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.
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 @demidio, I'm hoping you can help your daughter find some relief and answers for the burning and stabbing pain. It is very difficult for others to understand this struggle but she is not alone and sometimes that can be helpful. There is no magic bullet or cure for neuropathy but their are treatments for the different symptoms. It might be helpful to read through what other members have found helped them in their journey with neuropathy --- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
@katec has a similar story doing research for her son and may have some thoughts to share with you.
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.
My situation is similar to yours I am researching for my 38 year old son. Very athletic and health conscious but had a run with stress and anxiety about a year ago (lasted for a year), then became stricken with SFN. 6 months to get diagnosis and 100% of the 4 doctors said he was likely bipolar, depressed and just to take meds. This had nothing to do with anything. He was depressed and moody because of the SFN. Unbelievable the frustration we went through. We even were told he needed to detox after taking the prescribed benzos for anxiety, which he was willing to do but he was not addicted, just suffering from SFN. The facility treated him like he was an unruly addict as well - again adding to the anxiety. He has terrible balance issues and is trying to raise a toddler and still have a career and a life. The only thing we can think of that triggered this was stress and/or he did have semi mild case of COVID. He does not take any meds now because of the horrible nature of the physicians trying to just prescribe anything. Is there any link to high stress and SFN? We all want some hope - is there anyone out there that has recovered from SFN?
Hi @demidio, I'm hoping you can help your daughter find some relief and answers for the burning and stabbing pain. It is very difficult for others to understand this struggle but she is not alone and sometimes that can be helpful. There is no magic bullet or cure for neuropathy but their are treatments for the different symptoms. It might be helpful to read through what other members have found helped them in their journey with neuropathy --- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
@katec has a similar story doing research for her son and may have some thoughts to share with you.
Thank you for your kindness and information. She is still processing and afraid. Its hard to plan her life when she has no idea how much this will effect her future. She is having trouble working with all the pain and anxiety but afraid to loose insurance if leaving job. The ranges of sfn are so extreme. Do you know if most people with sfn have flare ups for a certain amount of time or its every day coping with the symptoms?
I have SNF that is idiopathic and non length dependent. I have some questions for anyone with this issue. In March of last year I woke up with full onset of pinpricks all over and in my eyes. Then in April I woke up with a funny feeling in my chest and thought it was my palpitations acting up. It wasn't it was my heart rate. The holter monitor test showed my heart rate went up to 183. My Cardiologist put me on Metoprolol and it has worked for me. Sunday night I was watching TV and I noticed that funny feeling in my chest again. I took my pulse rate and it was 97. So I was due to take my Metoprolol and I did and it went down. I take the Metoprolol twice daily. My questions are as follows:
Have any of you had high heart rate issues and if so what has been done about it. I have already gone to the cardiologist and I am having another holter monitor and my meds have been adjusted. I do know from reading that the autonomic nervous system with the heart being one issue that can be affected by the SNF. I had an ECHO and a stress test last year and nothing showed any reason as to why my heart rate was affected. It bothers me that I am taking a med to keep my heart rate down and it went up. Has anyone had any issues like this? I am going to go back to the neurologist to ask more questions and I am not sure he is going to be able to answer those. I am just curious to know if anyone else has had issues like this and what they are. I am wondering why the meds wouldn't work this time. I take my BP manually and also my heart rate manually. Automatic cuffs can be off. Any information would be helpful.
Thank you for your kindness and information. She is still processing and afraid. Its hard to plan her life when she has no idea how much this will effect her future. She is having trouble working with all the pain and anxiety but afraid to loose insurance if leaving job. The ranges of sfn are so extreme. Do you know if most people with sfn have flare ups for a certain amount of time or its every day coping with the symptoms?
Thank you for your kindness and information. She is still processing and afraid. Its hard to plan her life when she has no idea how much this will effect her future. She is having trouble working with all the pain and anxiety but afraid to loose insurance if leaving job. The ranges of sfn are so extreme. Do you know if most people with sfn have flare ups for a certain amount of time or its every day coping with the symptoms?
Hi @demidio, I'm not sure but I think there can be times when the neuropathy has flare up and some days are better than others. Hoping other members can offer some suggestions for you. I don't have the pain but I do have the numbness. There is another discussion with current posts discussing a possible topical that may help --- Vick’s Vapor Rub for Neuropathy Pain: https://connect.mayoclinic.org/discussion/vicks-vapor-rub/
I am so sorry to hear about your children and SFN. I am 52 and was recently diagnosed but my issues started nearly 12 years ago. I take Lyrica (pregabalin) and duloxitine for the neuropathy. I was otld to keep moving no mater what for as soon as you stop, you will stop permanently. I walk 30 minutes a day nearly every day of the week and do aqua physical therapy two days a week. I have good days and bad days like your children. I know the anxiety and depression of the illness and the fear of the future. I went to Boston for help and found the drs I needed. I have also developed autonomic dysfunction and suffer from digestive issues, bladder retention/urgency, heart issues (tachnycardia) and high bllod pressure that my drs believe are part of the illness.
