Hello.

ONSET: I developed burning neuropathy in the aftermath of a difficult hip revision surgery. I was on multiple serious meds for about three months, from not being on meds at all. Using them only as indicated, I was on Valium, Oxycodone, Oxycontin, Clonidine, and various stomach and muscle relaxants. I found that when I tried to stop the meds, I had withdrawal from Valium and I couldn't stop the Oxy. I stopped the short acting but couldn't stop the Oxycontin without help. I was put on Suboxone for nine days and quit. This caused an enormous amount of emotional and physical stress. Then, two weeks after stopping the opiates altogether, I took Macrobid for a UTI. Then I went on fire.

It lasted for a week. Then went. I spent the year after surgery with muscular pain and muscle spasms. Spasms in my face and interior places! I also had hot flashes that I was told were menopause. I had temperature intolerance and would get rigors when cold. I still had no idea this was neuropathy.

Then I got some really bad news in the summer, AND I took antibiotics for acne (doxycycline). The burning came back. It lasted about three weeks then passed. The other symptoms remained constant. Then, almost a year after my first onset of burning pain, I took another Macrobid for a UTI. It is considered one of the safer meds. The burning returned after one pill. It has been seven months.

DIAGNOSIS: My family doctor believes I have mitochondrial dysfunction and suggested ALCAR, ALA, etc. So I have been take strong doses of nerve oriented supplements. I take methylated B6 as I have MTHFR.

PROGRESSION: The burning stayed for about two months. My mouth burned and I drove with ice in my mouth for weeks. I used cold packs to sleep. I spent two hours a night in the tub and walked for hours in an indoor pool at my gym.

Then it changed. It became less hot. I spent weeks at temperature intolerance. First it was cold that upset me for weeks, then heat. Then it was any kind of contact. Even the fan upset my skin. I have fleece clothes and blankets. Then I felt methylated. I felt like my whole body ate a cough drop and was blooming with cold blast. These stages last for weeks and then morph into something new. Sometimes there is overlap but usually I don't go backwards.

I had two good weeks of just discomfort, then my most recent flare introduced tingling and stinging. It's bad. It's in my mouth, vagina, back, soles of my feet, etc. It is covering more area than any of the other symptoms.

After a few months, my flares became more spaced apart. At this point they are every two weeks. They last about three days and are generally whatever I am feeling intensified. I get waves of the pain. They last a few minutes then it passes. I can get six or so an hour.

STYMIED: Multiple systems are affected. This is what is confusing. I had it in my mouth, eyes, inside my chest, and my genitals. I have had stabbing pains in my feet and felt bugs crawling on me (stopped). And then I get large areas of skin that, in the beginning, swelled, and turned red and emitted heat. Now those areas are whatever I am going through.

Now I have verifiable reasons for nerve damage. I have Charcot Marie Tooth and I have spinal stenosis. But an EMG showed no impinging on a nerve and CMT doesn't seem to present this way.

My questions:

1). Does this sound familiar to anyone?
2). Does the progression seem to be a healing, or:
3). Does neuropathy jump systems and compartmentalize like this?

Thank you for your patience.

I found a neuro on the website for Peripheral Neuropathy and will see him in six weeks. Until then I have an appointment with my pain doc for something until then. I don't want Lyrica ever again and am considering Nortriptyline. I haven't had meds apart from CBD for this and am at the end of my rope.