I get traveling numbness and odd nerve pains. It comes and goes. Never have gotten to the bottom of it. My PCP thinks my messed up gut is sending faulty fight/flight signals to my brain or it is a chemical imbalance (many mood regulating chemicals in the gut) causing physical anxiety symptoms. She also called it peripheral neuropathy but I don't think that was an official diagnosis, just an educated guess. I saw a neurologist who did a bunch of tests but never really put a name on it and just said something is irritating my nerves. Said he sees a lot of people with similar symptoms (who don't have IBD) but he and his colleagues don't know what it is.
Others have shared similar experiences. I also take Lialda, actually the generic version now, but could not prove mesalamine to be the culprit. Every time I tried to stop, I would begin getting IBD symptoms. I think I'd need a good 4 months without the Lialda, as some others who've had a reaction have reported it taking that long for the neurological symptoms to subside.
I can say for sure that the first time I ever experienced anything like this was when I began treatment for my first flare with colozal. Not sure if it was the UC or the meds. If it is the meds, I don't have any choice but to step up to a more powerful medication, which I am not ready to do. If you get a doctor's opinion I'd love to know what they say.
Diagnosed Proctosigmoiditis (UC) February 2015
Current Meds: Lialda 1.2gm 2x daily, duloxetine, rowasa as needed, Curcumin, VSL3 occasionally, One a Day Multi-Vitamin
Did SCD for about 2 years but lost willpower. Want to get back to it at some point.