My 29 year old daughter was diagnosed with idiopathic sfn by a punch biopsy when she was 23 on the day she was celebrated into the Physical Therapy Doctoral program at Vermont University. She dropped out because she could not bare studying about something she had. She was told it was probably viral and would go away. She had no pain but just tingling and twitching in legs. A few days ago and six years later sfn has returned with extreme burning and stabbing all over her body along with some other symptoms. She is too terrified to read or research. She was in the best place of her life in her career working in cardiology ( echos ) , athletic and getting ready to travel. So the answer to your question is I am trying to find out where to take her and how to get in so that she can find the cause and reverse it ,cure it , treat it. Her original Neurologist will not see her until the end of Jan as a new patient.
Hi,
I put my two cents worth in here before, but I feel there is a little hope.
I have had symptoms of neuropathy for 30 years. I was not diagnosed until 2016. I started feeling a little "different a few months before it knocked me down. Then, my daughter flew in from Oregon to take care of me. ( I am in PA) My feet were screaming! I actually could not sit or lie down I had to keep moving to have less concentration of the intense pain! No pills or anything helped...UNTIL I started taking CBD. I am still in some pain, but it is tolerable! HUGE difference from 2016, even though PN is progressive! I make myself exercise, even though I actually don't like it, but it makes a difference! All this to say, it can get better. Best wishes, I hope you can try the CBD!
John
In the MAYO CLINIC
, UTUBE BY A WELL STA BLISH PROFF /DOc, who is and has been giving PRESENTATIONS on
About FIBROMYALGIA .
SEE HIS RESEARCH AND
APPROVED STUDYS .. UNDERLINING WHAT HE HAS BEEN PUSHING
TO FOCUSED ON FIBROMYALGIA TO QUIET THE BRAIN TO HELP AND TRUKY CONTROL ALL THE PAIN, BURNS, which is my DESPERATION AND ANXIETY .. 🙏
HIS IS
DR. DANIEL J CLAUW..
CLINIC MAYO EXPERT.
Please pass this on in your own words to my dear friends in pain.
Hi,
I put my two cents worth in here before, but I feel there is a little hope.
I have had symptoms of neuropathy for 30 years. I was not diagnosed until 2016. I started feeling a little "different a few months before it knocked me down. Then, my daughter flew in from Oregon to take care of me. ( I am in PA) My feet were screaming! I actually could not sit or lie down I had to keep moving to have less concentration of the intense pain! No pills or anything helped...UNTIL I started taking CBD. I am still in some pain, but it is tolerable! HUGE difference from 2016, even though PN is progressive! I make myself exercise, even though I actually don't like it, but it makes a difference! All this to say, it can get better. Best wishes, I hope you can try the CBD!
Hi,
I put my two cents worth in here before, but I feel there is a little hope.
I have had symptoms of neuropathy for 30 years. I was not diagnosed until 2016. I started feeling a little "different a few months before it knocked me down. Then, my daughter flew in from Oregon to take care of me. ( I am in PA) My feet were screaming! I actually could not sit or lie down I had to keep moving to have less concentration of the intense pain! No pills or anything helped...UNTIL I started taking CBD. I am still in some pain, but it is tolerable! HUGE difference from 2016, even though PN is progressive! I make myself exercise, even though I actually don't like it, but it makes a difference! All this to say, it can get better. Best wishes, I hope you can try the CBD!
Thank you so much for sharing. So kind of you. I don't know much about CBD. Is it something you take orally or topically?
My heart breaks of the pain this disease is causing. All the best to you.
Hi,
I was referred to a particular Doctor because of the type of pain I had. The next Doctor evaluated me again and applied for a Medical Card for these products. It came in the mail about 2 weeks later. I realized CBD was Medicine, not a recreational product, and have been on it since. There are many forms, I prefer capsules. Every State is different when it comes to these products. In Oregon it is not restricted in any way, so I was lucky to have an Oregon family member give me information. There is also a cream for my feet, but that is THC.
See what you can find out. Some Grocery stores carry CBD. I have not found the "Hemp" products to be as effective as products from the dispensary, but everyone is different! It is a study, it is a search, it is trial and error, but don't give up. Best wishes for less pain!!
John, Volunteer Mentor | @johnbishop | Jun 14, 2022
Upcoming Small Fiber Neuropathy Webinar - Mon, Jul 11, 2022 10:30 AM - 11:30 AM CDT
Small fiber neuropathy (SFN) is a common, yet underappreciated, subclass of peripheral neuropathy. While SFN shares many features with large fiber neuropathy, it has unique aspects in its evaluation and management that warrant particular attention. In this talk, Dr. Stino will review approaches to the diagnostic evaluation, testing, workup, and pain management of SFN. The aim of the talk is to assist patients struggling with small fiber neuropathy seek appropriate care and to be aware of research developments in the field.
