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 am sorry about this - I have read a Psyiatrist is an MD who works with people with neuropathy and arthritis. They do PT- Massage- cold therapy- and acupuncture. Perhaps try this? Best wishes
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.
I’ve heard those poles helped. Unfortunately I can’t get out I. This sunshine without being covered head to toe. I don’t have the strength would love to try it when it is cooler! I have sjogrens and skin must be covered everywhere. So I’m hoping for cooler weather and hoping no more coyotes in my neighborhood to kept me from walking occasionally. I do walk I. Side and now have added a Walker to my routine. So trying to get stronger. Loved your post.
I am sorry about this - I have read a Psyiatrist is an MD who works with people with neuropathy and arthritis. They do PT- Massage- cold therapy- and acupuncture. Perhaps try this? Best wishes
I have idiopathic sensory-motor PN. I've been seeing a physiatrist for a little over year. He's good. He's the fellow who administered my EMG and gave me my diagnosis. By his own admission, there's not much he can do for me now, other than consult with me from time to time. But you're right: a physiatrist is an MD (mine is a neurologist; I don't know if all physiatrists are neurologists). His office is spacious: what seems dozens of flourescent-lit rooms, each looking like a mini-gymnasium. Obviously, his stock in trade is body rehabilitation through PT. Many of his patients are like me: PN patients. But, as I mentioned above: when you've a disease like PN, there's only so much a physiatrist can. I say that, and yet I still value him as reference point whenever my PN proves too confusing. Which is every other day. 🙂
Thanks, but for starters this article was in 2002. Second, in the first paragraph "There is no treatment to reverse the neurologic deficit of this disease manifestation....." I've tried several light therapies. All have failed. At this point I'm just looking to decrease the daily pain, even partially. When the pain flares up during the day, what do I do??? Neuropathy Meds don't work. Pain meds don't work. Until the nerve pain calms down by itself, I am not a happy camper. To me it's all about the PAIN. What to do when the nerve pain flares up.
Has anyone tried compounded drugs for foot pain with several meds included? Also, I have tried voltarin gel 1 percent. Can't take anymore drugs! I'm maxed out. It's helped somewhat with foot pain! Maria.
What sort of foot pain? Can you be more specific? Is your pain definitely linked to your neuropathy? I have foot pain, but it's not part of my PN (according to my podiatrist). My left ankle is riddled with arthritis, and both feet have severely fallen arches. I wear orthotics for the fallen arches (which help, but they're no cure). For my arthritic ankle, I have a Velcro brace that I'll wear when the pain gets to be too much; otherwise, I do daily ankle limbering exercises. But more to your point: I will occasionally use Diclofenac gel. You probably know: Diclofenac is like Voltarin. I use it only sparingly, because, like you, I've too many medications. Have you been to a podiatrist? If your pain is part of your neuropathy, that would be one thing. If it's not, then maybe a podiatrist could suggest something that would give you relief – without adding another medication!
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!!!!
We are new to this SFN ( still waiting to be fully diagnosed) have you looked into a Psyiatrist ? They are MD’s that work with people who suffer from neuropathy and or arthritis… doing PT, massage and likely even acupuncture…. I have heard it helps some people… we plan to look into deeper once we have the diagnosis.
Best wishes
Sheila and Doug
Has anyone tried compounded drugs for foot pain with several meds included? Also, I have tried voltarin gel 1 percent. Can't take anymore drugs! I'm maxed out. It's helped somewhat with foot pain! Maria.
Hi. I'm on a compounded topical lotion for my foot and hip pain due to SFN. It helps for my feet. It's a combination of amitriptyline, ketamine and lidocaine. It works great for me at night. I put it on my feet and then put on socks and my pain subsides so I can sleep better. Unfortunately it's expensive and my insurance does not cover it. I pay $108 for a small amount in a pump container. The container is probably 1/2 the size of a voltarin tube.
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.
Good evening @dancing1, it sure looks like we both experience similar color changes and temperature differences. Glad to meet you. My MFR therapist seems to know more about what is going on inside our feet and what it means. I will have to ask her again for an explanation.
What sort of foot pain? Can you be more specific? Is your pain definitely linked to your neuropathy? I have foot pain, but it's not part of my PN (according to my podiatrist). My left ankle is riddled with arthritis, and both feet have severely fallen arches. I wear orthotics for the fallen arches (which help, but they're no cure). For my arthritic ankle, I have a Velcro brace that I'll wear when the pain gets to be too much; otherwise, I do daily ankle limbering exercises. But more to your point: I will occasionally use Diclofenac gel. You probably know: Diclofenac is like Voltarin. I use it only sparingly, because, like you, I've too many medications. Have you been to a podiatrist? If your pain is part of your neuropathy, that would be one thing. If it's not, then maybe a podiatrist could suggest something that would give you relief – without adding another medication!
