Seeking support, new to this nightmare

Talked with the endocrinologist and she didn't seem to concerned when I told her it went away when I stopped using the lipoic acid. I have found if I drink lots of water is 'dilutes out' the urine and the smell goes away. I figure it is a metabolic by product of the action of lipoic acid. I'm going to look into it some more.

I have an unusual diagnosed cause .. a foot operation which activated my high immune system and I am … hopefully recovering slowly. My immune system went in to protect my feet but instead starting killing the nerves in my feet. So possibly the trauma of your foot damage caused the same issue as me as trauma of an op can do this. Just a thought worth investigating. Thinking of you. Xxx

Thank you again for all of your feedback. No diagnosis as of yet. Both feet 24/7 pain and burning. Still in the boot for stress fractures yet nothing has changed in my opinion.
When I lay down my thighs go numb and tingly as well. I await blood work results and a brain MRI is to be scheduled. Navigating the insurance is a job I find gives me ample opportunity to work on my patience!
I am so tired from lack of sleep and also have fear of the unknown. I had an eye event whereby the vitrious detached however remain grateful thus far my retina did not. Specialist said common for age 65. Again, WHAT IS HAPPENING! Thank you for your kindness. All the best to you all.

Has a neurologist suggested or done a nerve and muscle biopsy? I had similar symptoms that began in my right foot and eventually started in my left foot also. After many tests, doctors and eight months of extreme pain I was put on permanent disability retirement by my employer. My local neurologist referred me to UCSF and one of the doctors there was fairly certain of the diagnosis. She had written her thesis about small vessel vasculitis and after tests and a nerve and muscle biopsy. the diagnosis was confirmed. This is just a thought I had when I read some of your symptoms. Best of luck to you and I hope you can find help soon.

I hope there is a simple explanation that will be uncovered with some bloodwork. In the meantime, you could purchase some cream to help the foot pain. My pain diminished greatly when I got a diagnosis of small fiber neuropathy, and started taking the appropriate medicine (Tegretol in my case). But that was six years after I started my journey with two - yes, two - walking boots. You don’t want to wait that long! Try some CBD cream on your feet. Others find Vick’s vaporub helpful. There are other suggestions.
After my skin biopsy showed SFN, I realized there had been many precursors to the pain symptoms that really made me pay attention. I could think back at least 10 years prior to the fractured heels, strange issues like scalp and deep breast itching, burning tongue, lots of tendinitis and muscle pain while leading an active lifestyle.
We are on this journey with you! We’ve all been where you are!

Do you know if they tested for Vitamin deficiencies? They can cause some significant symptoms in the feet and legs.

I had tingling, some numbness and some burning…not severe….in feet, that was eventually attributed to post covid syndrome. Tests indicated no neuropathy. What I did run across in research was a phenomenon on burning skin….it’s like a syndrome. Some people get it in their mouth. Just something to consider. I hope your doctors can get you a diagnosis and relief.

Well, the plot thickens. First diagnosis is Raynauds. Niacin, ginkgo and wool socks. Bloodwork results pending to rule out a list of other culprits. The boot is moot! I knew that was useless. Grateful for your caring comments. This is a painful rollercoaster .

Sorry to hear that the plot has thickened @ehope but maybe it will help you find some more answers. There is a discussion on Raynaud's that might be helpful.
--- Raynaud's Syndrome: Anyone want to talk about Raynaud’s?: https://connect.mayoclinic.org/discussion/raynauds-syndrome/

There are also a lot of related discussions and comments by members that might be helpful. Here is a link to the search results - https://connect.mayoclinic.org/search/discussions/?search=Raynaud%E2%80%99s.

How well I remember 8 years ago when, after a ski fall, a cascade of pain gushed into my lower body. This was six months after the fall, and I thought I had pretty well healed up. I was out weed-wacking, then, after I came back inside is when all the pain erupted. It was like nothing I had ever experienced. I tried to get an immediate appointment with my PCP. Of course, we all know how that usually goes. The point is, It has been 8 years, and I have been throught so many procedures, seen more docs than I can hardly remember. Believe it or not, I have actually come to live with and accept this pain. Not that I am happy about it, but I am at the mercy of pain specialists who give me ten or fifteen minutes and then tell me to make another appointment in six to eight weeks. I have come an understanding and partial acceptance of this pain (at age 76). I will keep searching for somone who can correctly diagnose my pain and prescribe the correct treatment. Unless the Lord calls me home first. Wish you well on your own pain journey.

I swear, I have lost faith in anyone called a "specialist"!!
I have spent so much money to hear "No one knows what causes Neuropathy, and no one can cure it"