- CASE FILE
Thirteen years ago, I developed hot flashes and within a month my clothes became very painful against my skin.
ABOUT THIS CASE FILE
Thirteen years ago, I developed hot flashes and within a month my clothes became very painful against my skin. It did not matter what type of fabric it was; it was still very painful. I can not tell you how many thousands of dollars I spent on fabric and having clothing tailored. It had to be very brief shorts and sleeveless shirts. Still very painful against my skin. I am a disabled Marine Veteran and I visited my VA neurologist who ran numerous tests without any results. Lots of different medications different classes and a lot off label medications without success. I visited other neurologist outside the VA, and they were as perplexed as the VA doctors. I was referred to a VA endocrinologist who ran more tests and suggested supplements. Still no results. I saw physiatrist, Pain Management specialist and psychologist. My VA Neurologist in D.C. applied for me to go to the NIH Undiagnosed Diseases Program they asked to have more testing, though still was not accepted into the program. I was finally referred to a University of Maryland Medical Center / VA Baltimore neurologist specializing in neuromuscular conditions, including myasthenia gravis and diabetic and other peripheral neuropathies. Lots more tests occurred some targeted DNA, skin biopsies, tilt table, sweat test and more medications still no effective treatment.
Over the years I did lots of research not only medical but on fabrics too. I finally found a fabric from a company in Italy (EUROJERSEY). It is very breathable and lightweight. Helps some but still a lot of pain when the fabric rubs against my skin. The pain is from head to toe. Satin sheets do not even help. I do not sweat so heat exhaustion is a concern. I carry various Mission cooling products with me all the time just in case I get overheated. I do not feel the cold so must be very careful with hypothermia.
A diagnosis of Allodynia was determined it refers to central pain sensitization (increased response of neurons) following painful, often repetitive, stimulation. Allodynia can lead to the triggering of a pain response from stimuli which do not normally provoke pain. Temperature or physical stimuli can provoke allodynia, which may feel like a burning sensation, and it often occurs after injury to a site.
As far as medications are concerned, I have taken a lot of them in different classes. Sure, I could take multiple pain medications but would leave me so incoherent that I would be out of it most of the time and to me that is not living. Living with an invisible disability is a challenge you look fine but in reality, you are not. It may not be life threatening but is life altering at least for me my family and community.