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Small Fiber Neuropathy burning?
Neuropathy | Last Active: Dec 18, 2022 | Replies (56)Comment receiving replies
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?
Replies to "I have idiopathic small fiber PN, affecting both feet, legs up to my groin, and a..."
Don't know if this is any help. I take ALA for my SFN which helps tremendously. But at times my feet would still burn, when wearing socks. I only wear socks that are mainly merino wool. Noticed that they only burn when I wear cheap pairs of merino socks. When I use good brands such as Darn Tough (if want strength) and Smartwool (if want warmth), they do not burn. I got seduced recently by the great ads and designs of Bombas merino socks. Again my feet burned in them and I always launder socks before wearing them. Back to the other brands.
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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