Small Fiber Neuropathy burning?

Posted by katec @katec, Mar 22 4:36pm

Hi everyone! I hope you’re all doing well with the quarantine. We are hanging in there!!

I have a question about small fiber neuropathy. As you know, my 15 year old son has it. His only symptom so far (4 years now) has been severe pain on the bottoms of both of his feet. Today he’s complaining of a burning sensation when his shorts touch a certain place on his thigh. I know SFN is sometimes called the burning syndrome, but I thought it was more of a widespread type of burning, not just a small spot (size of an iPhone). Have any of you experienced this before? Just the patchy burning? Thanks so much!!

Hi Kate @katec. I'm sorry to hear about the burning. Yes, burning encompasses a multitude of definitions with neuropathy. I've had secluded areas of burning, as in sun-burn feeling. I wore specific clothing to avoid contact. It hit my knees and around, thighs, tops of feet. I'd use ice or topicals to help settle. Also, burning pain as in tightness of the skin or ripping of the skin. I also associate burning and aching as a package deal which affects my legs severely. I hope this passes for him soon. Please feel free to ask any other questions you may have. Best wishes to you and your family.
Rachel

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@rwinney

Hi Kate @katec. I'm sorry to hear about the burning. Yes, burning encompasses a multitude of definitions with neuropathy. I've had secluded areas of burning, as in sun-burn feeling. I wore specific clothing to avoid contact. It hit my knees and around, thighs, tops of feet. I'd use ice or topicals to help settle. Also, burning pain as in tightness of the skin or ripping of the skin. I also associate burning and aching as a package deal which affects my legs severely. I hope this passes for him soon. Please feel free to ask any other questions you may have. Best wishes to you and your family.
Rachel

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…let me add that sometimes deciphering comes down to internal vs. external, sensation vs. touch. My feet would literally throw off heat where as my knees and thighs were never hot to the touch. It's a freakin' crazzzyyy disease to figure out! 😣

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@rwinney

Hi Kate @katec. I'm sorry to hear about the burning. Yes, burning encompasses a multitude of definitions with neuropathy. I've had secluded areas of burning, as in sun-burn feeling. I wore specific clothing to avoid contact. It hit my knees and around, thighs, tops of feet. I'd use ice or topicals to help settle. Also, burning pain as in tightness of the skin or ripping of the skin. I also associate burning and aching as a package deal which affects my legs severely. I hope this passes for him soon. Please feel free to ask any other questions you may have. Best wishes to you and your family.
Rachel

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@rwinnwy I have discovered something in my self. Due to this staying in home order we received from out governor . With my burning thighs I started to walk more we have 6 floors so I do all of them and the burning from neuropathy seems to be at lease more tolerable. So guess I needed to do more walking as this stretches the muscles,nerves in groin area.

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@lioness

@rwinnwy I have discovered something in my self. Due to this staying in home order we received from out governor . With my burning thighs I started to walk more we have 6 floors so I do all of them and the burning from neuropathy seems to be at lease more tolerable. So guess I needed to do more walking as this stretches the muscles,nerves in groin area.

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@lioness That's awesome!!! Keep it up!

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Hi @katec you have mentioned one of my least favorite words….burning. Burning on top of the thighs is only one of SFN's most desirable places on my body to bring that kind of pain and my least favorite. It is really sensitive if you have been sitting in the car for any length of time, or in a booth at the coffee shop and of course on an airplane. I get an MFR treatment every week to send it packing for a few days. But mostly I do it myself with stretching exercises that I invented called "Shake it out".

I do want you to be very careful if he has the torso burn. That one is like having a gas fire under your abdomen. I had to get some heavy-duty help with that one, it lasted so long and was so frightening.

May you be calm and at ease.
Chris

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@artscaping

Hi @katec you have mentioned one of my least favorite words….burning. Burning on top of the thighs is only one of SFN's most desirable places on my body to bring that kind of pain and my least favorite. It is really sensitive if you have been sitting in the car for any length of time, or in a booth at the coffee shop and of course on an airplane. I get an MFR treatment every week to send it packing for a few days. But mostly I do it myself with stretching exercises that I invented called "Shake it out".

I do want you to be very careful if he has the torso burn. That one is like having a gas fire under your abdomen. I had to get some heavy-duty help with that one, it lasted so long and was so frightening.

