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

@birdierobin

Pieface: you bet we Are headed to the pain free zone I can’t even imagine no more sickness no more tears no more pain – and no more sin! you probably feel like I do, I’ll be so happy when sinning is not our carnal nature any longer. Praise God! The fact he loves us enough to die for us is something I will never understand I almost feel like I’m not worth it but to him we are all worth it and he loves us all and he died for us and you bet he’s gonna come back for us! I know a lot of people probably think it’s silly but my faith gives me through all these hardships. I hang onto the saying ‘if he brings you to it he’ll get you through it’. And when my neuropathy starts to hurt me at a number 12 on a scale 1 to 10 (if you catch my drift) it hurts so bad I just freeze in my tracks and sometimes I start reciting the Lords prayer until it goes away and it always has, it just pray & cry. Sometimes it’s so hard to rejoice Him in our pain but it’s required of us. God bless you & take care

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@birdierobin I know what you mean about level 12 pain. My wife had an appointment with the orthopedist today, and what that means is a long day of shopping. Many of our doctors practice in Bend, an hour from home, so when we have an appointment there, it always includes Costco and 3 or 4 thrift stores and a restaurant or 2. Said all that to say that my feet are really burning and painful above my ankles. I put lidocaine cream on my feet, but I'm not sure it's going to help much. When the pain shoots past 10, it's time to turn my focus away from the pain. One way I deal with the pain is to focus on the feelings in my feet aside from the pain. I observe the tingling, which is way better than the pain. It's always interesting when I do that, what amazing power my brain has. We're created with unimaginable abilities, much of which we never access, but it's there whether or not we use it. Skin, our largest organ, has a natural ability to heal. Our eyes are essentially a small part of our brain and it exposes the brain to the environment. And the incredibly complex system of nerves – that's what we talk about a lot here – sometimes we can control them, sometimes they send us to our knees in tears and prayers.

The year I turned 50, my body started its decline. I was finally diagnosed with sleep apnea and started using a CPAP machine. That was a huge deal. Then my gall bladder function dropped to 14% and was removed. I started taking my first antidepressant. 40" of my small intestine stopped working and had to be removed. Then came bleeding ulcers. Then a mega toxic colon, had 80% of large intestine removed. Through all of that, depression and suicidal ideation and anxiety disorder and PTSD were having a heyday. I had to retire at age 55 on SS disability because I couldn't function any longer with the mental illness.

All of this is part of what I have to relive every time I have a new therapist. The first few sessions are telling my story. Telling and retelling the history of abuse and rejection and wanting to die dredges up the hurt of old wounds. So, every once in a while I take a leave of absence from Connect, while I make my way through the gunk. I'm thankful for the patience and understanding that the leaders of this group give me.

I can't help myself. I frequently get started writing and before I know it I've written way more than I intend.

Jim

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@jimhd

@birdierobin I know what you mean about level 12 pain. My wife had an appointment with the orthopedist today, and what that means is a long day of shopping. Many of our doctors practice in Bend, an hour from home, so when we have an appointment there, it always includes Costco and 3 or 4 thrift stores and a restaurant or 2. Said all that to say that my feet are really burning and painful above my ankles. I put lidocaine cream on my feet, but I'm not sure it's going to help much. When the pain shoots past 10, it's time to turn my focus away from the pain. One way I deal with the pain is to focus on the feelings in my feet aside from the pain. I observe the tingling, which is way better than the pain. It's always interesting when I do that, what amazing power my brain has. We're created with unimaginable abilities, much of which we never access, but it's there whether or not we use it. Skin, our largest organ, has a natural ability to heal. Our eyes are essentially a small part of our brain and it exposes the brain to the environment. And the incredibly complex system of nerves – that's what we talk about a lot here – sometimes we can control them, sometimes they send us to our knees in tears and prayers.

The year I turned 50, my body started its decline. I was finally diagnosed with sleep apnea and started using a CPAP machine. That was a huge deal. Then my gall bladder function dropped to 14% and was removed. I started taking my first antidepressant. 40" of my small intestine stopped working and had to be removed. Then came bleeding ulcers. Then a mega toxic colon, had 80% of large intestine removed. Through all of that, depression and suicidal ideation and anxiety disorder and PTSD were having a heyday. I had to retire at age 55 on SS disability because I couldn't function any longer with the mental illness.

All of this is part of what I have to relive every time I have a new therapist. The first few sessions are telling my story. Telling and retelling the history of abuse and rejection and wanting to die dredges up the hurt of old wounds. So, every once in a while I take a leave of absence from Connect, while I make my way through the gunk. I'm thankful for the patience and understanding that the leaders of this group give me.

