Recently Diagnosed with Small Fiber Neuropathy

Posted by resage @resage, Jun 9 12:52pm

I am new to this site as I was just diagnosed with Small Fiber Neuropathy after MRIs, EMG and a physical exam by my Neurologist. The EMG and blood tests were normal as well as the MRI of my spine and lumbar area. I am a 75 year old male and have symptoms for about 5 weeks- extremely cold feet and legs, numbing and changing to hot at times. No pain or tingling. I was prescribed gabapentin and currently on 600 mg once per day with no symptom relief for about two weeks. He will add an additional 300 mg. Lying down worsens the symptoms and that only allows me to sleep for a few hours each night. Had both Moderna shots completed at the end of February.Ny Neurologist says the cause can't be determined so only treatment. I am requesting any ideas that you may have regarding what treatment options are available and ways to deal with my symptoms. Do non prescription or physical therapy work? Or anything else? My symptoms seem unique.

May I ask if you had the Covid vaccine before your recent diagnosis?

REPLY

Oh sorry I see you had both Moderna vaccines. I took one Moderna vaccine and also was diagnosed with neuropathy within a month after. It’s NOT a coincidence with us. I’m on 300mg of Gabapentin at bedtime just so that I can sleep for a few hours. Your symptoms are not unique at all. Try to walk and move as much as possible. Mine is worse than yours I have in my hands and arms in addition to
My feet and legs. In addition, I also have bulging veins and tinnitus. You should examine your veins on your legs.

REPLY

Good afternoon @resage. Welcome to Connect and particularly Connect for neuropathy. I notice that you did not mention a skin test biopsy. That, so far, is required to confirm small fiber neuropathy (SFN). It is a simple test, not painful, and very quick. The sample is then sent to a special lab that measures the percentage of nerve cells that you have in the sample. Mine was .09%…..hardly enough to do even a mediocre job of calming down the symptoms.

I notice that you are what is called "idiopathic" meaning the cause is unknown. Gabapentin was my first medication. I still use 600 mg a day to reduce the numbness and tingling in my hands, wrists, and arms. The cold, icy legs and feet are just part of my daily visit from Mr. Neuropathy. As of this moment, I have only one other medication and that is duloxetine. It prevents me from letting anxiety take away my attempts to tolerate and control the painful and annoying symptoms.

You asked about other treatments. My #1 choice is MFR…..myofascial relief therapy. Because fascia is the material that covers all connective material in our bodies….when it is restricted and all stuck together….you have significant difficulties getting everything all straightened out. Pay a visit to http://www.myfascialrelease.com to learn more. I now have 2 sessions a week.

Exercise is still an essential part of feeling the best we can. I do Yoga every morning….using a routine designed for me and my SFN. I also practice mindfulness meditation every day, belong to a sangha, and attend two retreats a year to hone my skills. All I can say about these helpful activities is that they make a huge difference in my life and allow me to just be more human.

As for pain meds…I do not use them. In fact, I refuse to use them. I don't need the digestive issues and the discomfort that they can cause. My pain is totally controlled by medical cannabis. I use tinctures and topicals only. I have different types and different dosages for the time of day and activity level. I sleep well and if it weren't for the darn icy legs, would wake up ready to mow the lawn.

At this point, I would like to introduce one of my partner mentors in this group, @johnbishop. He, like you, has no pain with his neuropathy and just lots of information and experience to share.

May you be safe, protected, and free of pain and discomfort.
Chris

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@artscaping

Good afternoon @resage. Welcome to Connect and particularly Connect for neuropathy. I notice that you did not mention a skin test biopsy. That, so far, is required to confirm small fiber neuropathy (SFN). It is a simple test, not painful, and very quick. The sample is then sent to a special lab that measures the percentage of nerve cells that you have in the sample. Mine was .09%…..hardly enough to do even a mediocre job of calming down the symptoms.

I notice that you are what is called "idiopathic" meaning the cause is unknown. Gabapentin was my first medication. I still use 600 mg a day to reduce the numbness and tingling in my hands, wrists, and arms. The cold, icy legs and feet are just part of my daily visit from Mr. Neuropathy. As of this moment, I have only one other medication and that is duloxetine. It prevents me from letting anxiety take away my attempts to tolerate and control the painful and annoying symptoms.

You asked about other treatments. My #1 choice is MFR…..myofascial relief therapy. Because fascia is the material that covers all connective material in our bodies….when it is restricted and all stuck together….you have significant difficulties getting everything all straightened out. Pay a visit to http://www.myfascialrelease.com to learn more. I now have 2 sessions a week.