As stated before, SFN is not curable and there is no magic bullet. I tried marijuana gummies and CBD oil which did not seem to make a difference for me but might for your children as everyone is different. They are certainly not alone as there are many who suffer from SFN.
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Welcome @demidio, Have you also been diagnosed with small fiber neuropathy? Do you mind sharing what you were searching for when you found Connect?
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.
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7 ReactionsHi @demidio, I'm hoping you can help your daughter find some relief and answers for the burning and stabbing pain. It is very difficult for others to understand this struggle but she is not alone and sometimes that can be helpful. There is no magic bullet or cure for neuropathy but their are treatments for the different symptoms. It might be helpful to read through what other members have found helped them in their journey with neuropathy --- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
@katec has a similar story doing research for her son and may have some thoughts to share with you.
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2 ReactionsMy situation is similar to yours I am researching for my 38 year old son. Very athletic and health conscious but had a run with stress and anxiety about a year ago (lasted for a year), then became stricken with SFN. 6 months to get diagnosis and 100% of the 4 doctors said he was likely bipolar, depressed and just to take meds. This had nothing to do with anything. He was depressed and moody because of the SFN. Unbelievable the frustration we went through. We even were told he needed to detox after taking the prescribed benzos for anxiety, which he was willing to do but he was not addicted, just suffering from SFN. The facility treated him like he was an unruly addict as well - again adding to the anxiety. He has terrible balance issues and is trying to raise a toddler and still have a career and a life. The only thing we can think of that triggered this was stress and/or he did have semi mild case of COVID. He does not take any meds now because of the horrible nature of the physicians trying to just prescribe anything. Is there any link to high stress and SFN? We all want some hope - is there anyone out there that has recovered from SFN?
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Like -
Helpful -
Hug
2 ReactionsThank you for your kindness and information. She is still processing and afraid. Its hard to plan her life when she has no idea how much this will effect her future. She is having trouble working with all the pain and anxiety but afraid to loose insurance if leaving job. The ranges of sfn are so extreme. Do you know if most people with sfn have flare ups for a certain amount of time or its every day coping with the symptoms?
-
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Helpful -
Hug
2 ReactionsI have SNF that is idiopathic and non length dependent. I have some questions for anyone with this issue. In March of last year I woke up with full onset of pinpricks all over and in my eyes. Then in April I woke up with a funny feeling in my chest and thought it was my palpitations acting up. It wasn't it was my heart rate. The holter monitor test showed my heart rate went up to 183. My Cardiologist put me on Metoprolol and it has worked for me. Sunday night I was watching TV and I noticed that funny feeling in my chest again. I took my pulse rate and it was 97. So I was due to take my Metoprolol and I did and it went down. I take the Metoprolol twice daily. My questions are as follows:
Have any of you had high heart rate issues and if so what has been done about it. I have already gone to the cardiologist and I am having another holter monitor and my meds have been adjusted. I do know from reading that the autonomic nervous system with the heart being one issue that can be affected by the SNF. I had an ECHO and a stress test last year and nothing showed any reason as to why my heart rate was affected. It bothers me that I am taking a med to keep my heart rate down and it went up. Has anyone had any issues like this? I am going to go back to the neurologist to ask more questions and I am not sure he is going to be able to answer those. I am just curious to know if anyone else has had issues like this and what they are. I am wondering why the meds wouldn't work this time. I take my BP manually and also my heart rate manually. Automatic cuffs can be off. Any information would be helpful.
@demidio Hi there, I'm Rachel, it's nice to meet you. I wish you weren't here under such circumstances for your daughter.
May I ask if your daughter has a cause to her SFN. Did the neurologist find the underlying reason or is it idiopathic?
Hi @demidio, I'm not sure but I think there can be times when the neuropathy has flare up and some days are better than others. Hoping other members can offer some suggestions for you. I don't have the pain but I do have the numbness. There is another discussion with current posts discussing a possible topical that may help --- Vick’s Vapor Rub for Neuropathy Pain: https://connect.mayoclinic.org/discussion/vicks-vapor-rub/
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1 ReactionI am so sorry to hear about your children and SFN. I am 52 and was recently diagnosed but my issues started nearly 12 years ago. I take Lyrica (pregabalin) and duloxitine for the neuropathy. I was otld to keep moving no mater what for as soon as you stop, you will stop permanently. I walk 30 minutes a day nearly every day of the week and do aqua physical therapy two days a week. I have good days and bad days like your children. I know the anxiety and depression of the illness and the fear of the future. I went to Boston for help and found the drs I needed. I have also developed autonomic dysfunction and suffer from digestive issues, bladder retention/urgency, heart issues (tachnycardia) and high bllod pressure that my drs believe are part of the illness.
As stated before, SFN is not curable and there is no magic bullet. I tried marijuana gummies and CBD oil which did not seem to make a difference for me but might for your children as everyone is different. They are certainly not alone as there are many who suffer from SFN.
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Helpful -
Hug
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