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

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

@birdierobin

Who cares what you think, nothing wrong with me! Look in the mirror

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Not worth it folks. Private messaging can help or avoid a bit of public disputing.

I respect each persons perspectives and hope today can be a positive day for all.

Be well-
Rachel

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@swartzki

Jim and Jane, I think this is the place to unload. So don' t worry about long posts.Husbands and wives don't know what this feels like even if they are loving and supportive. Mine is not. Mstrasse, I understand the frustration of looking for answers and finding none. As far as the posts go, if I don't feel like the discussion is helpful or I can't add to it, I skip it. I will add that my faith is the only reason I haven't taken my own life . That's why I appreciate people like Jim, whose been so forthcoming about his battle with depression. Robin, thanks for sharing about your hair. The hair loss is so isolating for me. I'm waiting for my insurance to approve IVIG.

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My Faith keeps me going. Theres been discussions on shoes, diets, opioids opioids, addictions, infusions, injunctions, massages - whatever works & what doesn’t work. What works for one doesn’t for another. No judgements! So I ruffled feathers talking about Faith & God with others that are doing the same. So go figure. who cares! On another note, hair loss is a serious side affect of some medications & some illnesses & it’s a hard change in some people’s life’s. Let me know how your treatment choices are going Swartz ok? We are all looking for answers to some painful ailments - neuropathy!

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@rwinney

Not worth it folks. Private messaging can help or avoid a bit of public disputing.

I respect each persons perspectives and hope today can be a positive day for all.

Be well-
Rachel

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Well said Rachel, well said

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@lisalucier

Hi, @fredjan2016 - it sounds like you've been through significant pain with your neuropathy. What is the name of the new treatment you will be undergoing with the injections and electronic device?

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Hello Lisa, The injection is a "bilateral posttibial nerve block". The doctor said the electronic device is very similar to a spinal cord stimulator except it is installed above the foot on each leg.

I apologize for the late reply. I had a difficult time getting my neuropathy pain under control yesterday. Like most of us I have low pain days and high pain days.

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@johnbishop

Hello @fredjan2016, I would like to add my thank you for sharing your story along with the other members and also welcome you to Connect. I also have small fiber peripheral neuropathy but I only have the numbness and no pain. I shared what has helped me in an earlier post on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985 It has also helped others with neuropathy pain.

Is this the electronic device your pain management doctor was suggesting?
https://rxfunction.com/our-product/

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John, I checked out that link and I don't believe that is the device. It was my understanding that they would implant the device.

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***Important Reminder from the Community Director***
Mayo Clinic Connect's Community Guidelines offer 10 short rules of conduct that help keep the Mayo Clinic Connect community safe, supportive, inclusive, and respectful. https://connect.mayoclinic.org/page/about-connect/tab/community-guidelines/

I'd like to draw your attention specifically to guideline 2 regarding respect and being inclusive.
2. Remain respectful at all times.
– Exercise tolerance and respect toward other participants whose views may differ from your own. Disagreements are fine, but mutual respect is a must.
– Be inclusive. Not everyone shares the same religious or political beliefs. Don't impose your beliefs on others.

For some faith is integral to health and healing; for others this may not be the case. You may wish to engage in a deeper conversation about faith, religion and health, in this discussion by clicking this link https://connect.mayoclinic.org/discussion/how-spirituality-can-help-stress/

Above all, remain respectful. Members here have kept the Connect free of the disaccord and vitriol that is so prevalent on other social media. I would ask that we work to keep it that way. Yes, we are allowed to disagree. But embrace that I'm different LIKE you.

If you have any concerns, please contact me using this form https://connect.mayoclinic.org/contact-a-community-moderator/

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@mstrasse1

please take your god and worship somewhere else. This is a place where people suffering from neuropathy pain daily.
we expect to hear about others suffering the same pain and what they have tried to make their lives bearable.

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@mstrasse1

Neuropathy in all of its variations is a truly confusing illness to treat. That's why we participate in conversations about it here, hoping to learn from others what has or hasn't helped.

Faith is a key component of the treatment for any number of things. There are also many faith persuasions, any of which may well improve the quality of life for those who choose that particular flavor. @birdierobin and others share a common faith which is central to their approach to their pain. I believe that if you were to read more of what those who offend you have said, they would fit right in to your expectations of this conversation, namely that " We expect to hear about others suffering the same pain and what they have tried to make their lives bearable. " In fact, that's precisely what these men and women are doing.

Jim

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@darlingtondoll

Yes Jim, I found myself doing that too. I am a very private person, but I have unloaded here much more than I ever intended to do. My present husband doesn’t know what you all know about me here.

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@darlingtondoll

I think that many of us here have spoken about our inner struggles on a deeper level than we might do elsewhere. I feel that a primary reason for that is that we feel safe here. I know that's important to me.

Jim

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@fredjan2016

Hello Lisa, The injection is a "bilateral posttibial nerve block". The doctor said the electronic device is very similar to a spinal cord stimulator except it is installed above the foot on each leg.

I apologize for the late reply. I had a difficult time getting my neuropathy pain under control yesterday. Like most of us I have low pain days and high pain days.

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Hi, @fredjan2016 - my searches for the bilateral posttibial nerve block turned up all information for medical professionals, but this information on a .org for emergency medicine physicians seemed the most useful for laypeople of all of them https://www.acep.org/sonoguide/posterior_tibial_nerve_block.html

When will your treatment like this start, fredjan2016? How are you feeling about it?

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@jimhd

@mstrasse1

Neuropathy in all of its variations is a truly confusing illness to treat. That's why we participate in conversations about it here, hoping to learn from others what has or hasn't helped.

Faith is a key component of the treatment for any number of things. There are also many faith persuasions, any of which may well improve the quality of life for those who choose that particular flavor. @birdierobin and others share a common faith which is central to their approach to their pain. I believe that if you were to read more of what those who offend you have said, they would fit right in to your expectations of this conversation, namely that " We expect to hear about others suffering the same pain and what they have tried to make their lives bearable. " In fact, that's precisely what these men and women are doing.

Jim

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Well said Jim. I honestly can say that I have come to count on the words of others in the forum, you being one. Thank you. 🌞
Rachel

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