Hi, I'm new here in Addison's - never even heard of it before Monday.

I finally got my test results and they confirmed everything for the doctor, at least I get some peace of mind in that I am NOT going mad nor is all this just a symtom of my imagination, but I am scared. Is this curable, am I always going to feel this crap - although I feel so much better already having started the steroids, has anyone ever completely 100% recovered from this or will be an on-going battle for the rest of my days.

Also, does anyone know where I can get some DHEA. I have the steroids etc but my doc recommended some DHEA, does anybody know a website or even a reliable brand?

Sorry, this is all a mess, brain is fuzzy, I hope it makes sense to someone.

Thank you.

Siucra

I've tried DHEA - try a health food store or a GMC. I felt no different on the over-the-counter drug other than I broke out a little. My doctor did stress that I should try it.

Hi Suc-

I am happy to tell you that I have lived with this "disease" or "illness" for over 10 years now. (After going through hell and I'm sure you can relate).

I virtually live a normal life. No one would know I have a problem unless they saw the pill bottles or read the medical bracelet I wear. Once I recovered my strength and stabilized on the meds - life was better than it had been in years! Keep searching the net for websites- there are some great ones in addition to this one. Best of Luck-
PVS

Hi JJ & PVS,

Thanks for taking the time to reply, it's comforting to know that there are fellow sufferers out there. I do think that this is very much a *silent disease*, I certainly had never heard of it before or met anyone who had it. I've spent quite a bit of time trawling the web looking at related sites, so I am learning a lot about it.

One thing I am curious about though, has anyone adjusted their diet or found that certain foods make their condition worse or trigger really bad attacks? Whar are those foods or does it vary from person to person?

Thanks http://www.healthboards.com/ubb/round.gif again.

Siucra

In response to your DHEA question, my doctor has prescribed Pregnenolone 30mg because she says that straight DHEA can create too much testosterone for women and that Pregnenolone is safer for us. I too was diagnosed on 4/23/03 and having a hard time finding a program that works. Also noticing that PMS changes all the rules.

Hi there,

I can certainly relate to all of this. I was just diagnosed four days ago (on 6/3/03) and I am scared to death. I am a stay-at-home mother of 4 kids ranging in ages from 2 to 7. I want to live a very long and healthy life but all of the sudden, there is something challenging that. I was also told that I have Schmidt's Syndrome which a lot of the people who post here may have but it scares me so much. I just hope that I can reach a nice old age before my body destroys itself. Unfortunately, I don't have much advice for you other than to say, "I know how you feel." I can say that I wish you all of the best and I will say a prayer for you.

PegZ

Hi

Thanks for the replies, I'm still struggling with all this and haven't found a happy medium at all. I do feel a lot better since starting the steroids and the rest of the treatment, but feel I am fighting a losing battle with the weight issue and that really doesn't help my disposition, which hadn't been that sunny recently!

The fact that most people haven't heard of this 'disease' and kind of roll their eyes when you start the list of complaints and hear the 'I am tired' statement doesn't help matters either, so I just stay quiet and state yet again that I'm busy and will catch up with them later.

I do feel that I'm starting to distance myself and feel lost cos you can't really 'compare notes' with people and share the good days or the crap days, or have a good old moan without sounding crazy or like a hypochondriac. I'm really lonely and wonder if I'll ever have a normal life, or that anyone will understand the crap I have in my day to day, and my bad days are really bad right now and more frequent.

If anyone has the secret as to how to lose that awful spare tyre that has appeared "Please Tell Me", I'm begging you...! I go to see my doc in 2 weeks and I'm gonna beg him to help me with the weight issue - I walk 5 miles a days at a fast and furious pace and am still gaining, NOT FAIR!

Thanks.

Depressed and fat Siucra.

I have too lived with addison's disease for over 12 years now. I have one beautiful child who is 6 and healthy, and am pregnant with my second. I also play ice hockey and excercise regularly. The only thing with that is I take an extra half of pill before I work out or play a sport. It helps alot for after my games I used to be so tired, I couldnt drive myself home almost. Then I read up on how to keep up with my athletics and it works. I do not gain weight, and after a while you should feel normal. It takes a while, but the most important thing to remember, (a few actually) Is have faith in your medication, it takes a while but you will feel better. (took me a year, but they found me almost dead) and Drink lots of water. hydration is most important for your blood pressure. I have one of the best endos in the united states. He knows his stuff! Good luck and rest!