Thank you both for your replies. No, I have had nothing done yet. The rheumatologist saw me for 5 min. As soon as he heard me say the word "burning" he insisted that it was small nerve peripheral neuropathy, because it is a finding with fibromyalgia. I did ask him about the mild spinal stenosis that the MRI showed in 2012, and he basically said you could do an MRI on 100 people and see those same findings. It doesn't cause what I'm feeling.

Even if I do have PN, I agree that I think more testing any work that needs to be done to 1) confirm that I actually do have PN and not something else (or possibly have PN in combination with something else and 2) confirm what type I have if I do have it, 3) tests for other underlying things like pre-diabetes, vitamin deficiencies, thyroid etc. and treat those if needed.

I was very unhappy with the way the rheumatologist handled the situation.

I think I will also pursue seeing a spine specialist, if nothing else, just to not leave that stone unturned. Maybe I have some things going on from lumbar stenosis and also some things from PN. I will also go on the daunting quest of trying to find a neurologist who will take the time to do the appropriate testing and work with me to figure this out.

What keeps nagging at me is that I have not experienced the symptoms in the typical pattern that I have been reading about: burning in the toes and feet first, then working up the leg. My first symptoms have been with the back of my thighs, then pain in the heels after standing and walking, and now the pain over the thigh and butt bones from pressure being applied. It doesn't fit the typical sock and glove pattern I have been reading about. However, I do realize that the way PN presents can be atypical and different for every person. That is why I was asking for some feedback on experiences that you guys have had.


I do know that standing makes the back of my legs and bottom of my heels hurt more. Is that a common finding in PN? that standing makes things worse?

Thank you again for taking the time to respond to my concerns. It is much appreciated.


Sharon