u/Hot-Grapefruit3711

I noticed there is some confusion for people because it does not necessarily always get explained right after diagnosis and I had trouble with this at first too (diagnosed 3 years ago)

For instance, we will often experience heavy limbs, nausea and dizziness, as well as brain fog and severe fatigue due to low cortisol. I get this in the evenings mostly. It's not worrying, it does not come with vomitting or low BP and no intense stomach pain or inability to walk. It means I have used "all my spoons" and need to rest.

Over time I learned to not take low cortisol sympyoms as a reason to worry.

Going into crisis is very different.

Would have liked for someone to explain this to me and spare me some freakouts early on😉

I also noticed online some people who say they have had a lot of crises mean something else apparently because they are fine after resting without an injection or medical attention. So that might also be confusing for people to read.

Modern medicine is bashed so often and there is a distrust of doctors and meds and while some skepticism is definitely warranted, I wanted to give a shoutout to doctors and nurses who know what they are doing and save lives every day.

I hear things like; ' Go to a naturopath and drink herbal tea, doctors are useless' or ' I would NEVER take hormones' etc

Well thank goodness for synthetic hormones and for the fact I did go to a doctor.

Here I am, so incredibly grateful to be alive after almost dying 3 years ago from an adrenal crisis and getting diagnosed with PAI.

Grateful humankind made a synthetic form of cortisol in the 1940's without which we all would have died right after being diagnosed (or without being diagnosed)

It is crazy to me to think of all the pieces that had to fall into place for me and most of you reading this to be alive today.

Someone had to invent cortisone. Someone had to recognize our rare illness and treat it in time.

🙏