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!!

Interested in more discussions like this? Go to the Neuropathy Support Group.

@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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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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