Small Fiber Neuropathy burning?

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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@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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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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@ilovedoodie

CBD and the other related products aren't for everyone, but lots of people sing their praises. A punch biopsy is, in my limited knowledge, an extraction of muscle or nerve or skin that is analyzed to give a diagnosis. It's not as scary as it sounds.

Jim

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@ilovedoodie

Most of the tests are no big deal, except for one I had at the neurospecialist. He stuck a large needle into the muscle of my leg, in 4 places starting at my hip and ending with the top of my foot next to my toes. After the needle went in, I had to flex that muscle. Now that one was painful. Except for the one in my foot - because of the numbness from neuropathy I didn't feel it at all. The fact that I had no sensation was the scary part. I'm not diabetic, but my father was, and he had to be really careful with his feet for that reason. I never walk without solid sole shoes bc I'm afraid that I'll step on something and not know it.

Stay safe and stay home.

Jim

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I know a man who lost feeling in both feet, just randomly, no apparent cause. He can no longer drive or operate anything that requires feeling in feet. His wife is constantly with him when they go out. On a separate note, I was experiencing neuropathy in my left hand that my PC assumed was due to my diabetes. I had a cervical MRI due to severe pain in the back of my head like it was actually going to blow up. PC referred me to an awesome pain doc who is very knowledgeable regarding which nerves and areas of the spine cause symptoms in various areas of the body. The injections he has been providing in the occipital lobe of my brain (not so fun) due to the above issues have completely removed the neuropathy in my left hand which I also mentioned to him. Unfortunately, not all doctors are created equal, and often the specialist field you are referred to is not the one that ends up helping. Frustrating, huh?

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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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