May you be calm and at ease.
Chris

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@artscaping I also have had burning on thighs in groin area. I told Rachael I found that more walking helped this a lot . We her in Calif are stay at home via Governor so I walk the 6 floors here or around the senior building . I surpeised myself that just plain old walking helped me so much . Bless you in all you do

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Hi Kate @katec I continue to pray for your son every day. My neuropathy pain is a burning pain that began in the balls of my feet, but has made its way up to my ankles. So far the rest of my extremities are only mildly affected. Sometimes the burning feels freezing at the same time. Starting 2 weeks ago I had to stop wearing socks because contact with even soft things hurts. It's the middle of winter here, so my feet are cold, but this coldness isn't the same as the burning/freezing pain that's always there.

Have you found anything that eases your son's pain? You mentioned once that he wasn't helped by a drg stimulator. Did it have any effect at all? Did he experience any negative effects from it? Has he tried a topical cream for this new pain? Sometimes lidocaine cream numbs my pain long enough to get to sleep. Medicare no longer covers it, but I found Uber Numb on Amazon for $16.00. When Medicare did cover it,my copay was $120.00. Uber Numb is the same 5% lidocaine as the prescription. Again, very much temporary and only takes the edge off the pain. I have an appointment with a doctor next month to look at what my options are before she does the drg implant.

Our hope is that the day will come when a cure is discovered for nerve pain. I don't know how high on the priority list neuropathy is, though I see trials for new treatments going on all the time. One can hope and pray.

Jim

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@rwinney

Hi Kate @katec. I'm sorry to hear about the burning. Yes, burning encompasses a multitude of definitions with neuropathy. I've had secluded areas of burning, as in sun-burn feeling. I wore specific clothing to avoid contact. It hit my knees and around, thighs, tops of feet. I'd use ice or topicals to help settle. Also, burning pain as in tightness of the skin or ripping of the skin. I also associate burning and aching as a package deal which affects my legs severely. I hope this passes for him soon. Please feel free to ask any other questions you may have. Best wishes to you and your family.
Rachel

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Thanks Rachel! He hasn’t been too descriptive with this new pain other than calling it burning. He had this one other time on his wrist when he was on Gabapentin, so I just assumed it was the drug. I’ll run it by his dr, but I thought this group would have an immediate answer for me and I was right!! Thanks so much! I always appreciate your input and advice!! I hope you are feeling well!!

REPLY
@artscaping

Hi @katec you have mentioned one of my least favorite words….burning. Burning on top of the thighs is only one of SFN's most desirable places on my body to bring that kind of pain and my least favorite. It is really sensitive if you have been sitting in the car for any length of time, or in a booth at the coffee shop and of course on an airplane. I get an MFR treatment every week to send it packing for a few days. But mostly I do it myself with stretching exercises that I invented called "Shake it out".

I do want you to be very careful if he has the torso burn. That one is like having a gas fire under your abdomen. I had to get some heavy-duty help with that one, it lasted so long and was so frightening.

May you be calm and at ease.
Chris

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@artscaping thank you so much for your input! He’s having that burning pain on top of his thigh just like you described. Right now it sounds more like a nuisance and just new so he’s unsure about it. I will def let him know to tell me immediately if his pain/burning travels anywhere else, especially to his torso!! This is all new to us, so I really appreciate your thoughts!! Thank you!

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@jimhd

Hi Kate @katec I continue to pray for your son every day. My neuropathy pain is a burning pain that began in the balls of my feet, but has made its way up to my ankles. So far the rest of my extremities are only mildly affected. Sometimes the burning feels freezing at the same time. Starting 2 weeks ago I had to stop wearing socks because contact with even soft things hurts. It's the middle of winter here, so my feet are cold, but this coldness isn't the same as the burning/freezing pain that's always there.

Have you found anything that eases your son's pain? You mentioned once that he wasn't helped by a drg stimulator. Did it have any effect at all? Did he experience any negative effects from it? Has he tried a topical cream for this new pain? Sometimes lidocaine cream numbs my pain long enough to get to sleep. Medicare no longer covers it, but I found Uber Numb on Amazon for $16.00. When Medicare did cover it,my copay was $120.00. Uber Numb is the same 5% lidocaine as the prescription. Again, very much temporary and only takes the edge off the pain. I have an appointment with a doctor next month to look at what my options are before she does the drg implant.

Our hope is that the day will come when a cure is discovered for nerve pain. I don't know how high on the priority list neuropathy is, though I see trials for new treatments going on all the time. One can hope and pray.

