Small Fiber Neuropathy burning?

@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

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!

@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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Be healthy and whole in body, mind, and spirit.
Chris

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 .

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!

@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

@mikeoc

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

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?