Exercise is still an essential part of feeling the best we can. I do Yoga every morning….using a routine designed for me and my SFN. I also practice mindfulness meditation every day, belong to a sangha, and attend two retreats a year to hone my skills. All I can say about these helpful activities is that they make a huge difference in my life and allow me to just be more human.

As for pain meds…I do not use them. In fact, I refuse to use them. I don't need the digestive issues and the discomfort that they can cause. My pain is totally controlled by medical cannabis. I use tinctures and topicals only. I have different types and different dosages for the time of day and activity level. I sleep well and if it weren't for the darn icy legs, would wake up ready to mow the lawn.

At this point, I would like to introduce one of my partner mentors in this group, @johnbishop. He, like you, has no pain with his neuropathy and just lots of information and experience to share.

May you be safe, protected, and free of pain and discomfort.
Chris

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Hi @artscaping . Thanks so much for your response and insights. I have not had the skin biopsy yet but my Neurologist wants me to have it- just didn't yet because I'm tired of tests with no conclusions that are helpful. I will consider all of the other interventions you mention. For now, I would just love to be able to sleep as the icy cold feet and legs prevent me from falling asleep. I look forward to hearing from the other mentor you mentioned. Thanks!

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@thx1

Oh sorry I see you had both Moderna vaccines. I took one Moderna vaccine and also was diagnosed with neuropathy within a month after. It’s NOT a coincidence with us. I’m on 300mg of Gabapentin at bedtime just so that I can sleep for a few hours. Your symptoms are not unique at all. Try to walk and move as much as possible. Mine is worse than yours I have in my hands and arms in addition to
My feet and legs. In addition, I also have bulging veins and tinnitus. You should examine your veins on your legs.

Jump to this post

Hi, and will do. Thanks for the suggestions.I am on 600mg of gabapentin and increasing to another 300 and still can't sleep due to ice cold feet and legs. Looking for other sleep suggestions. Thanks!

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@resage

Hi, and will do. Thanks for the suggestions.I am on 600mg of gabapentin and increasing to another 300 and still can't sleep due to ice cold feet and legs. Looking for other sleep suggestions. Thanks!

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Try one generic Xanax (Alprozalam) at bedtime-relaxes the muscles so your natural tiredness can put you to sleep❗️Works very well, and can be combined with 1/2 an Ambien if necessary.

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@resage

Hi, and will do. Thanks for the suggestions.I am on 600mg of gabapentin and increasing to another 300 and still can't sleep due to ice cold feet and legs. Looking for other sleep suggestions. Thanks!

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I know Chris mentioned medical cannabis. I found the mix of 2-300 mg Gabapentin with a small amount of cannabis edible or tincture at night was the only thing that would put me to sleep. I woke up fine and no “hangover” and had no contrary drug interactions. You can usually speak with representatives at medical cannabis dispensaries and they’re quite knowledgeable about what strains and dosage might meet your needs.

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Hello @resage, I would like to add my welcome to Connect along with @artscaping and other members. I have idiopathic small fiber peripheral neuropathy. I think you have already started on what I consider an important step after being diagnosed with neuropathy – learn as much as you can about your condition. What initially helped me was reading the experiences and learning what others have shared. I posted my neuropathy story earlier in this discussion here – https://connect.mayoclinic.org/comment/310341/ You may want to read through the discussion to learn what other members have shared helps them.

The second thing that helped me was finding credible health information on neuropathy and not just the "neuropathy cure ads" you see when searching the Internet. There is a discussion you might find helpful – How do you identify trustworthy health information?: https://connect.mayoclinic.org/discussion/how-do-you-identify-trustworthy-health-information/ — ​My two go to websites are:
— Neuropathy Commons: https://neuropathycommons.org/
— The Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

I have no medical training or background but think that there is no cure for neuropathy and it all boils down to living as well as you can with neuropathy by using any method that gives you relief from your neuropathy symptoms. You might find this page on the Foundation for Peripheral Neuropathy as a good start at being more informed: https://www.foundationforpn.org/living-well/.

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@jamesbstarkman

Try one generic Xanax (Alprozalam) at bedtime-relaxes the muscles so your natural tiredness can put you to sleep❗️Works very well, and can be combined with 1/2 an Ambien if necessary.

Jump to this post

Thank you for the suggestion!