The Foundation for Peripheral Neuropathy (FPN) is pleased to welcome Amro Stino, MD, from Michigan Medicine, to present on this form of neuropathy.
I thought I would share my experience, in case it might help anybody else suffering from SFN.
I'm mid-50s, very active, not overweight, non-smoker, non-drinker. I started having burning/tingling/pain issues in my left foot two years ago, which spread up my leg and also appeared in one hand. I had every diagnostic test under the sun -- blood work, multiple MRIs, nerve conduction tests, lumbar puncture, skin biopsy. The biopsy confirmed SFN, but otherwise I was basically completely healthy according to the tests. Specialists deemed my SFN idiopathic, prescribed gabapentin (which didn't help at all), and sent me on my way.
By early this year, the pain was such that walking and using my hand was very difficult, and I spent most of the day in bed. Needless to say, quality of life and mood were not great.
I then had another set of blood tests as part of an annual physical, and they showed that my A1C had risen to the prediabetic range. I read some papers demonstrating a possible correlation between 'idiopathic' SFN and irregular glucose processing issues, especially post-meal glucose processing. On a lark I bought a glucose testing kit, and sure enough found that my glucose levels spiked rather high after a normal meal. So I started on a fairly strict low-carb diet.
Within a couple of weeks, my symptoms started to improve. Six months later, I'm now back at work full time, with only occasional, mildly annoying SFN symptoms, with occasional flare-ups when when sleep deprived or under significant stress.
I'll note that because my case didn't fall into the conventional wisdom re: diabetes and SFN (i.e., "people don't get SFN with prediabetes"), the entirely well-meaning medical professionals I've spoken to have been slow to order further tests. For example, there is published evidence that treating symptomatic prediabetes with low-dose insulin may be beneficial for long-term outcomes. But because this falls outside of "normal" disease presentation, I've had to advocate for further testing myself. Even the SFN specialists at the local world-class teaching hospital only asked if I were diabetic, never ordered any glucose testing, etc.
Again, I share this with the hope that it may give ideas and further hope to somebody suffering with SFN. Thanks and best of luck to all.
Hello @nullz, Thank you for sharing your experience. I've also been diagnosed with idiopathic small fiber peripheral neuropathy but only have the numbness. I've been in the prediabetes category most of my adult life and it's only been the past few years after doing a lot of research that I've made lifestyle changes to try and help. I've also wondered about different causes and connections and started looking into the metabolic syndrome since I fall into that condition also.
It's really good to hear you've found an answer for your SFN. Hoping others read your story and benefit by your experience. Do you mind sharing what brought you to Connect, what you were searching for?
Hello @nullz, Thank you for sharing your experience. I've also been diagnosed with idiopathic small fiber peripheral neuropathy but only have the numbness. I've been in the prediabetes category most of my adult life and it's only been the past few years after doing a lot of research that I've made lifestyle changes to try and help. I've also wondered about different causes and connections and started looking into the metabolic syndrome since I fall into that condition also.
It's really good to hear you've found an answer for your SFN. Hoping others read your story and benefit by your experience. Do you mind sharing what brought you to Connect, what you were searching for?
Thanks for the note, John; much appreciated. I don't personally fit enough of the metabolic syndrome criteria to match the diagnosis, but it is interesting that there is increasing evidence that glucose control isn't the whole story w.r.t. otherwise idiopathic peripheral neuropathy.
Although a diet change has improved my symptoms greatly, I'm not convinced that there isn't (also?) something else going on, as my glucose levels barely qualify as prediabetic, and I have a few other other symptoms (e.g., recent large decrease in BP) that are 'atypical'. So articles like the one you linked to make for interesting reading.
I've lurked on Connect for a while, finding it helpful to read of others' experiences, both in terms of learning new things (e.g. your links) and, frankly, finding a bit of hope; the psychological toll of SFN can be rough, and a bit of hope went a very long way when my symptoms were at their worst. I joined and posted today because I saw a message claiming that SFN was always permanent because SF nerves don't regrow (which is, as you know, is incorrect) and wanted to be balance that claim with a story of some success.
Thanks for the note, John; much appreciated. I don't personally fit enough of the metabolic syndrome criteria to match the diagnosis, but it is interesting that there is increasing evidence that glucose control isn't the whole story w.r.t. otherwise idiopathic peripheral neuropathy.
Although a diet change has improved my symptoms greatly, I'm not convinced that there isn't (also?) something else going on, as my glucose levels barely qualify as prediabetic, and I have a few other other symptoms (e.g., recent large decrease in BP) that are 'atypical'. So articles like the one you linked to make for interesting reading.
