1. < Neuropathy

Recently diagnosed with Small Fiber Neuropathy - so many questions

Posted by Maveric09 @maveric09, Feb 4, 2022

Hello, I am a 44-year male just diagnosed with Small Fiber Neuropathy (SFN). In addition to the numbness and tingling in my feet and hands, I started experiencing facial flushing, chest pain, orthostatic hypotension, and digestive issues last year. It took me nearly a year and more tests than I can count to finally arrive at a diagnosis.

I have so many questions, but the neurologist that diagnosed me is so hard to get a hold of. In fact, I haven't even met with her yet - she just called me to tell me the diagnosis and prescribed me Lyrica. To be fair, she's an expert on this condition, but there's one of her and so many of us.

Admittedly, I am scared. I hope I may share some of my questions with this group. Thank you in advance for your support. My questions are:

1.) Is there an association or definitive resource (like the American Heart Association) I can research?

2.) What are some of the health care facilities that do research on this condition? Would it help to come to the Mayo Clinic to speak with experts on this? It feels no healthcare practitioner knows what I am talking about when I mention SFN. I can't tell you how many doctors told me I had anxiety and suggested SSRIs.

3.) Will this get worse? Is it fatal? What else can I do to treat/manage symptoms? Are there alternative forms of treatment? The side effects of Lyrica seem pretty extensive, and the 'significant weight gain' seems like it would be something I would want to avoid given all the things I am experiencing.

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

Mentor
Chris Trout, Volunteer Mentor | @artscaping | Feb 19, 2022
In reply to @julkun "I take 2400 gabapentin and it doesn't do anything really. And I tried other drugs too..." + (show)
@julkun

I take 2400 gabapentin and it doesn't do anything really. And I tried other drugs too and many other therapies. My type 2 diabetes is under control and my only real concern now is the daily pain when my nerves in my feet flare up. It is torture living like this. My theory is that the pain is in our brain or processed by our brain. How do we stop the pathway from our feet to our brain? Creams and all that on the skin won't work. Any ideas?

Jump to this post

Let me respond to all of you........@carol228, @julkun, @maveric09. It is a little difficult to follow the posts at this point.

For you who have had the skin biopsy then you know that it measures the strength of the nerves in one cell. My last and only biopsy was four years ago or so and it revealed a severe absence of nerve cells at .09% of what is
expected.

At that time I was beginning to have pain in my abdomen....sort of like you might imagine from one of those pretty glass fireplaces with flames. My legs were also quite upset about not being able to transmit information correctly and so I dealt with the pain. I also began to have some distress in my rib cage in certain areas. To this day, I have reflective pain in certain ribs when I go for my MFR (myofascial release treatment).

The progression of my neuropathy soon led to numb and tingly feet with soles that felt like leather and toes that were freezing most of the time. My toes even lock themselves on top of each other and I have to undo them. I also have two foot treatments a week so that I can continue driving.

Now for the gabapentin. I was unable to take gabapentin in the morning but needed it. So....we moved a dosage of 1200 mg to evening. That ensured that I might sleep better. I have since reduced the dosage to 600 mg by exchanging the other 600 mg for medical cannabis. I can assure you that if I forget to take the gabapentin, I will miss it at about 2 a.m. when the discomfort wakes me up.

At this point, my symptoms of neuropathic itching, pain, and extreme cold are under the best control I can make happen with cannabis tinctures, topicals, and the remaining gabapentin. So....creams can help.

The other medication that I have just increased for the second time is duloxetine. It controls my anxiety very well at 120 mg. every morning. Anxiety creates pain, which creates more anxiety and then more pain, etc. etc. I have just been on the increased dosage for two weeks and I am able to tell the difference. I just handled some processing errors with Apple and AMEX which took 4 days, multiple phone calls, and 2 tanks of gas going back and forth to the Apple store. All because of a typo......someone entered my name wrong.

So....please do not give up. The goal must be to improve your quality of life. There is no cure and the symptoms can be different from person to person and from day to day. Let's stay positive and share with others on Connect. Try some mindfulness meditation........ which is an amazing way to handle pain and is not difficult when you practice every day.

