New here - my first post though I've been lurking for a long time and have found great information and solace here. Thank you.

I have flares that seem to be very different from what other people write about and I wanted to find out if anyone has had the kind of experience I've had.

I have neuropathic pain on the right side of my torso and my neck/face plus mild numbness and tingling in both feet. This has come on very insidiously over three years, starting with a strange little pain in my right armpit.

My GP originally thought I'd pulled a muscle. I kept going back to her because it was getting more and more painful, so she did a bunch of blood work and found my B12 was very low - 171. This was almost a year after I initially presented with the little armpit pain.

I took B12 shots and got the level up to 1200, but at the very same time I was boosting the B12 my clinical symptoms got much worse - including a lot more burning pain along a line under and above my right breast, then spreading around the back along those same lines. Since then, it has moved up the right side of my neck into my jaw and mouth, up and down my right back so it's about all affected, and recently down into the waistline and abdomen. My feet have also gotten worse (slight numbness, tingling) but so far no pain. I continue to take B12 and my levels remain at the top of the range.

I call my flares "firestorms" because they are a blistering attack of pain and neurological dysfunction. I have an extreme exacerbation of pain in all the regular places but also in some new place. For example, the pain has just recently settled into my upper back. I had a firestorm where all the old places hurt like heck and this new place also really hurt for the first time. After that, the pain was established in the new place as well as the old. They all hurt all the time, but not at the heightened level of the firestorm.

My firestorms appear to be the means by which the neuropathic pain spreads into new places. During a firestorm I usually get a steep drop in blood pressure. My thinking is affected and sometimes I'm really out of it. My eyesight gets blurry. When the firestorm dies down, I'm exhausted and usually sleep for hours.

I can go for weeks, sometimes even a couple of months, without a firestorm, and then I can have them in clusters. They are more frequent in the summer.

My neurologist says she's never seen anything quite like it -- in fact she's mystified by my overall symptomology, and she specializes in neuropathy! I was lucky because I happened to have a firestorm one time when I was seeing her so she knows these episodes are real. She just doesn't know what is causing them.

I have spinal stenosis in a few places, but this is clearly a process not something mechanical. EMG and EEG were pretty normal. I have a little tremor so she thinks I might have early Parkinson's but it has not gotten worse over the 3 years. The Cymbalta I take clearly causes some shaking because tremor is worse right after I take the drug.

Anyway, sorry to have gone on so long, but when I saw this "flare" topic I finally had to post and ask for your help. I'm beginning to get early signs of neuropathy on my left side, so I guess this process is going to go on until it gets my whole body. (sigh) And as I'm finishing up this post a firestorm is starting up. (double sigh)

Thank you all for reading this. Greatly appreciated.

Natalie
Female
67yrs old