- CASE FILE
Severe painful "spasms" occur randomly all over my body increasingly over the last ten years: no definite diagnosis or working treatment yet
ABOUT THIS CASE FILE
10 years ago this October 2019 it began with severely painful abdominal spasms that brought medics to my home and sent me to the ER. Over the last 10 years, these spasms increased in occurrence and spread all over my body: in my chest, neck, shoulders, arms, legs, feet, sides, hips, and back. Now they are constant, only varying in intensity throughout each day. Along with these symptoms, I have regular migraines, sensations at times of burning and cold at the same time, and periods of nausea and sometimes vomiting, unable to keep food down for several days at a time. I've had 8 or so CT Scans, two MRI's (one for low back which seems to be a separate issue: degenerative discs), in-and-out of ER 13 times, a couple gasterologists, a rheumatologist, 6 different neurologists (different medical centers: the last one declaring fibromyalgia), tilt table test for autonomic neuropathy (diagnosed as "mild"), small fiber neuropathy test (negative), upper/lower GI, tests for food moving through stomach and intestines (bile) (negative), electromyography (twice: both negative), migraine treatments (unsuccessful as yet), and a multiple number of medications (pain meds, fibromyalgia meds: all except opioid pain meds had intolerable negative side effects). I've a couple doctors who said it was all in my head, another who suggested exploratory surgery; but most admitted they were baffled. I suffer daily with a great deal of pain, off-and-on, as intensity of these spasms varies randomly throughout each day. I am presently under the care of doctors in my third pain clinic. So far, medications they've had me try have not worked. I currently use minimal amounts of oxycodone pain medication just for short times of taking the edge off the pain; but I am in pain continually, never free of it entirely. I use a wheeled walker to walk anywhere, within our apartment, too. Most days I am either in bed or in a recliner. There is presently a plan to embed a burst stimulator (SCS) that will help with the low back pain (due to degenerative discs), but will not help with the spams and pain. There is no current plan to address that. My quality of life is frustratingly low; I am used to being very active, formerly a domestic violence advocate - of which I am a survivor. I greatly miss working, going to church, and especially being with my children and grandchildren - even now having a first great grandchild. I feel stuck and unable to do the simple, everyday things of life. It's hard to believe I have some condition that cannot be accurately diagnosed and treated!