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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.

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fala | @fala | Dec 16, 2021
In reply to @mcvmark "What can I do about my foot nueropathy..im.not diabetic?" + (show)
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What can I do about my foot nueropathy..im.not diabetic?

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My Therapist from Fox Rehab just left. Fox is the only org. that I have found that come into your house and deal with what you face everyday in your home. They are well versed in PN treatment. They focus on getting stronger with many foot exercises to lessen the pain and becoming stronger, which actually reduces the pain. I do NOT enjoy exercise, but it beats pain.

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total99 | @total99 | Dec 16, 2021
In reply to @retired123 "Since diabetes is a leading cause of neuropathy and you don't your cause just yet, I..." + (show)
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Since diabetes is a leading cause of neuropathy and you don't your cause just yet, I think it is a good precaution while you search for the cause. My routine lab work shows I do not have diabetes but that is based on glucose level standards. "One size fits all" thinking. Perhaps I have a glucose tolerance issue that does not respond to the blood test and requires a different test to reveal itself. I don't know but I have an appointment with an endocrinologist to pursue this. Another common cause can be thyroid disease. I don't know my cause but I'm looking into the most common ones first. Just my way of thinking. Can't hurt!

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Thanks. Good counsel.

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total99 | @total99 | Dec 16, 2021
In reply to @dbeshears1 "I liked Dr Karissa Gable at Duke for Neurology. I was never diagnosed with SFN, but..." + (show)
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I liked Dr Karissa Gable at Duke for Neurology. I was never diagnosed with SFN, but I imagine she treats it, I am thinking that visiting a rheumatologist might be a good next step for me, but I’m in the Charlotte area of NC now so would prefer not to travel to Duke for one.

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I appreciate your comment.

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total99 | @total99 | Dec 16, 2021
In reply to @dianecostella "There are quite a few doctors like that. My first neurologist wouldn’t treat it as well...." + (show)
Profile picture for dianecostella @dianecostella

There are quite a few doctors like that. My first neurologist wouldn’t treat it as well. I go to a neurologist who specializes in sfn. I have autonomic small fiber neuropathy so I needed someone who deals with this on a daily basis.

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Are you at liberty to provide the name of your neurologist who does treat small fiber neuropathy?

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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.

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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)
Profile picture for vbreneman @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)
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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.

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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)
Profile picture for John, Volunteer Mentor @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)
Profile picture for rivermaya34 @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)
Profile picture for rivermaya34 @rivermaya34

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

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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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