Small Fiber Neuropathy burning?

Posted by katec @katec, Mar 22, 2020

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!!

@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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Yes when my SFN flares the right side of my right hand and the 3 fingers go numb and burn . I have tried Neurontin and Lyrica they proved to be a small help. My best relief comes from lorazepam staying calm and letting my body rest for a short time. I wish your son the best of luck and I am sure someone will soon solve this disease stay strong .

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Thank you so much for your response. His “flare” has gone away for now. Makes me wonder if it’s stress related (all that’s going on right now) or just the disease taking its course….I’m sure some of both!

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@mikeoc

Yes when my SFN flares the right side of my right hand and the 3 fingers go numb and burn . I have tried Neurontin and Lyrica they proved to be a small help. My best relief comes from lorazepam staying calm and letting my body rest for a short time. I wish your son the best of luck and I am sure someone will soon solve this disease stay strong .

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@mikeoc For the burning, buy a jar of "Wise Men Healing Balm," on Amazon. It is 100% Frankincense and Myrrh. It cools the burning down very well. I use it for my severe foot neuropathy. Lori Renee

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@mikeoc

Yes when my SFN flares the right side of my right hand and the 3 fingers go numb and burn . I have tried Neurontin and Lyrica they proved to be a small help. My best relief comes from lorazepam staying calm and letting my body rest for a short time. I wish your son the best of luck and I am sure someone will soon solve this disease stay strong .

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@mikeoc

When that day comes, I'll be in the long line of pain sufferers to get a prescription for sure! (:-

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I have idiopathic small fiber PN, affecting both feet, legs up to my groin, and a little in my hands.
Most of my symptoms are severe burning when my skin senses a pressure, such as wearing shoes or even socks.
I have, like almost all of you, tried numerous medications, alternative treatments, devices, supplements, etc. Nothing seemed to work much, or at all. In fact, because I developed swelling in my legs (a fairly common adverse reaction to Lyrica), I have started to cut down on that, without any noticeable change in my pain level. the swelling has gotten somewhat better.
Lately, I think I feel a little better.
I noticed that when my feet were burning, I developed a red color to my skin that was actually hot to the touch. For example, I still ride my bike, and wear bike shoes without socks. The redness, etc. developed exactly in the area of my feet that was touched by my shoes.
I think I may have a form of erythromelalgia, although my neurologist doesn't seems totally convinced. I found some papers where the authors tried using a topical cream of various concentrations of ketamine and amitriptyline.
My doc wrote a prescription for ketamine 5% and amitrriptyline 5%. It has to be made by a compounding pharmacy and is very expensive.
Yesterday, I rode my bike for 4 hours without much burning. Previously, I couldn't even do that for 1 hour, so, so far, so good.
I hope this isn't another example of my imagination, or a coincidence, etc., causing me to come to the wrong conclusion (I'm sure that has happened to many of you)
Does anyone else have experience with this topical?

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@jeffrapp I haven’t used it but I was at a meeting with the now disbanded Minnesota Neuropathy Association where a member shared that it helped them. @artscaping maybe able to share some information.

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@jeffrapp

I have idiopathic small fiber PN, affecting both feet, legs up to my groin, and a little in my hands.
Most of my symptoms are severe burning when my skin senses a pressure, such as wearing shoes or even socks.
I have, like almost all of you, tried numerous medications, alternative treatments, devices, supplements, etc. Nothing seemed to work much, or at all. In fact, because I developed swelling in my legs (a fairly common adverse reaction to Lyrica), I have started to cut down on that, without any noticeable change in my pain level. the swelling has gotten somewhat better.
Lately, I think I feel a little better.
I noticed that when my feet were burning, I developed a red color to my skin that was actually hot to the touch. For example, I still ride my bike, and wear bike shoes without socks. The redness, etc. developed exactly in the area of my feet that was touched by my shoes.
I think I may have a form of erythromelalgia, although my neurologist doesn't seems totally convinced. I found some papers where the authors tried using a topical cream of various concentrations of ketamine and amitriptyline.
My doc wrote a prescription for ketamine 5% and amitrriptyline 5%. It has to be made by a compounding pharmacy and is very expensive.
Yesterday, I rode my bike for 4 hours without much burning. Previously, I couldn't even do that for 1 hour, so, so far, so good.
I hope this isn't another example of my imagination, or a coincidence, etc., causing me to come to the wrong conclusion (I'm sure that has happened to many of you)
Does anyone else have experience with this topical?

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Good evening @jeffrapp. I am @artscaping, and Chris. About 4 years ago, I was diagnosed by punch biopsy with Small Fiber Neuropathy with involvement in my hands, wrists, and arms as well as legs, head, and other areas. My topical was a compound including ketamine and other ingredients plus lidocaine. It came in a small jar for about $75 and worked hard to relieve the pain so that I could sleep. It also helped with issues under the heading of Chronic Myofascial Pain Syndrome or CPS. Unfortunately, the lidocaine compound worked for about 15 minutes even with the addition of other elements by my neurologist.