Where will you start? What can you share?
May you all be free of suffering and the causes of suffering.
Chris

REPLY
3 replies
greenacres | @greenacres | Feb 20, 2022
In reply to @artscaping "Let me respond to all of you........@carol228, @julkun, @maveric09. It is a little difficult to follow..." + (show)
@artscaping

Let me respond to all of you........@carol228, @julkun, @maveric09. It is a little difficult to follow the posts at this point.

For you who have had the skin biopsy then you know that it measures the strength of the nerves in one cell. My last and only biopsy was four years ago or so and it revealed a severe absence of nerve cells at .09% of what is
expected.

At that time I was beginning to have pain in my abdomen....sort of like you might imagine from one of those pretty glass fireplaces with flames. My legs were also quite upset about not being able to transmit information correctly and so I dealt with the pain. I also began to have some distress in my rib cage in certain areas. To this day, I have reflective pain in certain ribs when I go for my MFR (myofascial release treatment).

The progression of my neuropathy soon led to numb and tingly feet with soles that felt like leather and toes that were freezing most of the time. My toes even lock themselves on top of each other and I have to undo them. I also have two foot treatments a week so that I can continue driving.

Now for the gabapentin. I was unable to take gabapentin in the morning but needed it. So....we moved a dosage of 1200 mg to evening. That ensured that I might sleep better. I have since reduced the dosage to 600 mg by exchanging the other 600 mg for medical cannabis. I can assure you that if I forget to take the gabapentin, I will miss it at about 2 a.m. when the discomfort wakes me up.

At this point, my symptoms of neuropathic itching, pain, and extreme cold are under the best control I can make happen with cannabis tinctures, topicals, and the remaining gabapentin. So....creams can help.

The other medication that I have just increased for the second time is duloxetine. It controls my anxiety very well at 120 mg. every morning. Anxiety creates pain, which creates more anxiety and then more pain, etc. etc. I have just been on the increased dosage for two weeks and I am able to tell the difference. I just handled some processing errors with Apple and AMEX which took 4 days, multiple phone calls, and 2 tanks of gas going back and forth to the Apple store. All because of a typo......someone entered my name wrong.

So....please do not give up. The goal must be to improve your quality of life. There is no cure and the symptoms can be different from person to person and from day to day. Let's stay positive and share with others on Connect. Try some mindfulness meditation........ which is an amazing way to handle pain and is not difficult when you practice every day.

Where will you start? What can you share?
May you all be free of suffering and the causes of suffering.
Chris

Jump to this post

Chris, Thank you for your courage and commitment. I find your posts inspiring.

REPLY
1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Feb 20, 2022
In reply to @greenacres "Chris, Thank you for your courage and commitment. I find your posts inspiring." + (show)
@greenacres

Chris, Thank you for your courage and commitment. I find your posts inspiring.

Jump to this post

Hi there…..glad to see you again. How is your husband doing? Spring is on its way and I hope you are ready to enjoy the new season. My world is icy and white right now…..so I am ready for green and lots of sunshine. How about you?
Chris

REPLY
1 reply
pacer3702 | @pacer3702 | Feb 20, 2022
In reply to @artscaping "Let me respond to all of you........@carol228, @julkun, @maveric09. It is a little difficult to follow..." + (show)
@artscaping

Let me respond to all of you........@carol228, @julkun, @maveric09. It is a little difficult to follow the posts at this point.

For you who have had the skin biopsy then you know that it measures the strength of the nerves in one cell. My last and only biopsy was four years ago or so and it revealed a severe absence of nerve cells at .09% of what is
expected.

At that time I was beginning to have pain in my abdomen....sort of like you might imagine from one of those pretty glass fireplaces with flames. My legs were also quite upset about not being able to transmit information correctly and so I dealt with the pain. I also began to have some distress in my rib cage in certain areas. To this day, I have reflective pain in certain ribs when I go for my MFR (myofascial release treatment).

The progression of my neuropathy soon led to numb and tingly feet with soles that felt like leather and toes that were freezing most of the time. My toes even lock themselves on top of each other and I have to undo them. I also have two foot treatments a week so that I can continue driving.

Now for the gabapentin. I was unable to take gabapentin in the morning but needed it. So....we moved a dosage of 1200 mg to evening. That ensured that I might sleep better. I have since reduced the dosage to 600 mg by exchanging the other 600 mg for medical cannabis. I can assure you that if I forget to take the gabapentin, I will miss it at about 2 a.m. when the discomfort wakes me up.

