Just Diagnosed with Small Fiber Neuropathy

Posted by boo55 @boo55, Feb 1, 2019

Hi . I am a bit scared here. Had positive skin biopsy for small fiber. What tests will the Neuro ask for to find causation? Was diagnosed prediabetic in Fall. My Dad had similar issues and eventually lost a toe. Always felt he was walking ” on fire “. My feet have similar issues. This is just one big Ick. Boo

Liked by teetee7, jasont, Mrs. H

@affliction313

I was diagnosed with periphal neuropathy about a year ago. I am not diabetic or even close, I do not drink often maybe a drink once a month, I have had the elctro stuff done everything looked fine….numerous times blood work has been done. and they can not figure out a cause. I am only 42 and very active this has really changed my lifestyle. They have basically said we don't know why this is just going to be a nuisance for the rest of your life. I was on 1800 mg of gabapentin and that did nothing now I am on 400 mg of lyrica a day which doesn't seem to help either. All they keep saying is oh your a bigger guy it may take more medicine for it to work on you. I am trying to find a better answer than that is there any sort of doctors, clinics, ect. that specialize in this sort of thing?

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@affliction313 My experience is with issues that are caused by nerve compression which can cause pain anywhere along the path of the nerve. What has really helped me is myofascial release work that my physical therapist does. Injuries, poor posture and body mechanics, and surgery cause scar tissue in the fascia that gets too tight and because that can pull the body out of ergonomic alignment, it can cause a lot of pain and reduced circulation of lymph fluid in the body (which is vital to remove waste products) so that stuff gets trapped in tissues that are not hydrated properly. This is what has recently been called the "interstitium" which is the "new" organ in the body, but this therapy to treat fascia has been around for 40 years and was developed by John Barnes who is still teaching. I have been doing this MFR for about 4 years for thoracic outlet syndrome and more recently spine surgery that was done at Mayo. During the time I was treating the TOS with MFR therapy, a disc ruptured in my neck. It took a few years to find a surgeon to help me during which time bone spurs grew and all of it compressed my spinal cord, but MFR and physical therapy helped keep my neck as stable as possible. Even though I needed surgery, I had good pliabililty of my neck muscles from MFR, so that made the surgery a bit easier because the muscles were loose enough for easier access by the surgeon, and my recovery was great. My therapist told me patients doing MFR have better recoveries and she was right.

Here are a lot of links to information and this treatment is a slow process to work through the layers, and it's different for everyone. An expert level therapist can feel the pathways of tight fascia webbing through the body and work to release it. MFR can treat and resolve problems that traditional treatments have failed to resolve. Once you understand this, there is a lot you can do at home. The patterns change as you work through the layers. There is a lot more information at this myofascialrelease.com website, but these links caught my attention.

Problems that MFR helps
https://myofascialrelease.com/about/problems-mfr-helps.aspx
Benefits of Massage-Myofascial Release Therapy on Pain, Anxiety, Quality of Sleep, Depression, and Quality of Life in Patients with Fibromyalgia
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3018656/
Therapeutic Insight: The Myofascial Release Perspective—Depression John Barnes
https://www.massagemag.com/therapeutic-insight-the-myofascial-release-perspectivedepression-8584/
Use Fascia as a Lever John Barnes
https://myofascialrelease.com/downloads/articles/FasciaAsALever.pdf
Therapeutic Insight: The Myofascial Release Perspective—Sympathetic and Parasympathetic Shock
https://www.massagemag.com/therapeutic-insight-the-myofascial-release-perspectivesympathetic-and-parasympathetic-shock-7709/
Lumbo Sacral Decompression video with John Barnes

Therapeutic Insight: The John F. Barnes' Myofascial Release Perspective—Rufus, the Cat
https://www.massagemag.com/therapeutic-insight-the-john-f-barnes-myofascial-release-perspectiverufus-the-cat-12559/
There's the Rub
https://myofascialrelease.com/downloads/articles/TheresTheRub.pdf
Therapeutic Insight: The Myofascial Release Perspective—Myofascial/Osseous Release
https://www.massagemag.com/therapeutic-insight-the-myofascial-release-perspective-myofascialosseous-release-7597/
Therapeutic Insight Articles
https://myofascialrelease.com/resources/therapeutic-insight.aspx

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My name is Elisabeth, I was declared prediabetic three years ago. i am not overweight. I cut carbs, bread, pasta etc and allow myself a pieceo of pizza everth other month. I am no longer diabetic. My mother was diabetic and my friend is diabetic and shoots herself insulin three times a day. You can do it. not difficult. After a while it becomes a habit.

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@lavieauxusa1972

My name is Elisabeth, I was declared prediabetic three years ago. i am not overweight. I cut carbs, bread, pasta etc and allow myself a pieceo of pizza everth other month. I am no longer diabetic. My mother was diabetic and my friend is diabetic and shoots herself insulin three times a day. You can do it. not difficult. After a while it becomes a habit.

