1. < Neuropathy

Small Fiber Neuropathy: What helps?

Posted by lisadog33 @lisadog33, Mar 28, 2017

I have been diagnosed with Small Fiber Neuropathy. My problem is this. Since before they diagnosed me, I was having other symptoms that I thought were not related including loss of appetite/weight loss, bladder control, bowel control, problem with eyesight at times, tremors, sleep issues among some other things. I was told by my Neurologist that those things are not related to small fiber neuropathy but when I look it up, it says it can affect your autonomic nervous system. What is the truth. I am having a heck of a time with bladder and bowel issues as well as either sleeping through the alarm or not sleeping at all. I hope someone can shed some light on this for me. Thank you.

Interested in more discussions like this? Go to the Neuropathy Support Group.

vbreneman | @vbreneman | Dec 16, 2021

I went to a neurologist at UT. He was very nice, and took some blood tests, but he told me that neuropathy can not be cured. I don't want to believe that, I feel that there has to be a cure.
I have neuropathy due to chemo treatments. My feet are not numb, but I have constant tingling in my feet. It never goes away! Feels as though I am walking on small sand or small peebles.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 16, 2021
In reply to @vbreneman "I went to a neurologist at UT. He was very nice, and took some blood tests,..." + (show)
@vbreneman

I went to a neurologist at UT. He was very nice, and took some blood tests, but he told me that neuropathy can not be cured. I don't want to believe that, I feel that there has to be a cure.
I have neuropathy due to chemo treatments. My feet are not numb, but I have constant tingling in my feet. It never goes away! Feels as though I am walking on small sand or small peebles.

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Welcome @vbreneman, I don't think any of us want to believe it can't be cured but then reality sets in. We may not be able to have a cure but we can hopefully find something that helps to treat the symptoms. For me, preferrably without drugs. You might find the following discussions helpful:

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

Have you finished with the chemo treatments?

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notgivingup17 | @notgivingup17 | Dec 17, 2021
In reply to @johnbishop "Hi @notgivingup17, I'm sorry to hear that the doctor's seem to be giving up on helping..." + (show)
@johnbishop

Hi @notgivingup17, I'm sorry to hear that the doctor's seem to be giving up on helping you. I've been on the Protocol 525 since 2016 when we ordered the individual supplements before it became the 525. The reason it's called the 525 is that we used to take 20+ pills/capsules daily and it's now 5 in the morning, 2 at noon, 5 in the evening for 525. You can read my neuropathy journey here - https://connect.mayoclinic.org/comment/310341/

From your description it sounds like nerve compression in your spine is possibly causing some of your symptoms. There is a discussion started by @jenniferhunter which you might find helpful - Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

There are several discussions on LDN that you might want to read through:
-- Low Dose Naltrexone and Neuropathy: https://connect.mayoclinic.org/discussion/low-dose-naltrexone-and-neuropathy/
-- Anyone with experience using Low Dose Naltrexone?: https://connect.mayoclinic.org/discussion/anyone-with-experience-using-low-dose-naltrexone/
-- Low-Dose Naltrexone for Chronic Pain: https://connect.mayoclinic.org/discussion/low-dose-naltrexone-for-chronic-pain/

Sometimes it can be overwhelming if you focus on the pain and what tomorrow will be like. What helps me is taking each day one at a time and focusing on positive thoughts to keep me in a good frame of mind. If you have a little time, here is a website I've found really helpful - https://www.resilientoption.com/resilience-bytes

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Thank you so much for replying to my testimony. I'm so thankful to know I'm not alone in this journey but I wouldn't wish this on anyone. My surgeon went over my MRI and told me there are no compression on my spine. It's possible I have some in my neck. I was hit from behind many years ago and had a whiplash but didn't get it check out. My surgeon said I have some issue in my neck but we only need to keep an eye on it and do not extend my neck back for a long period of time. I don't want anymore surgery since the last one didn't help me much, I have a feeling I was misdiagnose even though I did see the herniation. He's a very knowledgeable surgeon but I don't have a lot of faith in surgery anymore. I had a feeling the herniated disc wasn't all of my problems because of the way the pain started.
I really appreciate you information, wisdom and links to other websites. For now I'm going to see if this LDN help because I'm despite for relief.

REPLY
notgivingup17 | @notgivingup17 | Dec 17, 2021
In reply to @johnbishop "Hi @notgivingup17, I'm sorry to hear that the doctor's seem to be giving up on helping..." + (show)
@johnbishop

Hi @notgivingup17, I'm sorry to hear that the doctor's seem to be giving up on helping you. I've been on the Protocol 525 since 2016 when we ordered the individual supplements before it became the 525. The reason it's called the 525 is that we used to take 20+ pills/capsules daily and it's now 5 in the morning, 2 at noon, 5 in the evening for 525. You can read my neuropathy journey here - https://connect.mayoclinic.org/comment/310341/

From your description it sounds like nerve compression in your spine is possibly causing some of your symptoms. There is a discussion started by @jenniferhunter which you might find helpful - Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

There are several discussions on LDN that you might want to read through:
-- Low Dose Naltrexone and Neuropathy: https://connect.mayoclinic.org/discussion/low-dose-naltrexone-and-neuropathy/
-- Anyone with experience using Low Dose Naltrexone?: https://connect.mayoclinic.org/discussion/anyone-with-experience-using-low-dose-naltrexone/
-- Low-Dose Naltrexone for Chronic Pain: https://connect.mayoclinic.org/discussion/low-dose-naltrexone-for-chronic-pain/

Sometimes it can be overwhelming if you focus on the pain and what tomorrow will be like. What helps me is taking each day one at a time and focusing on positive thoughts to keep me in a good frame of mind. If you have a little time, here is a website I've found really helpful - https://www.resilientoption.com/resilience-bytes

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johnbishop, I also want to thank you for the information about Myofascial Release, I will most definitely try this! God bless you and have a happy holiday : )

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notgivingup17 | @notgivingup17 | Dec 17, 2021
In reply to @rivermaya34 "@simina1234 I'm not familiar with what that is... can you elaborate? Gracias" + (show)
@rivermaya34

@simina1234 I'm not familiar with what that is... can you elaborate? Gracias

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I just ordered a infrared light from QVC I haven't received it yet but when I do I'll let you know my experience.