At this point, my symptoms of neuropathic itching, pain, and extreme cold are under the best control I can make happen with cannabis tinctures, topicals, and the remaining gabapentin. So....creams can help.

The other medication that I have just increased for the second time is duloxetine. It controls my anxiety very well at 120 mg. every morning. Anxiety creates pain, which creates more anxiety and then more pain, etc. etc. I have just been on the increased dosage for two weeks and I am able to tell the difference. I just handled some processing errors with Apple and AMEX which took 4 days, multiple phone calls, and 2 tanks of gas going back and forth to the Apple store. All because of a typo......someone entered my name wrong.

So....please do not give up. The goal must be to improve your quality of life. There is no cure and the symptoms can be different from person to person and from day to day. Let's stay positive and share with others on Connect. Try some mindfulness meditation........ which is an amazing way to handle pain and is not difficult when you practice every day.

Where will you start? What can you share?
May you all be free of suffering and the causes of suffering.
Chris

Jump to this post

Thank you for this information. What type of foot treatment helps you with driving?

REPLY
1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Feb 20, 2022
In reply to @pacer3702 "Thank you for this information. What type of foot treatment helps you with driving?" + (show)
@pacer3702

Thank you for this information. What type of foot treatment helps you with driving?

Jump to this post

Good afternoon @pacer3702. On Mondays and Thursdays I have MFR (myofascial release therapy). During the session one of the therapists uses MFR on my feet. After the initial pressure, they use their knuckles to release the constricted tissue on the bottom of my feet. This brings back the sensation that they are alive and sensitive to objects like the gas petal and the brake.

I feel an obligation to be a safe driver and to not place myself or anyone else at risk. Then I do the "Legs up the Wall" yoga pose every day for a few minutes as part of my at home neuropathy exercises.

Have you been diagnosed with small fiber neuropathy or some other type of loss of feeling in your feet?

May you be content and at peace.
Chris

REPLY
3 replies
carol228 | @carol228 | Feb 20, 2022
In reply to @artscaping "Let me respond to all of you........@carol228, @julkun, @maveric09. It is a little difficult to follow..." + (show)
@artscaping

Let me respond to all of you........@carol228, @julkun, @maveric09. It is a little difficult to follow the posts at this point.

For you who have had the skin biopsy then you know that it measures the strength of the nerves in one cell. My last and only biopsy was four years ago or so and it revealed a severe absence of nerve cells at .09% of what is
expected.

At that time I was beginning to have pain in my abdomen....sort of like you might imagine from one of those pretty glass fireplaces with flames. My legs were also quite upset about not being able to transmit information correctly and so I dealt with the pain. I also began to have some distress in my rib cage in certain areas. To this day, I have reflective pain in certain ribs when I go for my MFR (myofascial release treatment).

The progression of my neuropathy soon led to numb and tingly feet with soles that felt like leather and toes that were freezing most of the time. My toes even lock themselves on top of each other and I have to undo them. I also have two foot treatments a week so that I can continue driving.

Now for the gabapentin. I was unable to take gabapentin in the morning but needed it. So....we moved a dosage of 1200 mg to evening. That ensured that I might sleep better. I have since reduced the dosage to 600 mg by exchanging the other 600 mg for medical cannabis. I can assure you that if I forget to take the gabapentin, I will miss it at about 2 a.m. when the discomfort wakes me up.

At this point, my symptoms of neuropathic itching, pain, and extreme cold are under the best control I can make happen with cannabis tinctures, topicals, and the remaining gabapentin. So....creams can help.

The other medication that I have just increased for the second time is duloxetine. It controls my anxiety very well at 120 mg. every morning. Anxiety creates pain, which creates more anxiety and then more pain, etc. etc. I have just been on the increased dosage for two weeks and I am able to tell the difference. I just handled some processing errors with Apple and AMEX which took 4 days, multiple phone calls, and 2 tanks of gas going back and forth to the Apple store. All because of a typo......someone entered my name wrong.

So....please do not give up. The goal must be to improve your quality of life. There is no cure and the symptoms can be different from person to person and from day to day. Let's stay positive and share with others on Connect. Try some mindfulness meditation........ which is an amazing way to handle pain and is not difficult when you practice every day.

