and gradually worked up to just below both knees before I finally decided to get a diagnosis by getting a referral from my primary care doc to a neurologist. That was in March of 2016. Then I found some supplements in a closed Facebook group and have been on them since Sept 2016. After about 2 months of taking the supplements it seemed like the numbness and gotten better and was a little above the ankles. I'm still taking the supplement but the numbness hasn't gotten any better but it also hasn't gotten any worse which is a win for me since the neurologist told me that it would get worse over time.

The Polymyalgia Rheumatica has been pretty much all over my body for me although when it was active it seemed mostly painful in my shoulders, arms and legs. Mostly in the joints. I've had 2 occurrences. The first one was in 2007 and lasted until mid 2010. Then it went into remission for about 6 years. The second time around it lasted a year and half and wasn't quite as bad because I knew some things that would help and i was able to keep my weight gain to a minimum. Tapering off of the prednisone was my biggest challenge.

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@johnbishop
Thank you John. It’s interesting how it’s progressed and regressed.
Jake

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Hi
I have been taking Balofen 10mg x3 in 24hrs,but as of late my Achilles Tendons have been getting spasms and surprising me with a tightness in the middle of night,along with a surprise spasm in my feet,toes and legs.
The dr has switched me to Tizanadine 10mg 3x day. I do stretch my feet and ankles despite the aggravation it causes in the burning. Then again the burning never stops anyway.
Everyone who posts on this site encourages me with their willingness to keep looking for help and I may not have much to offer I sure do appreciate knowing you are out there!
I was approached in pain management to try capsian, they sedate you and wrap your feet in it,I used the cream and could not get it off fast enough! The burning was deep and awful,I don't need anything to increase that. I think it is barbaric and comes with too high of a cost to exacerbate pain.
One day we will feel no pain and run and not grow weary,we will walk and be faint.

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@notborntoburn

Hi
I have been taking Balofen 10mg x3 in 24hrs,but as of late my Achilles Tendons have been getting spasms and surprising me with a tightness in the middle of night,along with a surprise spasm in my feet,toes and legs.
The dr has switched me to Tizanadine 10mg 3x day. I do stretch my feet and ankles despite the aggravation it causes in the burning. Then again the burning never stops anyway.
Everyone who posts on this site encourages me with their willingness to keep looking for help and I may not have much to offer I sure do appreciate knowing you are out there!
I was approached in pain management to try capsian, they sedate you and wrap your feet in it,I used the cream and could not get it off fast enough! The burning was deep and awful,I don't need anything to increase that. I think it is barbaric and comes with too high of a cost to exacerbate pain.
One day we will feel no pain and run and not grow weary,we will walk and be faint.

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Hello, @notborntoburn – since you mentioned having some issues with increased muscle spasms and tightening, I've moved your post here to this discussion, "Living with Neuropathy – Welcome to the Group," so more members could interact with you about this symptom, like @burningfeetinphoenix @jeffrapp @artscaping @dotty @ashley302.

You also mentioned that you had some therapy with capsaicin. Here is some information on it which may be of interest https://www.mayoclinic.org/drugs-supplements/capsaicin-topical-route/description/drg-20062561. Sounds like this treatment didn't work well for you?

Just wanted to clarify, notborntoburn, that you are thinking that these muscle issues are related to the neuropathy itself, rather than being side effects of any of the medications you are taking?

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@lisalucier

Hello, @notborntoburn – since you mentioned having some issues with increased muscle spasms and tightening, I've moved your post here to this discussion, "Living with Neuropathy – Welcome to the Group," so more members could interact with you about this symptom, like @burningfeetinphoenix @jeffrapp @artscaping @dotty @ashley302.

You also mentioned that you had some therapy with capsaicin. Here is some information on it which may be of interest https://www.mayoclinic.org/drugs-supplements/capsaicin-topical-route/description/drg-20062561. Sounds like this treatment didn't work well for you?

Just wanted to clarify, notborntoburn, that you are thinking that these muscle issues are related to the neuropathy itself, rather than being side effects of any of the medications you are taking?

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Thanks,
I am not on any meds at the moment,except blood pressure. Drs offer no help Ichanged neuro dr but appt is a month away.
I am tired and keep looking for some hope

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@donnalujan11

Yes thank you my pain started back in 2011 when I broke my right leg in three different places I woke up one morning and jumped out of bed because I thought I was late for work and my leg went out from under me and did a twirl and broke it in three places and I didn’t get peripheral neuropathy until about two years later after that but now it’s full force in the right leg and has moved to the left leg I’ve done exercise I’ve tried all the cybalta, lyrics, neurontin, savella, change the muscle relax sent up several probably four times with different muscle relax sense but they always seem to go back to the Flexeril I don’t take hydrocodone I don’t like that prescription I do take tramadol but I only try to take no more than two a day. I’m not diabetic with Paeripheal neuropathy most people are diabetic. I know most of the physicians in town from working with them but I do have a pain specialist and neurologist rheumatoid arthritis an internist I feel like I’m leaving one of my physicians out but my brain is not working right now I would appreciate any thoughts any recommendations and suggestions thank you all

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@donnalujan11, Good evening. I was checking on the respondents in this category and came across your name. When last you posted you were in considerable pain from prior injuries and peripheral neuropathy. I think you said you were going to figure it out but your brain wasn't cooperating at the time. How do things look today? Have you found medication solutions?

I'm just wondering, have you paid any attention to your fascia? Could it be restricted at this point? I started this journey with CMPS, chronic myofascial pain syndrome. Only after discovering the benefits of MFR treatments have I been able to conquer that debilitating issue.

If the truth is to be known, it does appear that you have tried many of the standard medications for your diagnosis. I would like to throw out another one and that is medical cannabis. Would you have an interest in pursuing that option? My whole life has been turned inside out and upside down with relief and joy since I was able to put together a regimen that works for me.

Please touch base…….and may you be free of suffering. Chris

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@ashley302

I'm 27 years old and I've been dealing with SFN for over a year now. Had the biopsy to confirm and tried various antidepressants. Currently I decided to stop taking medication because I don't want to be on anything. I'm so young and don't understand why this has happened as I'm sure many of you feel. I've always been healthy and don't have diabetes or any known cause. It's so frustrating and every day is a battle to be positive. Some days i'm depressed and others I'm mad. At this point i don't know if I should even see anymore doctors because it's the same drill as in they can't do anything or don't know the cause.

For natural remedies what has worked for relief?
Also have your symptoms of SFN gotten worse?

Acupuncture – don't think it's helped at all.
I've been trying drinking celery juice every day, giving that more time.
Eat lots of fruits and veggies through out the day.

Thank you for your support and tips.

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Good evening @ashley302, I haven't seen an update for you in your search for information about and treatment for SFN. I think you asked about natural remedies. Have you discovered any self-help treatments? At the top of my list are Yoga, Mindful Meditation and Myofascial Release (MFR ). The yoga and meditation are must-dos for connecting the body, mind, and spirit. I am happy to share more with you if you would find it worthwhile.

You are sooooo young. Perhaps there will soon be a medication that encourages nerves to regenerate. How do you think your small fiber nerves were injured?

You have made a decision to stop taking medication. How are you doing without medication? I understand your desire to be unencumbered with side effects and the possibility of dependency. I reached that point early in my SFN journey. That was when I engaged a "coach" to help me find the right natural remedy and that is medical cannabis. Have you explored that option? I am now four years down the cannabis road and have found a regimen that works best for me.

I am concerned about your anger and depression. How do you feel as you read this? How can I help? I am here for you.
May you have relief from pain. Chris

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