Hi Anne,
I've had to resign from my job because of several problems which have been plaguing me for years and I was only working part-time too. I haven't applied for disability as my husband works and we earn above the means testing threshold for benefits.
Fatigue for me has been a long standing problem - for many years from when I was in my twenties. Although endo's always implied, (as they mumbled something under their breath), they didn't think it was related to either CAH or the treatment I was sceptical. Lack of cortisol, the fundamental underlying problem in CAH - hellooo - not related, I think there could be a possibility.
(Sometimes I've tried to explain the kind of fatigue I've had and I describe it in two ways, like total exhaustion stemming from my chest area pushing me to the floor from where I cannot get up and just want to stay there forever or exhaustion for which sleep does nothing to help - where you wake just as tired or more tired than when you went to bed).
Also more recently after getting my old medical notes I noted that my androgens (Testosterone, DHEA-s and Androstenedione) were always very low - undetectable levels for years and years - again no connection in my endo's calculation. I know that this area of low androgens has only of recent years been investigated more and research is showing that energy can improve with increased levels of DHEA-s and testosterone. For the past ten months I have been taking DHEA and other things and my androgen levels have now come into normal range. My energy levels have now improved significantly. I get these other medications compounded and they are unfortunately quite expensive but very exactly controlled dosages.
Other problems I've had have been musculoskeletal problems - mostly related to lax (loose) ligaments in ankles, fingers and other joints. Some sources suggest that ligament laxity can be related to adrenal and cortisol replacement issues. Also have had plantar fasciitis which took a long time to get under control - very painful!
I'm generally feeling so much better all 'round, so whether it is solely from not working or from the extra hormone replacements or a combination of both I don't know. I do however know that my CAH sister who is younger than me (in her 40's) still works but is killing herself doing so. She definitely needs to chill out a bit and opt for being 'poorer' to help her overall life quality. I worry for her so much.
