Hi Jazzmine and welcome to the group. Hopefully we can help answer and support you through the ups and downs of this disease. I've been Dx'd about 18 years now. I've been with the same endo all 18 years, but my primary worked very hard to find an endo who was treating patients with Addisons , and really knew Addisons, not just a big diabetes office.

I've never had the swelling your talking about but my primary checked me every month for that. Unfortunately I don't know why. I'm guessing you could get this info at any of the sites you Google for Addisons but these are the the 4 I like best. NIH - National Institute of Health, NADF - National Adrenal Disease Foundation, Webmd, and Wikipedia. I know most people love the UK site but I can't remember the site.

As for #2, I've woken up tired every morning since almost a year before being dx'd. I asked to be tested for 9 months before I got the test. I was able to work the first 14 years of being dx'd, it did get harder the last two years because I ended up with multiple illnesses. I've been disabled now 4 years. But if you only have Addisons with good dosing and light, probably very light exercise you can lead a normal or close to normal life. There are a lot of tricks to live with this disease. If you go back quite a few pages, maybe 20-30 or so, and read what GASH posted about turning around her health. I used to feel better by 9:00 am for years, but because of digestive issues, partially from long term steroid use, I never make plans now before 11:00 am. It's from the nausea. Steroids are hard on your stomach. Make sure you eat at least a cracker with your first dose if you take it while in bed.

Ups and downs can be normal until you get your dosing right for you. How much HC do you take and when do you take it? The other part of ups and downs with Addisons is what happened to me over the last 5 days. We had weather up to and over 100 degrees. Anything over 80 degrees that is constant starts my Addisons. Then on top of that I got a UTI, so more stress on the body. So i stress dosed to cope with those other two factors that were burning through my HC to quickly. This is a disease that makes you aware of what your body needs if you listen. Education is really important.

Yes, I've had the nausea off and on. I would look and see if nausea is from a lack of cortisol on one of the web sites.

I'm sorry your having a hard time of it right now. Please feel free to ask any questions you might have. Doctors don't always have the time to discuss some small things you can do to feel better. But we do. Hoping to talk to you soon.

Sorry I wrote a book !

Thanks Lynn. I really appreicate it. I am supposed to be on 20 mg of Cortef twice a day, Due to swelling we can't go over 22 mg per day, so I am taking 15 mg at 5 am and then the rest at 10 am. The crazy timing is due to the fact that my circadian rhythm is completely OFF and I am backwards which is why my coritsol is so low in the morning and so high at night. I am using sunlight therapy to get it back to normal but because of this, I don't dare take Cortef past 10 am or I am too wound up at night and can't sleep. I had to figure this out myself through trial and error.
It could be possible the neasea is because right now I can't go any higher due to swelling and also it causes very over active bladder.
My biggest symptoms prior to diabnosis was the nausea. Then when I got on Cortef it disappeared and only recently reared it's ugly head again, but not every day.
Aso, I was wondering, I don't know your age but do you take any other hormones other than cortisol?
One last question. I see someone on here weaned off Cortisol. I didnot know if was possible to cure AD and so I wonder how is it possible for someone to wean off it?
Thank you.
Chris

Generally speaking with Addisons you dump your sodium quite easily, and retain potassium. It sounds like your retaining sodium if your having water retention. But it could be a number of things. What blood tests have they done? Have they done the blood work where they check your liver and kidney function? My primary does this once a year.

The reason that Latrece convinced her doctor to wean her off steroids was because she thought she was wrongly diagnosed. And her adrenals have been working as she has come off steroids. Their is no cure once you have a good diagnosis. You have to take steroids for life.

I had a medical menopause in my early 40's trying to stop migraines. So no HRT, no DHEA. I only take HC and Fludrocortisone. I just turned 59.

You talk about the sleep thing. I can't sleep at all on prednisone but I'm fine on HC, even large doses when I'm sick. I've had my sleep rhythms mess up a few times. I read this on another Addisons site. It's worked for me. But yours might be a little to complex for this. Several people told me to save a very small dose to take at bed time for about a week. I take 30 mg a day, so I would save 2.5 mg to take at bedtime. They told me that you can't sleep when you have no cortisol/steroids in your system. I have had to do this 3 times, but it did work. It's stopped me waking up at 2 or 3 every night too. That is the hour most steroids are gone.

I haven't looked up your alternative treatment yet. But I will by tomorrow. Have a good night.

Lynn
Once again i am in misery with nausea and im scarec. No vomitting nyst unbearable nausea.
Is this how u get in rhe am? I cant move till it passes.

Yes, almost everyday. I never throw up but the nausea just keeps me in bed until it passes. I was able to work on morphine in unbelievable pain from migraines for years, lots of years. But the nausea just puts me down and out.

If I feel it coming on I find if I can get just a few little bites of toast and a few sips of tea, then use a Phenegran suppository or take a Promethizine (Phenegran is better for me) plus use a heating pad on my abdomen, plus 2.5 mg of HC it's better in a half hour to an hour.

I've only had this for 4 years, since I got sepsis. Definitely would talk to the doctor about this. Have you got nausea meds yet? The Phenegran is sometimes the only thing that gets me through.