I've lurked on Connect for a while, finding it helpful to read of others' experiences, both in terms of learning new things (e.g. your links) and, frankly, finding a bit of hope; the psychological toll of SFN can be rough, and a bit of hope went a very long way when my symptoms were at their worst. I joined and posted today because I saw a message claiming that SFN was always permanent because SF nerves don't regrow (which is, as you know, is incorrect) and wanted to be balance that claim with a story of some success.
Thanks again for sharing some hope. That's actually the reason that brought me to Connect in 2016 after being diagosed with idiopathic SFPN at Mayo Rochester and my neurologist telling me the same thing that my primary care had told me after 20+ years of living with the numbness creeping from toes, to the bottom of the feet up into the ankles and then the legs which is when I started wanting to follow up for a diagnosis and see if I could find something that helped. I was in the dumper when the neurologist told me there was nothing that would help with the numbness and I started searching and found Connect. Reading experiences shared by other members has also given me some hope and helped me become a better advocate for my own health.
Not sure if you are into low carb healthy fat living but there is another discussion that has helped me that you might find helpful if you still fit the prediabetes category. I was always a prediabetic denier with my doctor because I frankly didn't understand it and didn't bother to learn more at the time. A little research went a long way to enlighten me and help with my weight loss at the same time.
If you haven't seen any videos by Dr. Jay Wortman, I think you might really like this one.
-- Dr. Jay Wortman - 'Undoing Atkins: A Cautionary Tale': https://www.youtube.com/watch?v=jIegMp5cWBY
Connect
Connect
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Hi,
I put my two cents worth in here before, but I feel there is a little hope.
I have had symptoms of neuropathy for 30 years. I was not diagnosed until 2016. I started feeling a little "different a few months before it knocked me down. Then, my daughter flew in from Oregon to take care of me. ( I am in PA) My feet were screaming! I actually could not sit or lie down I had to keep moving to have less concentration of the intense pain! No pills or anything helped...UNTIL I started taking CBD. I am still in some pain, but it is tolerable! HUGE difference from 2016, even though PN is progressive! I make myself exercise, even though I actually don't like it, but it makes a difference! All this to say, it can get better. Best wishes, I hope you can try the CBD!
-
Like -
Helpful -
Hug
4 ReactionsJohn
In the MAYO CLINIC
, UTUBE BY A WELL STA BLISH PROFF /DOc, who is and has been giving PRESENTATIONS on
About FIBROMYALGIA .
SEE HIS RESEARCH AND
APPROVED STUDYS .. UNDERLINING WHAT HE HAS BEEN PUSHING
TO FOCUSED ON FIBROMYALGIA TO QUIET THE BRAIN TO HELP AND TRUKY CONTROL ALL THE PAIN, BURNS, which is my DESPERATION AND ANXIETY .. 🙏
HIS IS
DR. DANIEL J CLAUW..
CLINIC MAYO EXPERT.
Please pass this on in your own words to my dear friends in pain.
I PRAY FOR ALL YOU DAILY. Amen
Carlos Here…
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1 ReactionWhat type and dosage of CBD please?
Thank you so much for sharing. So kind of you. I don't know much about CBD. Is it something you take orally or topically?
My heart breaks of the pain this disease is causing. All the best to you.
Hi,
I was referred to a particular Doctor because of the type of pain I had. The next Doctor evaluated me again and applied for a Medical Card for these products. It came in the mail about 2 weeks later. I realized CBD was Medicine, not a recreational product, and have been on it since. There are many forms, I prefer capsules. Every State is different when it comes to these products. In Oregon it is not restricted in any way, so I was lucky to have an Oregon family member give me information. There is also a cream for my feet, but that is THC.
See what you can find out. Some Grocery stores carry CBD. I have not found the "Hemp" products to be as effective as products from the dispensary, but everyone is different! It is a study, it is a search, it is trial and error, but don't give up. Best wishes for less pain!!
-
Like -
Helpful -
Hug
2 ReactionsUpcoming Small Fiber Neuropathy Webinar - Mon, Jul 11, 2022 10:30 AM - 11:30 AM CDT
Small fiber neuropathy (SFN) is a common, yet underappreciated, subclass of peripheral neuropathy. While SFN shares many features with large fiber neuropathy, it has unique aspects in its evaluation and management that warrant particular attention. In this talk, Dr. Stino will review approaches to the diagnostic evaluation, testing, workup, and pain management of SFN. The aim of the talk is to assist patients struggling with small fiber neuropathy seek appropriate care and to be aware of research developments in the field.
The Foundation for Peripheral Neuropathy (FPN) is pleased to welcome Amro Stino, MD, from Michigan Medicine, to present on this form of neuropathy.