Jim

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@jimhd Your prayers are so appreciated!! I cannot thank you enough for them!

He had a DRG trial last summer. He didn’t get any relief from it (no ill effects either other than with the trial device it’s awkward to move around with the wires and tape) and it baffled the drug rep and pain doctor. He would feel the sensations of the DRG in all the right places (where he had pain) when they would adjust it but it never provided any pain relief. It was disappointing, but it was just added to our long list of things tried for pain relief that failed. So far, we still haven’t found anything. Insurance is still reviewing his case for IVIg, so even though it’s taken a long time, at least they haven’t said “no” yet! If he does get approved, who knows when he could start it with the quarantine.

We have some lidocaine that’s been prescribed in the past that I will offer him if it bothersome tonight when he’s winding down. This quarantine is tough on him because he can’t go on walks or hikes around the neighborhood because it just hurts so much, but he has all this energy and desire to do stuff. Since it’s supposed to stop raining this week, we will heat up the pool for him but since he’s a kid he’ll want to run around it, wrestle with his brother, jump around etc so he’s in pain then too. Oh well, one day we will find something that works for him!

I hope you have great success with your DRG, if that’s the route you choose to go. Everyone deserves to not be in pain and do the things they want to do!!

Stay safe and busy during this quarantine!!

REPLY
@jimhd

Hi Kate @katec I continue to pray for your son every day. My neuropathy pain is a burning pain that began in the balls of my feet, but has made its way up to my ankles. So far the rest of my extremities are only mildly affected. Sometimes the burning feels freezing at the same time. Starting 2 weeks ago I had to stop wearing socks because contact with even soft things hurts. It's the middle of winter here, so my feet are cold, but this coldness isn't the same as the burning/freezing pain that's always there.

Have you found anything that eases your son's pain? You mentioned once that he wasn't helped by a drg stimulator. Did it have any effect at all? Did he experience any negative effects from it? Has he tried a topical cream for this new pain? Sometimes lidocaine cream numbs my pain long enough to get to sleep. Medicare no longer covers it, but I found Uber Numb on Amazon for $16.00. When Medicare did cover it,my copay was $120.00. Uber Numb is the same 5% lidocaine as the prescription. Again, very much temporary and only takes the edge off the pain. I have an appointment with a doctor next month to look at what my options are before she does the drg implant.

Our hope is that the day will come when a cure is discovered for nerve pain. I don't know how high on the priority list neuropathy is, though I see trials for new treatments going on all the time. One can hope and pray.

Jim

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@jimhd One thing I mentioned before there is a cream you can buy O.TC Topricin cream it's for neuropathy and fibromyalgia I use it before bed It works They have it at CVS or online

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@katec

Thanks Rachel! He hasn’t been too descriptive with this new pain other than calling it burning. He had this one other time on his wrist when he was on Gabapentin, so I just assumed it was the drug. I’ll run it by his dr, but I thought this group would have an immediate answer for me and I was right!! Thanks so much! I always appreciate your input and advice!! I hope you are feeling well!!

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Thank you. My hope is that these hot spots disappear for him and are isolated. If you don't already, I recommend journaling symptoms and dates. I'm assuming you're still waiting on insurance approval for IVIG. Let me know otherwise, please. Good luck!

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@rwinney

Thank you. My hope is that these hot spots disappear for him and are isolated. If you don't already, I recommend journaling symptoms and dates. I'm assuming you're still waiting on insurance approval for IVIG. Let me know otherwise, please. Good luck!

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@rwinney Rachel, we are still working with insurance regarding the IVIg. They’ve been pretty difficult (losing forms, saying they’re incomplete, etc) but our doctor has been great in following up with them. I’m actually supposed to call insurance today for an update so fingers crossed!!

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@katec

@rwinney Rachel, we are still working with insurance regarding the IVIg. They’ve been pretty difficult (losing forms, saying they’re incomplete, etc) but our doctor has been great in following up with them. I’m actually supposed to call insurance today for an update so fingers crossed!!

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🤞

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Hello again. I want to make sure that everyone is doing o.k. today. It does seem like the CoVid-19 is closing in more today. A little sunshine might help. In case you didn't know, Connect has a new group providing reputable information about the virus. There is also a place to make you smile and one to make you happy and……..and……and……..
https://connect.mayoclinic.org/group/covid-19/
Be healthy and whole in body, mind, and spirit.
Chris

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