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Hi, @lavieauxusa1972 – I think that your journey with prediabetes would be encouraging to share in this thread, if you feel comfortable doing so https://connect.mayoclinic.org/discussion/prediabetes-daily-recommended-sugar-and-carb-intake

@boo55 – If I understand correctly, you have a mixture of toe numbness and feeling like your feet are on fire? How are you doing?

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I just got bloodwork back that shows gluten sensitivity again.( I have had negative biopsy for celiac ) Trying to watch sugar and gluten though not ready to go gluten free . Any diet suggestions would help. Just frustrated with all this at the moment. Pain and numbness still there. Cold Midwest weather does not help. Thank you for asking how I am.

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@clairecas

I did not get help from 1st two neurologists. They never mentioned small fiber neuropathy.
You need some one who does. Maybe try asking your neuro for smallfiber pn specialist. Also try pain- management, they may know a referral for this type of neurologist.
Ask about punch skin biopsy as well.

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I'm not sure what kind of neuropathy I have, but my neurologist is sending me to a nerve- muscle specialist. I have to say I am so scared. My legs burn so bad I can hardly function..I'm thinking it doesn't matter what kind you have as nothing helps.

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@boo55

I just got bloodwork back that shows gluten sensitivity again.( I have had negative biopsy for celiac ) Trying to watch sugar and gluten though not ready to go gluten free . Any diet suggestions would help. Just frustrated with all this at the moment. Pain and numbness still there. Cold Midwest weather does not help. Thank you for asking how I am.

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If you are sensitive to gluten and have neuropathy, you must cut all gluten (and sugar) out of your diet immediately. It may take a while to see the difference, but you're putting inflammatory foods into your body. I have SFN and have completely cut out gluten, sugar (including things like wine), dairy and all processed foods. If you're not ready to make those changes, you aren't giving yourself the opportunity to get better. It's not easy, but it is worth it!

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@johnbishop

Hi @boo55, welcome to Mayo Clinic Connect. You hit the nail on the head. Small fiber neuropathy is one big ick. I know it's not much consolation but you are not alone. I have idiopathic small fiber peripheral neuropathy. The neurologist thought it might be hereditary but no relatives close and it doesn't make much difference to know for the patient (in my non medical trained opinion). I'm not sure of other tests to determine the cause of the small fiber neuropathy but here is some information that may be helpful.

This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.

You mentioned you are prediabetic. Did your Dad have diabetes? The reason I ask was my sister had diabetes and was told they may have to amputate her foot at one time. She passed away several years ago but always struggled with foot problems due to her diabetes.

@jana59 and @boo55 – I take a protocol of over the counter supplements – vitamins and minerals that help me and has helped others but may or may not help you. I found it in a closed Facebook group. The group has a website with a link to join their Facebook group – http://solutions2pnpd.com/. You can read my story and how I found the group in an earlier post on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Hope you find some answers.

John

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Hi John. thank you for all of your input. This is very scary for most of us. I thought my neuropathy was from my back and pinched nerves, but now they say surgery won't help. My feet burn so bad I can't walk very much in the day and it's awful at night. I have atropathy in my left leg also.I'm trying to work on the leg a lot, but it seems to aggravate the neuropathy when I do.
I just wanted to ask you if you did the full protocol on the solutions program. I mean everything it said to do. it seems complicated to me and I can't seem to find the answers I need. You seem to help people the most.

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@dwilkin

If you are sensitive to gluten and have neuropathy, you must cut all gluten (and sugar) out of your diet immediately. It may take a while to see the difference, but you're putting inflammatory foods into your body. I have SFN and have completely cut out gluten, sugar (including things like wine), dairy and all processed foods. If you're not ready to make those changes, you aren't giving yourself the opportunity to get better. It's not easy, but it is worth it!

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I have sfn but I don't believe I have gluten sensitivity. My neurologist recommended I greatly reduce carbs and sugar. What a difference it has made! My feet and calves still burn but not near as intensely. On special occasions, I will have a wine, dessert or pizza and then notice an increase in burning by the next morning.

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@peggyn

Hi John. thank you for all of your input. This is very scary for most of us. I thought my neuropathy was from my back and pinched nerves, but now they say surgery won't help. My feet burn so bad I can't walk very much in the day and it's awful at night. I have atropathy in my left leg also.I'm trying to work on the leg a lot, but it seems to aggravate the neuropathy when I do.
I just wanted to ask you if you did the full protocol on the solutions program. I mean everything it said to do. it seems complicated to me and I can't seem to find the answers I need. You seem to help people the most.

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Hi @peggyn, Yes, I'm still taking the full protocol of supplements on the http://solutions2pnpd.com/. It does take some time to read through all of their new member information material to understand how it helps you. You can't go specifically by the website. You have to join the closed Facebook group to read all of their material for new members. The website makes it convenient to order the different over the counter vitamins and supplements but the real help are the individual members and their experience and sharing. I don't have pain with my neuropathy so I can only say it has it has helped me slow down the progression of my neuropathy but that is subjective on my part. Most members in the closed group have been able to eliminate the pain associated with neuropathy and eventually taper off of the drugs. So basically replacing the drugs with the protocol. I still feel it's a win for me even though I still have some numbness since it doesn't appear to be getting worse.