Where will you start? What can you share?
May you all be free of suffering and the causes of suffering.
Chris

Jump to this post

Thank you Chris for your information. My neurologist and I have been more focused on my migraines lately.
But my neuropathy has really been bothering me . I think because of our cold . ( which is not to be compared to yours ) we barely have a freeze. But, I cannot tolerate cold at all.
I will ask my neurologist to see if Duloxetine will help me. Thanks and be well.

REPLY
1 reply
julkun | @julkun | Feb 20, 2022

Thanks Chris and the others in the chain. I don't have the luxury of thinking positive when I am in a severe pain period. I want to take some sort of action. Creams, lotions, vibrating devices, soaking my feet, exercising, stretching, extra-strength Tylenol, ice pack, heating pad, different shoes, etc. Nothing really works. I know why!!! The inflamed damaged nerves are sending pain signals to the brain. None of the above are attacking the source. This isn't eczema where you rub a cream on and it starts to itch less and eventually gets better. I know I will never be cured but I need to find out if there is a way to stop or really reduce the pain signal from the inflamed nerve from going to my brain. (Note: During covid the neuropathy pain was reduced by a lot. Maybe my pain receptors were too busy with the Covid pains, just a thought). Lastly, I am sick of reading about the NEW pill that stops neuropathy. They are all greedy liars trying to exploit us. (Curse word - LOL).

REPLY
1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Feb 21, 2022
In reply to @julkun "Thanks Chris and the others in the chain. I don't have the luxury of thinking positive..." + (show)
@julkun

Thanks Chris and the others in the chain. I don't have the luxury of thinking positive when I am in a severe pain period. I want to take some sort of action. Creams, lotions, vibrating devices, soaking my feet, exercising, stretching, extra-strength Tylenol, ice pack, heating pad, different shoes, etc. Nothing really works. I know why!!! The inflamed damaged nerves are sending pain signals to the brain. None of the above are attacking the source. This isn't eczema where you rub a cream on and it starts to itch less and eventually gets better. I know I will never be cured but I need to find out if there is a way to stop or really reduce the pain signal from the inflamed nerve from going to my brain. (Note: During covid the neuropathy pain was reduced by a lot. Maybe my pain receptors were too busy with the Covid pains, just a thought). Lastly, I am sick of reading about the NEW pill that stops neuropathy. They are all greedy liars trying to exploit us. (Curse word - LOL).

Jump to this post

Thanks for your "from the heart" reply. My private statement to myself is that my nerves are dying faster than I am. Remember that with SFN.....there aren't enough active nerves to send the appropriate messages. With the resulting confusion in the brain.......the signals that go back to the area are ones of pain.

I am quite concerned about your statement that you don't have the luxury of thinking positively when you are in severe pain. That is the exact time that you need to implement mindfulness practice. You may benefit from an introduction to @rwinney. She and I have shared several years of mutual support for each other. Rachel, at one time, was close to if not in the place that you appear to be right now. She has evolved to a place of control of her neuropathic pain as well as other conditions she lives with every day.

May you be safe, protected, and free from inner and outer harm.
Chris

REPLY
1 reply
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Feb 21, 2022
In reply to @carol228 "Thank you Chris for your information. My neurologist and I have been more focused on my..." + (show)
@carol228

Thank you Chris for your information. My neurologist and I have been more focused on my migraines lately.
But my neuropathy has really been bothering me . I think because of our cold . ( which is not to be compared to yours ) we barely have a freeze. But, I cannot tolerate cold at all.
I will ask my neurologist to see if Duloxetine will help me. Thanks and be well.

Jump to this post

So....cold impacts your neuropathy. What are the symptoms you are dealing with......pain, tingling, numbness? Have you had migraines for quite a while?
Would you please let me know about the Duloxetine? It is such a life saver for me. Good luck.
Chris

REPLY
oceanlady22 | @oceanlady22 | Feb 21, 2022

Well this is the 4th time I have got up due to pain in my legs (calves) & feet I put Salonpas on both calves & high socks. Quite a sexy look if you ask me. I run the heat on 78 degrees all day. My hands & feet are always cold. I can't wait for summer. I was doing chemo & radiation last summer so I don't know how the warm temperature will affect me. I hope you have a wonderful & warm day.

REPLY
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