It was at that time that a kindly gentleman who was opening a medical marijuana dispensary sort of became my cannabis guide. He let me experiment with quite a few available topicals until we found one that was better than the lidocaine. I am still using it today and have moved through the CBD: THC ratios to the highest THC and the best option for me. It is a 1:3 CBD/THC by a company called Papa and Barkley and is $25 for a small jar.

It seems to me after tracking results, that everything I tried worked really well in the beginning. In time, I always have to up the pain ingredients, use more at any one time and more frequently. So it is not just your imagination.

Regarding the burning,,…that has been quite a hurdle to jump. Yes, my feet get red and even purple. My life partner always rubs them for me or I do a few minutes of the yoga pose, "legs up the wall". Every morning…..along with the stretches and home myofascial release therapy (MFR), I try to get ready for the day with yoga and mindful meditation. My therapist is working on the burning and suggested that I move about more. Sitting in the car for a few hours, or in a chair without lumbar support can really lite the fire in the thighs. Maybe you really took off like a rocket on that bike.

The one burn area that is a red light for me is the one behind your torso and underneath your abdomen. It reminds me of one of those gas fireplaces with low flames across the rocks. My memory tells me that the torso/abdomen pain is a bit scary.

That's an introduction…..and an update. Ask questions and I will attempt to find answers for you. Share your thoughts and suggestions.

May you be free of suffering and the causes of suffering.

Chris

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@lorirenee1

@mikeoc For the burning, buy a jar of "Wise Men Healing Balm," on Amazon. It is 100% Frankincense and Myrrh. It cools the burning down very well. I use it for my severe foot neuropathy. Lori Renee

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@lorirenee Ive been using Topricin cream it is for the burning also . It works also but I like Frankincense and Myrrh I,ll have to try it

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@artscaping

Good evening @jeffrapp. I am @artscaping, and Chris. About 4 years ago, I was diagnosed by punch biopsy with Small Fiber Neuropathy with involvement in my hands, wrists, and arms as well as legs, head, and other areas. My topical was a compound including ketamine and other ingredients plus lidocaine. It came in a small jar for about $75 and worked hard to relieve the pain so that I could sleep. It also helped with issues under the heading of Chronic Myofascial Pain Syndrome or CPS. Unfortunately, the lidocaine compound worked for about 15 minutes even with the addition of other elements by my neurologist.

It was at that time that a kindly gentleman who was opening a medical marijuana dispensary sort of became my cannabis guide. He let me experiment with quite a few available topicals until we found one that was better than the lidocaine. I am still using it today and have moved through the CBD: THC ratios to the highest THC and the best option for me. It is a 1:3 CBD/THC by a company called Papa and Barkley and is $25 for a small jar.

It seems to me after tracking results, that everything I tried worked really well in the beginning. In time, I always have to up the pain ingredients, use more at any one time and more frequently. So it is not just your imagination.

Regarding the burning,,…that has been quite a hurdle to jump. Yes, my feet get red and even purple. My life partner always rubs them for me or I do a few minutes of the yoga pose, "legs up the wall". Every morning…..along with the stretches and home myofascial release therapy (MFR), I try to get ready for the day with yoga and mindful meditation. My therapist is working on the burning and suggested that I move about more. Sitting in the car for a few hours, or in a chair without lumbar support can really lite the fire in the thighs. Maybe you really took off like a rocket on that bike.

The one burn area that is a red light for me is the one behind your torso and underneath your abdomen. It reminds me of one of those gas fireplaces with low flames across the rocks. My memory tells me that the torso/abdomen pain is a bit scary.

That's an introduction…..and an update. Ask questions and I will attempt to find answers for you. Share your thoughts and suggestions.

May you be free of suffering and the causes of suffering.

Chris

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I apologize. I did not read your whole post, but stopped at "punch biopsy". What the heck is that? I've never heard of it. I usually would talk to Mr. Google, but I'm spending too much time on here, lol. Also, I have wondered about the causes of my chronic pain. I do have some degenerative disk/nerve issues–cervical–before injections into the optical lobes of my brain, I often felt like the back of my head was going to explode. I have osteoarthritis here and there, but nothing that explains my chronic allover pain. Sometimes I feel like it would hurt if someone touched my skin, like when you have a high fever, and others my back feels like it is on fire, seriously on fire, but when a doc pushes on it no increased pain. OK, I did just read your entire post. I have never tried or been suggested to try the CBD/THC route. Guess I am still somewhat skeptical.

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