Ray, something here caught my attention. Do your feet hurt only when you’re walking, or even when you’re at rest? If it’s the latter, then it’s probably neuropathy pain. Flat feet with good orthotics shouldn’t be that painful.
Just me playing devil’s advocate again!
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I am sorry about this - I have read a Psyiatrist is an MD who works with people with neuropathy and arthritis. They do PT- Massage- cold therapy- and acupuncture. Perhaps try this? Best wishes
Sheila
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2 ReactionsI’ve heard those poles helped. Unfortunately I can’t get out I. This sunshine without being covered head to toe. I don’t have the strength would love to try it when it is cooler! I have sjogrens and skin must be covered everywhere. So I’m hoping for cooler weather and hoping no more coyotes in my neighborhood to kept me from walking occasionally. I do walk I. Side and now have added a Walker to my routine. So trying to get stronger. Loved your post.
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1 ReactionHi,
I have idiopathic sensory-motor PN. I've been seeing a physiatrist for a little over year. He's good. He's the fellow who administered my EMG and gave me my diagnosis. By his own admission, there's not much he can do for me now, other than consult with me from time to time. But you're right: a physiatrist is an MD (mine is a neurologist; I don't know if all physiatrists are neurologists). His office is spacious: what seems dozens of flourescent-lit rooms, each looking like a mini-gymnasium. Obviously, his stock in trade is body rehabilitation through PT. Many of his patients are like me: PN patients. But, as I mentioned above: when you've a disease like PN, there's only so much a physiatrist can. I say that, and yet I still value him as reference point whenever my PN proves too confusing. Which is every other day. 🙂
Ray (@ray666)
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3 ReactionsHas anyone tried compounded drugs for foot pain with several meds included? Also, I have tried voltarin gel 1 percent. Can't take anymore drugs! I'm maxed out. It's helped somewhat with foot pain! Maria.
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1 ReactionHi, Maria
What sort of foot pain? Can you be more specific? Is your pain definitely linked to your neuropathy? I have foot pain, but it's not part of my PN (according to my podiatrist). My left ankle is riddled with arthritis, and both feet have severely fallen arches. I wear orthotics for the fallen arches (which help, but they're no cure). For my arthritic ankle, I have a Velcro brace that I'll wear when the pain gets to be too much; otherwise, I do daily ankle limbering exercises. But more to your point: I will occasionally use Diclofenac gel. You probably know: Diclofenac is like Voltarin. I use it only sparingly, because, like you, I've too many medications. Have you been to a podiatrist? If your pain is part of your neuropathy, that would be one thing. If it's not, then maybe a podiatrist could suggest something that would give you relief – without adding another medication!
Ray (@ray666)
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Helpful -
Hug
3 ReactionsWe are new to this SFN ( still waiting to be fully diagnosed) have you looked into a Psyiatrist ? They are MD’s that work with people who suffer from neuropathy and or arthritis… doing PT, massage and likely even acupuncture…. I have heard it helps some people… we plan to look into deeper once we have the diagnosis.
Best wishes
Sheila and Doug
-
Like -
Helpful -
Hug
4 ReactionsHi. I'm on a compounded topical lotion for my foot and hip pain due to SFN. It helps for my feet. It's a combination of amitriptyline, ketamine and lidocaine. It works great for me at night. I put it on my feet and then put on socks and my pain subsides so I can sleep better. Unfortunately it's expensive and my insurance does not cover it. I pay $108 for a small amount in a pump container. The container is probably 1/2 the size of a voltarin tube.
-
Like -
Helpful -
Hug
6 ReactionsThank you. I will give it a try! Maria.
Good evening @dancing1, it sure looks like we both experience similar color changes and temperature differences. Glad to meet you. My MFR therapist seems to know more about what is going on inside our feet and what it means. I will have to ask her again for an explanation.
May you be content and at peace.
Chris
PS....I'll be back.
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4 ReactionsRay, something here caught my attention. Do your feet hurt only when you’re walking, or even when you’re at rest? If it’s the latter, then it’s probably neuropathy pain. Flat feet with good orthotics shouldn’t be that painful.
Just me playing devil’s advocate again!