Sorry, just getting back to this, I was really disheartened by my situation for a bit. I am not technically an independent contractor, but I have opted not to make a case of this, I have not had good experiences in the past. I had been missing a lot of work due to exhaustion, but taurine seems to be helping a lot with my fatigue, sleep issues and anxiety.

I let my coworkers know about the possibility that I may ask for help with the physical aspects of our job, and they are all very nice about it and never draw attention to it. As it stands, my manager has barely spoken 20 words to me in a year, so things seem to have worked out for the best. My coworkers and I joke about it lightly - I am lucky to work with a good group. I sent them some links and they all 3 read them with interest.

If I need to lift something heavy, I lift it a few inches off the ground a few times and then it's easier to pick up.

Thanks for the info and suggestions Jan, you have always been amazing to be so helpful to all of us lost lambs on the web :)

I will keep your suggestions on file for future reference.

I have not been tested for the SCN4A mutation - my testing was in 2004, and I had an "unknown" mutation, could that be it? I have it on my list to ask about the status of that at my next specialist appt. My symptoms do seem to align with potassium sensitivity, though.

Country: US

Amanda, if you have your test results you can email them to me and I'll look up the association.

If you can get your doctor to write a prescription for an occupational therapist, they can come to your workplace and evaluate your daily tasks, then show what you can do to make it easier on your muscles. Sometimes they suggest some adaptive equipment or do a functional capacity evaluation to determine how much you can lift, how long you can stand, etc. It will also give credibility to your challenges with coworkers and supervisors.

This describes the FCE - it's good to have, even if you just use it as a baseline in case you get injured later:
Functional Capacity Evaluation

I'm glad the taurine is helping!

Jan

Type of Myotonia: Thomsen's

Country: US