I have pretty intense pain pretty much 24/7 also. Every month or so it seems I get a break enough to at least wash my hair. I take strong meds, but my body seems to metabolize them like water - and always has.

It gets very loney and depressing lying in bed for days on end. It is demoralizing to have to urinate in a trash can when I can't get to the toilet. I watch a lot of tv to distract me unless I get a migraine and then I just whimper in the dark.

I think there are more of us that people realize since we are basically shut ins. My pain is specifically from my spine and down my left leg which feels like people are holding a constant barrage of sparklers against my skin. I always have head pain, but the level of that varies more than my back. I get about 5 head cracking migraines a week now. Sometimes I just want to get an ax and cut off my leg or at least break my spinal chord. I know that sounds terrible, and I won't be doing either, but desperate, neverending pain causes desperate thoughts.

Do you have an autoimmune disease by any chance? It sounded like you miight. I desperately hope one day they find the answer and you get some peace.


Suzanne