I can't help myself. I frequently get started writing and before I know it I've written way more than I intend.

Jim

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Jim I think there should be a different scale for long term pain. Mine is intense but it’s short-lived you’re as intense as long lived that’s worse. I understand your frustration especially with a PSD my brother has it but he’s an alcoholic he had a major heart attack that is not listening to. Heads off for you trying to make things better I’m sorry things turned out the way they are I was able to 51 It’s not what I had planned in my life. Hang in there buddy!

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@birdierobin

Pieface: you bet we Are headed to the pain free zone I can’t even imagine no more sickness no more tears no more pain – and no more sin! you probably feel like I do, I’ll be so happy when sinning is not our carnal nature any longer. Praise God! The fact he loves us enough to die for us is something I will never understand I almost feel like I’m not worth it but to him we are all worth it and he loves us all and he died for us and you bet he’s gonna come back for us! I know a lot of people probably think it’s silly but my faith gives me through all these hardships. I hang onto the saying ‘if he brings you to it he’ll get you through it’. And when my neuropathy starts to hurt me at a number 12 on a scale 1 to 10 (if you catch my drift) it hurts so bad I just freeze in my tracks and sometimes I start reciting the Lords prayer until it goes away and it always has, it just pray & cry. Sometimes it’s so hard to rejoice Him in our pain but it’s required of us. God bless you & take care

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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.

Liked by iceblue

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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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Oh so your allowed to talk about which pain medicine to take for your pain but those of us that rely on our faith can’t talk about that? Sorry pal if you don’t like it, remove yourself. I refuse to let shallow people such as yourself tell me what I can and cannot talk about or which form of therapy works for some of us. Because it does work. You don’t deserve it for going against God but I will pray for you, and people like you cause you really need it. We are talking about neuropathy, and what works works for some of us dealing with it. Careful, your lack of compassion is showing thru your lack of faith. I will not denounce God.

Liked by lioness

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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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Ps we suffer to and what makes it bearable for us.

Liked by lioness

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@birdierobin

Oh so your allowed to talk about which pain medicine to take for your pain but those of us that rely on our faith can’t talk about that? Sorry pal if you don’t like it, remove yourself. I refuse to let shallow people such as yourself tell me what I can and cannot talk about or which form of therapy works for some of us. Because it does work. You don’t deserve it for going against God but I will pray for you, and people like you cause you really need it. We are talking about neuropathy, and what works works for some of us dealing with it. Careful, your lack of compassion is showing thru your lack of faith. I will not denounce God.

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There is something wrong with you. Sorry for you.

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@jimhd

@birdierobin I know what you mean about level 12 pain. My wife had an appointment with the orthopedist today, and what that means is a long day of shopping. Many of our doctors practice in Bend, an hour from home, so when we have an appointment there, it always includes Costco and 3 or 4 thrift stores and a restaurant or 2. Said all that to say that my feet are really burning and painful above my ankles. I put lidocaine cream on my feet, but I'm not sure it's going to help much. When the pain shoots past 10, it's time to turn my focus away from the pain. One way I deal with the pain is to focus on the feelings in my feet aside from the pain. I observe the tingling, which is way better than the pain. It's always interesting when I do that, what amazing power my brain has. We're created with unimaginable abilities, much of which we never access, but it's there whether or not we use it. Skin, our largest organ, has a natural ability to heal. Our eyes are essentially a small part of our brain and it exposes the brain to the environment. And the incredibly complex system of nerves – that's what we talk about a lot here – sometimes we can control them, sometimes they send us to our knees in tears and prayers.

The year I turned 50, my body started its decline. I was finally diagnosed with sleep apnea and started using a CPAP machine. That was a huge deal. Then my gall bladder function dropped to 14% and was removed. I started taking my first antidepressant. 40" of my small intestine stopped working and had to be removed. Then came bleeding ulcers. Then a mega toxic colon, had 80% of large intestine removed. Through all of that, depression and suicidal ideation and anxiety disorder and PTSD were having a heyday. I had to retire at age 55 on SS disability because I couldn't function any longer with the mental illness.

All of this is part of what I have to relive every time I have a new therapist. The first few sessions are telling my story. Telling and retelling the history of abuse and rejection and wanting to die dredges up the hurt of old wounds. So, every once in a while I take a leave of absence from Connect, while I make my way through the gunk. I'm thankful for the patience and understanding that the leaders of this group give me.

I can't help myself. I frequently get started writing and before I know it I've written way more than I intend.

Jim

Jump to this post

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.

Liked by lioness, rwinney

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@mstrasse1

There is something wrong with you. Sorry for you.

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

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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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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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@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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…and that is ok.

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@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!

Liked by lioness

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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

Liked by rwinney

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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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