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simina1234 | @simina1234 | Dec 17, 2021
In reply to @rivermaya34 "@simina1234 I'm not familiar with what that is... can you elaborate? Gracias" + (show)
@rivermaya34

@simina1234 I'm not familiar with what that is... can you elaborate? Gracias

Jump to this post

Red light therapy ( low level laser therapy ) - have a positive impact on nerve regeneration ( according to studies ). They improve blood circulation .
Home units are available for sale .

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2 replies
simina1234 | @simina1234 | Dec 17, 2021
In reply to @johnbishop "Welcome @simina1234, When I was first diagnosed with small fiber PN I looked into the infrared..." + (show)
@johnbishop

Welcome @simina1234, When I was first diagnosed with small fiber PN I looked into the infrared therapy but was concerned about the cost of the treatments with no end in sight or guarantees so decided against it. I also saw something similar I thought might be helpful but have not tried it. There are a couple of discussions you might find helpful to learn what others have found helpful.

-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Infrared Sauna Treatment for PN: https://connect.mayoclinic.org/discussion/infrared-sauna-treatment-for-pn/
-- Laser Therapy for Neuropathy: https://connect.mayoclinic.org/discussion/neuropathy-1/

@juanito and @ecc79 may be able to share their experience with infrared therapy with you.

Are you able to share a little more about your symptoms and any treatments you started or that have been recommended by your doctor?

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Thank you John ! I have read you are in protocol 525. I have also read and thought about it .
My concern is that I weigh only 100 lbs and cannot take more than 4-5 pills a day ( heartburn, stomach ache …) . I see the protocol had 12 pills a day.

Do you get side effects from the protocol ?

Do you take all the vitamins every month ? What happens if you stop for a few weeks/ months ?

Thanks !

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 17, 2021
In reply to @simina1234 "Thank you John ! I have read you are in protocol 525. I have also read..." + (show)
@simina1234

Thank you John ! I have read you are in protocol 525. I have also read and thought about it .
My concern is that I weigh only 100 lbs and cannot take more than 4-5 pills a day ( heartburn, stomach ache …) . I see the protocol had 12 pills a day.

Do you get side effects from the protocol ?

Do you take all the vitamins every month ? What happens if you stop for a few weeks/ months ?

Thanks !

Jump to this post

I personally have not had any side effects from taking the protocol. They do have a "ramp up" version where you gradually increase the dosage of Na-RALA since some folks have digestive problems if they start with the full 1200 mg daily but that's the only issue I've heard others complain about. Also, some people take some adjusting to swallow the organic hemp seed oil. I started out mixing it in a morning smoothie but didn't like it making the smoothie taste bad so have gotten used to just swallowing the 1.5 oz every morning followed by a glass of water. I've been taking it daily since Sept 2016 which was a few years before it became the 525 and was more pills. I have missed a few days over the years but it was when I had a fasting blood lab where I couldn't take supplements before or when I ran out for a day or so before my reorder came. The lapses have not had much of an impact on me because I don't have the pain.

I have been following a clinical trial for a company called WinSanTor which is for WinSanTor’s lead compound, WST-057 a topical containing pirenzepene – https://winsantor.com/pipeline/. Interesting during my research I came across an article that is about one of my conditions I was trying to associate with metabolic syndrome. Much to my surprise I found the following article on their website:

Low-Carb Diets for Peripheral Neuropathy: https://winsantor.com/low-carb-diets-for-peripheral-neuropathy/

We also have a discussion group on Connect for low carb healthy fat (LCHF) - LCHF Living & Intermittent Fasting: https://connect.mayoclinic.org/group/lchf-living-intermittent-fasting/.

REPLY
rivermaya34 | @rivermaya34 | Dec 17, 2021
In reply to @simina1234 "Red light therapy ( low level laser therapy ) - have a positive impact on nerve..." + (show)
@simina1234

Red light therapy ( low level laser therapy ) - have a positive impact on nerve regeneration ( according to studies ). They improve blood circulation .
Home units are available for sale .

Jump to this post

Thank you kindly @simina1234 !! I am very interested and will look into it! Glad you are getting relief! 🙂 @notgivingup17 I wish you all the best of luck!!

REPLY
1 reply
pogo | @pogo | Dec 18, 2021
In reply to @rivermaya34 "Thank you kindly @simina1234 !! I am very interested and will look into it! Glad you..." + (show)
@rivermaya34

Thank you kindly @simina1234 !! I am very interested and will look into it! Glad you are getting relief! 🙂 @notgivingup17 I wish you all the best of luck!!

Jump to this post

have PN in my feet. I am not diabetic but believe my problem came from weight loss surgery I had in my 20's. I am 73 now. I did a series of treatments using infrared light, vibration & tens unit with pads on feet & calves. However the key was the diet very low carb & low sugar. I had a definite improvement. I have slipped from the diet and need to go back on it. ( another benefit I lost 50 pounds.The infrared light can be purchased thru Amazon the tens unit I would ask your doctor for a script to get a medical grade one

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