My husband (we think) has SFN… waiting on results. Has anyone tried massage, PT or acupuncture? I have a friend who says acupuncture works if you give it 5 tries… any feedback? This would be through a Neuromuscular MD..
Thanks
Sheila 🙂
Hi,
I have small fiber neuropathy, with my main problem being hot, burning feet. I tried 10 acupuncture treatments with no help. Have also tried numerous drugs with no help. Very frustrating disease.
Hi,
I have small fiber neuropathy, with my main problem being hot, burning feet. I tried 10 acupuncture treatments with no help. Have also tried numerous drugs with no help. Very frustrating disease.
I’m so sorry and so understand. Now I am getting sores and changes of colors to the bottom of my feet also. Very hard to wear docs due to swelling ankles even the doctor recommended ones. It’s a very difficult problem. I’m seeing my new neurologist to discuss results from nerve tests and blood tests next week. Do you have pain in your legs? I’ll be hoping you find something that works. So difficult.
Diagnosed with SFN 3 years ago. I’m not diabetic. I’m considered idiopathic. Pain is either extreme cold or heat. Walking feels like I’m barefoot on a gravel road!!!! Legs ache constantly like I ran a marathon. I’ve tried everything, from various meds to acupuncture. Nothing really helps. It’s an extremely frustrating disease that seemingly has stumped every neurologist I’ve seen. I’m seeing my last neurologist in January at Mass General Hospital in Boston. She has made SFN her sole specialty. If she can’t help, I’m lost. I’ll live my remaining days in constant pain.
I hate opioids, but they’re the only medication that gets me through the day sometimes. I take them sparingly as I know the addiction issues. But really, what is one to do?
If something comes of this visit, I’ll get it out on this platform. I was very active not too long ago. Very athletic. Skiing, hiking, tennis. Hitting the gym 4 to 5 times a week. That’s all gone!!! Very depressing. But I just can’t give up!!!!
Diagnosed with SFN 3 years ago. I’m not diabetic. I’m considered idiopathic. Pain is either extreme cold or heat. Walking feels like I’m barefoot on a gravel road!!!! Legs ache constantly like I ran a marathon. I’ve tried everything, from various meds to acupuncture. Nothing really helps. It’s an extremely frustrating disease that seemingly has stumped every neurologist I’ve seen. I’m seeing my last neurologist in January at Mass General Hospital in Boston. She has made SFN her sole specialty. If she can’t help, I’m lost. I’ll live my remaining days in constant pain.
I hate opioids, but they’re the only medication that gets me through the day sometimes. I take them sparingly as I know the addiction issues. But really, what is one to do?
If something comes of this visit, I’ll get it out on this platform. I was very active not too long ago. Very athletic. Skiing, hiking, tennis. Hitting the gym 4 to 5 times a week. That’s all gone!!! Very depressing. But I just can’t give up!!!!
I’m so sorry. I’m very down also. I’m wishing you a good appointment that will help you. Your probably a lot younger than I am. I’m feeling desperate also.
I’m so sorry. I’m very down also. I’m wishing you a good appointment that will help you. Your probably a lot younger than I am. I’m feeling desperate also.
I’m not that young. I’m 64. Pain started in my mid 50’s. Misdiagnosed and went through 3 different surgeries. It took my 3rd neurologist to properly diagnose it was SFN. But he seemed somewhat surprised it came back positive. After that he seemed at a loss on how to treat it. Just more pills!! I’ve missed out on so many things I wanted to do in retirement. The SFN forced me into an earlier retirement than I planned on. It was a physical job I had been doing over 30 years!!!! Just couldn’t do it anymore. But I also can’t do the activities I so looked forward to doing in retirement. I now live a sedentary lifestyle that was never me!!!! I can’t even dance with my wife!!
So frustrating. So depressing. Hoping for a miracle. But I’ve become quite skeptical. Unfortunately!!!!