Register for the Webinar - https://register.gotowebinar.com/register/1980466056216495630
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Like -
Helpful -
Hug
3 ReactionsI thought I would share my experience, in case it might help anybody else suffering from SFN.
I'm mid-50s, very active, not overweight, non-smoker, non-drinker. I started having burning/tingling/pain issues in my left foot two years ago, which spread up my leg and also appeared in one hand. I had every diagnostic test under the sun -- blood work, multiple MRIs, nerve conduction tests, lumbar puncture, skin biopsy. The biopsy confirmed SFN, but otherwise I was basically completely healthy according to the tests. Specialists deemed my SFN idiopathic, prescribed gabapentin (which didn't help at all), and sent me on my way.
By early this year, the pain was such that walking and using my hand was very difficult, and I spent most of the day in bed. Needless to say, quality of life and mood were not great.
I then had another set of blood tests as part of an annual physical, and they showed that my A1C had risen to the prediabetic range. I read some papers demonstrating a possible correlation between 'idiopathic' SFN and irregular glucose processing issues, especially post-meal glucose processing. On a lark I bought a glucose testing kit, and sure enough found that my glucose levels spiked rather high after a normal meal. So I started on a fairly strict low-carb diet.
Within a couple of weeks, my symptoms started to improve. Six months later, I'm now back at work full time, with only occasional, mildly annoying SFN symptoms, with occasional flare-ups when when sleep deprived or under significant stress.
I'll note that because my case didn't fall into the conventional wisdom re: diabetes and SFN (i.e., "people don't get SFN with prediabetes"), the entirely well-meaning medical professionals I've spoken to have been slow to order further tests. For example, there is published evidence that treating symptomatic prediabetes with low-dose insulin may be beneficial for long-term outcomes. But because this falls outside of "normal" disease presentation, I've had to advocate for further testing myself. Even the SFN specialists at the local world-class teaching hospital only asked if I were diabetic, never ordered any glucose testing, etc.
Again, I share this with the hope that it may give ideas and further hope to somebody suffering with SFN. Thanks and best of luck to all.
-
Like -
Helpful -
Hug
4 ReactionsHello @nullz, Thank you for sharing your experience. I've also been diagnosed with idiopathic small fiber peripheral neuropathy but only have the numbness. I've been in the prediabetes category most of my adult life and it's only been the past few years after doing a lot of research that I've made lifestyle changes to try and help. I've also wondered about different causes and connections and started looking into the metabolic syndrome since I fall into that condition also.
Here are a couple of references that discuss it if you would like to learn more...
-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
-- Metabolic syndrome as a risk factor for neurological disorders
https://pubmed.ncbi.nlm.nih.gov/21997383/
It's really good to hear you've found an answer for your SFN. Hoping others read your story and benefit by your experience. Do you mind sharing what brought you to Connect, what you were searching for?
-
Like -
Helpful -
Hug
3 ReactionsThanks for the note, John; much appreciated. I don't personally fit enough of the metabolic syndrome criteria to match the diagnosis, but it is interesting that there is increasing evidence that glucose control isn't the whole story w.r.t. otherwise idiopathic peripheral neuropathy.
Although a diet change has improved my symptoms greatly, I'm not convinced that there isn't (also?) something else going on, as my glucose levels barely qualify as prediabetic, and I have a few other other symptoms (e.g., recent large decrease in BP) that are 'atypical'. So articles like the one you linked to make for interesting reading.
I've lurked on Connect for a while, finding it helpful to read of others' experiences, both in terms of learning new things (e.g. your links) and, frankly, finding a bit of hope; the psychological toll of SFN can be rough, and a bit of hope went a very long way when my symptoms were at their worst. I joined and posted today because I saw a message claiming that SFN was always permanent because SF nerves don't regrow (which is, as you know, is incorrect) and wanted to be balance that claim with a story of some success.
-
Like -
Helpful -
Hug
5 ReactionsThanks again for sharing some hope. That's actually the reason that brought me to Connect in 2016 after being diagosed with idiopathic SFPN at Mayo Rochester and my neurologist telling me the same thing that my primary care had told me after 20+ years of living with the numbness creeping from toes, to the bottom of the feet up into the ankles and then the legs which is when I started wanting to follow up for a diagnosis and see if I could find something that helped. I was in the dumper when the neurologist told me there was nothing that would help with the numbness and I started searching and found Connect. Reading experiences shared by other members has also given me some hope and helped me become a better advocate for my own health.
Not sure if you are into low carb healthy fat living but there is another discussion that has helped me that you might find helpful if you still fit the prediabetes category. I was always a prediabetic denier with my doctor because I frankly didn't understand it and didn't bother to learn more at the time. A little research went a long way to enlighten me and help with my weight loss at the same time.
-- Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/
If you haven't seen any videos by Dr. Jay Wortman, I think you might really like this one.
-- Dr. Jay Wortman - 'Undoing Atkins: A Cautionary Tale': https://www.youtube.com/watch?v=jIegMp5cWBY
-
Like -
Helpful -
Hug
5 Reactions