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@johnbishop

Hello @resage, I would like to add my welcome to Connect along with @artscaping and other members. I have idiopathic small fiber peripheral neuropathy. I think you have already started on what I consider an important step after being diagnosed with neuropathy – learn as much as you can about your condition. What initially helped me was reading the experiences and learning what others have shared. I posted my neuropathy story earlier in this discussion here – https://connect.mayoclinic.org/comment/310341/ You may want to read through the discussion to learn what other members have shared helps them.

The second thing that helped me was finding credible health information on neuropathy and not just the "neuropathy cure ads" you see when searching the Internet. There is a discussion you might find helpful – How do you identify trustworthy health information?: https://connect.mayoclinic.org/discussion/how-do-you-identify-trustworthy-health-information/ — ​My two go to websites are:
— Neuropathy Commons: https://neuropathycommons.org/
— The Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

I have no medical training or background but think that there is no cure for neuropathy and it all boils down to living as well as you can with neuropathy by using any method that gives you relief from your neuropathy symptoms. You might find this page on the Foundation for Peripheral Neuropathy as a good start at being more informed: https://www.foundationforpn.org/living-well/.

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This is so helpful. Thank you very much!

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@athenalee

I know Chris mentioned medical cannabis. I found the mix of 2-300 mg Gabapentin with a small amount of cannabis edible or tincture at night was the only thing that would put me to sleep. I woke up fine and no “hangover” and had no contrary drug interactions. You can usually speak with representatives at medical cannabis dispensaries and they’re quite knowledgeable about what strains and dosage might meet your needs.

Jump to this post

Thank you for the suggestion. In NY you need to find an MD that's specifically licensed to prescribe medical marijuana. I will certainly consider that. For some reason I slept last night with minimal symptoms. Do others experience nights that differ with no known difference in your routine that day? My symptoms are just ice cold feet and legs with no pain, tingling or anything else.

REPLY
@artscaping

Good afternoon @resage. Welcome to Connect and particularly Connect for neuropathy. I notice that you did not mention a skin test biopsy. That, so far, is required to confirm small fiber neuropathy (SFN). It is a simple test, not painful, and very quick. The sample is then sent to a special lab that measures the percentage of nerve cells that you have in the sample. Mine was .09%…..hardly enough to do even a mediocre job of calming down the symptoms.

I notice that you are what is called "idiopathic" meaning the cause is unknown. Gabapentin was my first medication. I still use 600 mg a day to reduce the numbness and tingling in my hands, wrists, and arms. The cold, icy legs and feet are just part of my daily visit from Mr. Neuropathy. As of this moment, I have only one other medication and that is duloxetine. It prevents me from letting anxiety take away my attempts to tolerate and control the painful and annoying symptoms.

You asked about other treatments. My #1 choice is MFR…..myofascial relief therapy. Because fascia is the material that covers all connective material in our bodies….when it is restricted and all stuck together….you have significant difficulties getting everything all straightened out. Pay a visit to http://www.myfascialrelease.com to learn more. I now have 2 sessions a week.

Exercise is still an essential part of feeling the best we can. I do Yoga every morning….using a routine designed for me and my SFN. I also practice mindfulness meditation every day, belong to a sangha, and attend two retreats a year to hone my skills. All I can say about these helpful activities is that they make a huge difference in my life and allow me to just be more human.

As for pain meds…I do not use them. In fact, I refuse to use them. I don't need the digestive issues and the discomfort that they can cause. My pain is totally controlled by medical cannabis. I use tinctures and topicals only. I have different types and different dosages for the time of day and activity level. I sleep well and if it weren't for the darn icy legs, would wake up ready to mow the lawn.

At this point, I would like to introduce one of my partner mentors in this group, @johnbishop. He, like you, has no pain with his neuropathy and just lots of information and experience to share.

May you be safe, protected, and free of pain and discomfort.
Chris

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Chris, you are such a dear, remarkable person. thank you for this message. I've been working on my mental/emotional attitudes, as I've not felt well the last several weeks and getting tired of the feelings of loss, etc. So, you, as you normally do, sent a message to someone and I benefited. I'm adding more music and art tonight, and will be focusing beginning tomorrow on increasing movement, not full exercise until after I have a few more tests re heart, etc., but movement and mindfulness. You are an inspiration.

Thank you. I'm getting my tincture now to help, putting on some music and remembering what a blessing this day is for me and all.
Blessings to you, be well and per you, 'free of pain and discomfort'!
elizabeth

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