Addison's Disease Support Group
Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone
I do the exact same thing. I can go and go and go...but then I need a whole day of resting. My husband gets tired of me crashing here and there. But he lets me sleep when I need it. I even started biking again, but then after 2 miles...I felt dizzy and had to rest for a bit. But the next time I took an extra prednisone 30 minutes before I rode.
I wrote for an hour and the mouse jumped to the founder of the support group. Lost everything again. :(
Yes, I've always been that way too. I'm worthless so often anymore. I feel so weak, and exhausted all the time. I see where some write abt their exercise and schedules. I don't know how they do it! I wish I had just a tiny bit of it. (praying these Dr's can do something for me in Jan ) I had a bit last week, but just didn't feel good. Then had an infection and fever, so there went what energy I did have. I've canc a bone density and labs for the Endo Dr's twice because I didn't have the energy to get ready and drive into town. That's rediculous. Normal people look at you like you have two heads. Call and canc because you're too sick to come in. Ya never know from one day to the next what to expect. I've always hated that.
I'd written to you before with answers abt the tests you looked over for me. And it disappeared and I never did rewrite. but had also written abt CFS.Were you ever diag. with it? I noticed almost everyone on this support, also have CFS listed.( I never do my others, I can't keep up with one.) Is it an early symptom of the AD or AI? The energy levels many still have. I wonder, Does being diagnosed earlier in life and treatment started have a role in any of it? You've been a long time sufferer. I've been 20 + yrs. Not knowing what was going on. And in a way still don't. Same with many others.
It seems this is a cross we have to bear for some unknown reason. It seems it runs a cycle somehow. You're right about it running your life. It sure has mine. As the exhaustion got worse each year, and more frequent, the less I could do or keep up with. I feel like I've spent so much of my life trying to feel good, or just normal.
I pretty much count on at least one day a week of nothing but sleep too, but my body doesn't always cooperate with my schedule. And I have so many things I want to do it is hard to give up a day every week. I usually feel so awful though that I have no choice. I wonder why the doctors think this is acceptable.......
Vanyel
Bird
I am finding this last week I have gotten back to hitting that wall of fatigue around 11 Am again (GRR). It had gone away on the higher doses but is coming back now and I am still at work until 1PM and a few days last week i did not even go to the store right after work as I just was too exhausted.
I take Vit D too, and yes, you are right, it is a hot topic right now. I do think it helped me be able to stay awake past 6PM a while back. I had also tried Korean Ginseng and fish oils and a few other vitamin supplements, one of which is sublingual B-12 complex which i need to buy more of.
I wish there was a meter on our bodies that showed a level of energy reserve! And would ding like a gas guage!
I am taking a special b-complex for energy
and Neonatal adrenal complex(thats bovine by the way)Hydrocortizone only helps us with one of a hundred needed items in our day, it just spikes us but does not take care of the complex body needs througout the day. I have a job in sales with 3 kids I know stress, but have been able to maintain my needs with these supplements.
Its worth checking out.
I heard a similar statement from a doc at NIH who is leading studies on patients with AD. I disagree that many people are undermedicated with steroids.