I’m not that young. I’m 64. Pain started in my mid 50’s. Misdiagnosed and went through 3 different surgeries. It took my 3rd neurologist to properly diagnose it was SFN. But he seemed somewhat surprised it came back positive. After that he seemed at a loss on how to treat it. Just more pills!! I’ve missed out on so many things I wanted to do in retirement. The SFN forced me into an earlier retirement than I planned on. It was a physical job I had been doing over 30 years!!!! Just couldn’t do it anymore. But I also can’t do the activities I so looked forward to doing in retirement. I now live a sedentary lifestyle that was never me!!!! I can’t even dance with my wife!!
So frustrating. So depressing. Hoping for a miracle. But I’ve become quite skeptical. Unfortunately!!!!
I’m not that young. I’m 64. Pain started in my mid 50’s. Misdiagnosed and went through 3 different surgeries. It took my 3rd neurologist to properly diagnose it was SFN. But he seemed somewhat surprised it came back positive. After that he seemed at a loss on how to treat it. Just more pills!! I’ve missed out on so many things I wanted to do in retirement. The SFN forced me into an earlier retirement than I planned on. It was a physical job I had been doing over 30 years!!!! Just couldn’t do it anymore. But I also can’t do the activities I so looked forward to doing in retirement. I now live a sedentary lifestyle that was never me!!!! I can’t even dance with my wife!!
So frustrating. So depressing. Hoping for a miracle. But I’ve become quite skeptical. Unfortunately!!!!
I understand more than I can say. My husband and I thought dancing in A senior community. We loved to dance. It’s hard not going places other friends and family want you to go. It’s hard coping with this. So sorry for you also like I said I’ll be hoping!
Hi,
I have small fiber neuropathy, with my main problem being hot, burning feet. I tried 10 acupuncture treatments with no help. Have also tried numerous drugs with no help. Very frustrating disease.
Thanks @linda818.....for telling it like it is. My feet, especially my right one would fit your description except that it is cold, not hot. The right heel has become very painful for some reason. In order to prevent falling and in order to be able to drive a vehicle, I have two sessions of MFR (myofascial release) every week. Blessings to John Barnes for figuring it all out.
Here is the link to Connect's MFR page.
connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
May you be safe, protected and free of inner and outer harm.
Chris
Thanks @linda818.....for telling it like it is. My feet, especially my right one would fit your description except that it is cold, not hot. The right heel has become very painful for some reason. In order to prevent falling and in order to be able to drive a vehicle, I have two sessions of MFR (myofascial release) every week. Blessings to John Barnes for figuring it all out.
Here is the link to Connect's MFR page.
connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
May you be safe, protected and free of inner and outer harm.
Chris
Thanks for sharing this. My sole of my feet are now hot or freezing. It varies all during the day. I also am Turing purple and red and have a few sores forming one is just a white spot. Now using a light weigh Walker when legs are very weak. Difficult to mentally except this new me.
I’m not that young. I’m 64. Pain started in my mid 50’s. Misdiagnosed and went through 3 different surgeries. It took my 3rd neurologist to properly diagnose it was SFN. But he seemed somewhat surprised it came back positive. After that he seemed at a loss on how to treat it. Just more pills!! I’ve missed out on so many things I wanted to do in retirement. The SFN forced me into an earlier retirement than I planned on. It was a physical job I had been doing over 30 years!!!! Just couldn’t do it anymore. But I also can’t do the activities I so looked forward to doing in retirement. I now live a sedentary lifestyle that was never me!!!! I can’t even dance with my wife!!
So frustrating. So depressing. Hoping for a miracle. But I’ve become quite skeptical. Unfortunately!!!!
Wow, I could have written parts of your comments. I am 63. The realization comes in increments, doesn’t it? I tried something different yesterday. I walked a 1.5 mile easy trail but I used two trekking poles. And a friend joined me, which distracted me. I had to sit down once, and my face and hair were drenched with sweat ( another SFN symptom). But I made it! I can’t say it was pleasant, but I would much rather be outside than swimming laps indoors, which is my only other form of exercise now. The trekking poles helped tremendously.