Currently I'm looking into Myofascial Release Therapy that @jenniferhunter and @artscaping have found helpful. I just need to find some time and make a plan to do it. Here's a website that has more information:
https://myofascialrelease.com/
And…I see a new discussion has just been posted. Thanks @jenniferhunter !

Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Liked by Lisa Lucier

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@johnbishop

Hi @peggyn, Yes, I'm still taking the full protocol of supplements on the http://solutions2pnpd.com/. It does take some time to read through all of their new member information material to understand how it helps you. You can't go specifically by the website. You have to join the closed Facebook group to read all of their material for new members. The website makes it convenient to order the different over the counter vitamins and supplements but the real help are the individual members and their experience and sharing. I don't have pain with my neuropathy so I can only say it has it has helped me slow down the progression of my neuropathy but that is subjective on my part. Most members in the closed group have been able to eliminate the pain associated with neuropathy and eventually taper off of the drugs. So basically replacing the drugs with the protocol. I still feel it's a win for me even though I still have some numbness since it doesn't appear to be getting worse.

Currently I'm looking into Myofascial Release Therapy that @jenniferhunter and @artscaping have found helpful. I just need to find some time and make a plan to do it. Here's a website that has more information:
https://myofascialrelease.com/
And…I see a new discussion has just been posted. Thanks @jenniferhunter !

Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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I created a new discussion about the benefits of Myofascial release and put a lot of information there to make it easier for everyone to reference the discussion. @johnbishop @peggyn @artscaping

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@jenniferhunter

I created a new discussion about the benefits of Myofascial release and put a lot of information there to make it easier for everyone to reference the discussion. @johnbishop @peggyn @artscaping

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Thank you all… I',m just wanting to do everything I can to feel better and get rid of the pain.. I'm 72 and my husband and I were to travel in our small rv now that we are retired and I have been sick and to nothing but doctors since we purchased it.

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@boo55

I just got bloodwork back that shows gluten sensitivity again.( I have had negative biopsy for celiac ) Trying to watch sugar and gluten though not ready to go gluten free . Any diet suggestions would help. Just frustrated with all this at the moment. Pain and numbness still there. Cold Midwest weather does not help. Thank you for asking how I am.

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@boo55 Gluten free isn't that hard. if you eat basic stuff you prepare like meat and veggies and give up grains, you won't have gluten. Gluten is in the additives, the spices, sauces, thickeners, alcohol in extracts, etc. Gluten will cause inflammation in your gut, which will then cause a leaky gut, and that leads to other food allergies that will be permanent. That happened to me, and I am pretty restricted in what I can eat. Stress added to this problem. Sugar increases inflammation. So if you make these changes, you'll reduce your risk of cancer and heart disease and diabetes, and you're going to look younger. Who doesn't want that? I've been gluten free for 20 years from back when doctors didn't believe that this problem existed and wouldn't listen to me or test me with what they had at that time. You don't have to buy the gluten free junk foods. They are not great for your health anyway. There is linformation at celiac.com.

Here's a gluten free safe food list-
https://www.celiac.com/articles.html/safe-gluten-free-food-list-unsafe-foods-amp-ingredients/safe-gluten-free-food-list-safe-ingredients-r181/

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@dwilkin

If you are sensitive to gluten and have neuropathy, you must cut all gluten (and sugar) out of your diet immediately. It may take a while to see the difference, but you're putting inflammatory foods into your body. I have SFN and have completely cut out gluten, sugar (including things like wine), dairy and all processed foods. If you're not ready to make those changes, you aren't giving yourself the opportunity to get better. It's not easy, but it is worth it!

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What changes did you see in your discomfort level since your dietary change? THX

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@jenniferhunter

@boo55 Gluten free isn't that hard. if you eat basic stuff you prepare like meat and veggies and give up grains, you won't have gluten. Gluten is in the additives, the spices, sauces, thickeners, alcohol in extracts, etc. Gluten will cause inflammation in your gut, which will then cause a leaky gut, and that leads to other food allergies that will be permanent. That happened to me, and I am pretty restricted in what I can eat. Stress added to this problem. Sugar increases inflammation. So if you make these changes, you'll reduce your risk of cancer and heart disease and diabetes, and you're going to look younger. Who doesn't want that? I've been gluten free for 20 years from back when doctors didn't believe that this problem existed and wouldn't listen to me or test me with what they had at that time. You don't have to buy the gluten free junk foods. They are not great for your health anyway. There is linformation at celiac.com.

Here's a gluten free safe food list-
https://www.celiac.com/articles.html/safe-gluten-free-food-list-unsafe-foods-amp-ingredients/safe-gluten-free-food-list-safe-ingredients-r181/

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Thank you.☺

Liked by Jennifer Hunter

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My internist told me I was prediabetic a few years ago.. After eliminating all sugar, pasta, rice, bread and processed foods, my sugar was normal again.
Hope this helps!

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