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Hi,
I have small fiber neuropathy, with my main problem being hot, burning feet. I tried 10 acupuncture treatments with no help. Have also tried numerous drugs with no help. Very frustrating disease.
I’m so sorry and so understand. Now I am getting sores and changes of colors to the bottom of my feet also. Very hard to wear docs due to swelling ankles even the doctor recommended ones. It’s a very difficult problem. I’m seeing my new neurologist to discuss results from nerve tests and blood tests next week. Do you have pain in your legs? I’ll be hoping you find something that works. So difficult.
Diagnosed with SFN 3 years ago. I’m not diabetic. I’m considered idiopathic. Pain is either extreme cold or heat. Walking feels like I’m barefoot on a gravel road!!!! Legs ache constantly like I ran a marathon. I’ve tried everything, from various meds to acupuncture. Nothing really helps. It’s an extremely frustrating disease that seemingly has stumped every neurologist I’ve seen. I’m seeing my last neurologist in January at Mass General Hospital in Boston. She has made SFN her sole specialty. If she can’t help, I’m lost. I’ll live my remaining days in constant pain.
I hate opioids, but they’re the only medication that gets me through the day sometimes. I take them sparingly as I know the addiction issues. But really, what is one to do?
If something comes of this visit, I’ll get it out on this platform. I was very active not too long ago. Very athletic. Skiing, hiking, tennis. Hitting the gym 4 to 5 times a week. That’s all gone!!! Very depressing. But I just can’t give up!!!!
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1 ReactionI’m so sorry. I’m very down also. I’m wishing you a good appointment that will help you. Your probably a lot younger than I am. I’m feeling desperate also.
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Like -
Helpful -
Hug
2 ReactionsI’m not that young. I’m 64. Pain started in my mid 50’s. Misdiagnosed and went through 3 different surgeries. It took my 3rd neurologist to properly diagnose it was SFN. But he seemed somewhat surprised it came back positive. After that he seemed at a loss on how to treat it. Just more pills!! I’ve missed out on so many things I wanted to do in retirement. The SFN forced me into an earlier retirement than I planned on. It was a physical job I had been doing over 30 years!!!! Just couldn’t do it anymore. But I also can’t do the activities I so looked forward to doing in retirement. I now live a sedentary lifestyle that was never me!!!! I can’t even dance with my wife!!
So frustrating. So depressing. Hoping for a miracle. But I’ve become quite skeptical. Unfortunately!!!!
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1 ReactionI’m 78. I’ll be thinking about you. Hoping!
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1 ReactionI understand more than I can say. My husband and I thought dancing in A senior community. We loved to dance. It’s hard not going places other friends and family want you to go. It’s hard coping with this. So sorry for you also like I said I’ll be hoping!
-
Like -
Helpful -
Hug
3 ReactionsThanks @linda818.....for telling it like it is. My feet, especially my right one would fit your description except that it is cold, not hot. The right heel has become very painful for some reason. In order to prevent falling and in order to be able to drive a vehicle, I have two sessions of MFR (myofascial release) every week. Blessings to John Barnes for figuring it all out.
Here is the link to Connect's MFR page.
connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
May you be safe, protected and free of inner and outer harm.
Chris
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2 ReactionsThanks for sharing this. My sole of my feet are now hot or freezing. It varies all during the day. I also am Turing purple and red and have a few sores forming one is just a white spot. Now using a light weigh Walker when legs are very weak. Difficult to mentally except this new me.
Wow, I could have written parts of your comments. I am 63. The realization comes in increments, doesn’t it? I tried something different yesterday. I walked a 1.5 mile easy trail but I used two trekking poles. And a friend joined me, which distracted me. I had to sit down once, and my face and hair were drenched with sweat ( another SFN symptom). But I made it! I can’t say it was pleasant, but I would much rather be outside than swimming laps indoors, which is my only other form of exercise now. The trekking poles helped tremendously.
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Like -
Helpful -
Hug
7 Reactions