Addison's Disease Support Group

Here's a couple of websites you can check out: http://www.nadf.us/index.htm and http://www.addisons.org.uk/info/ma... As to how people feel, it varies very much by individual, although I've noticed from reading posts that many people struggle with periods of fatigue. It's something you'll figure out with experience. You'll want to get yourself prepared with an emergency injection kit (prescribed by your endo); great directions are availble on the addisons.org.uk site and you can get an emergency instruction card from them or NADF.

To answer your question about having more than one rare disease, i think the answer is dependent on the cause of your diseases. I myself have two rare diseases (AD and a prolactinoma), but the two are not related. However, my AD appears to have been caused by autoimmune disease, which puts me at higher risk to develop other problems, such as diabetes, thyroid issues, etc.

I hope this helps. This forum is great for sharing experiences and helping you figure out if what you are experiencing is "normal". Best of luck to you with your new diagnosis.

hi, jdillard! i like your glasses ... :)

i'm sorry as hell to hear that you have addison's, too. you're another young diagnosis, like me, and it's not the most exciting news in the world to get. i'd much rather have been told that i had some rare disease where i could eat anything i wanted and would *always* be a size six, or that i over produced some type of rare hormone that made people want to hand me money for no reason at all ...something really rare and mind-boggling, that no one else in the world would ever have, but (sigh) no ... instead i have addison's. i have to look at the positive side, however - mine was found *just* before it was too late, so that's a good thing. i'll always be grateful for that.

mine is actually secondary, which means that i wasn't born with it, but i developed it *after* i was born. in my case we think it was from prednisone (the steroid), which i had to take every once in awhile for asthma, to help my breathing stabilize. i didn't know this at the time, but whenever you're on steroids they take over for your adrenal glands, or 'give them a break,' if you will. when you stop taking whatever dose of steroids you're on (in my case i was almost always tapered off, so my last doses were very small) your own adrenal glands kick back in and do their own work again. UNLESS, of course, you're *extremely* rare and special, in which case they don't. just like that, for no reason known to anyone - they form their own little picket line and strike, but they don't tell anybody. and of course - and this is perhaps my *favorite* part of the whole thing - the only thing that i can take for my steroid-induced addison's is ... STEROIDS. gotta love it. what exactly are you on right now? i'm on cortef, but it's all very similar.

is your addison's primary or secondary, do you know? secondary isn't *technically* called addison's, it's called 'secondary adrenal insufficiency,' but it's loosely referred to as addison's, even by many doctors and endocrinologists, so i just refer to it as 'secondary addison's.' (i don't mean to be so obnoxiously technical and fact-filled, i just thought that i would fill you in on all of this since you're new to the club; that way you'll know all the lingo while you're on the boards, talking to different doctors, or what have you. i had to figure this all out the hard way, and looking like an idiot(!), so i try to help people avoid that if at all possible.

if you do happen to have secondary addison's, the good news is that it IS possible to go into remission at some point, which is a wonderful thought, and something to hope for. if it's primary, however, i'm pretty sure that it's not possible at all, unless there's some exception that i've not heard of. i'm obviously not a medical professional by any means, but i *have* done my homework in this area BIGtime. one thing you will find, quite sadly, is that you have to be COMPLETELY EDUCATED about this disease, because most doctors and nurses aren't. obviously your endocrinologist will be familiar with it, but that's where it usually ends, in my experience anyway. i go to a major university hospital that i chose to switch to BECAUSE of the ranking of their endocrin department, and even MY endo isn't as educated about the disease as i had hoped. i might be her only patient with the disease, and i live in CHICAGO, for the love of god! as for my other doctors, i know that i'm definitely their only patient with it, and the only patient they've ever had with it. when i've gone to the emergency room for different issues, i take a poll of how many medical workers are familir with the disease, and it's *shocking* to know how many are. the most common answer that i get is, 'addison's disease ... i remember the name from med (or nursing, whichever) school, but that's all i remember,' followed by, 'isn't that something dogs get?' it's not a great feeling, knowing that you're more educated on your rare adrenal disease than the MD treating you, but if you learn enough about it and keep some info on you to share with said doctor, you can: help yourself, educate whoever's taking care of you, AND help whoever they happen to treat in the future who are in the same boat that we are. all in all, it's not that bad.

but enough of my un-called for rambling, and onto your actual questions. first of all, it's strange, but it seems like a LOT of people on these boards have more than one rare disease. i think it might be because addison's is technically an autoimmune disease, so our immune systems are obviously not as strong as they should be.

this kind of leads me right into your second question, actually - obviously i can only answer it for myself, but it seems to me that MANY others on this board are often saying the exact same thing, which is - YES, unfortunately, addison's does cut into my daily life.
i'm always lacking energy, i never feel as if i've gotten enough sleep, and it's rare that i feel 'normal,' or like my old self.

one side effect of having addison's is that we lose our sodium much faster than we should (we pee it out too quickly), which can leave us craving salty foods or drinks. one thing that i've found that really helps me with this is drinking gatorade, specifically the purple G2 kind (i think it's grape?); for some reason it makes a HUGE difference. i also eat peanut buttery things when that happens, which is SO weird to me since i was never a big fan of peanut butter before. it helps, though! along those lines, we're supposed to lookout for cravings of black licorice - in almost all of the information i've read, it's said that if you're craving black licorice you need to call your endo right away because something is really wrong. strange, huh?

all in all, though, besides the fatigue, or maybe even equal to it, my biggest problems come from the steroids that i have to take to replace the cortisol loss every day. at one time i was on two meds - cortef AND florinef - are you on both, or just one? just one is enough, believe me. my face gets so hot from the steroids that it's awful, and bright red on top of that. they also affect my appetite; i literally went for over a year once where i almost never felt hungry at all, and could hardly eat anything, although i still gained some weight. other times i'm SO hungry i could practically peel paint off of the walls just to snack on it, and yet sometimes my appetite is completely normal.

i also want to warn you, though keep in mind that it's been a little over three years now, that i have unfortunately gained some weight from the steroids. i don't think that it would be quite as much, however, if i didn't have the other health problems that i do right now. my other rare disease is called rsd. or crps. it's a pain disease that can be caused by any number of odd things. mine stems from a tumor in my spinal cord which is actually the original cause of my pain issues, although it and the addison's together are *not* the greatest of combinations, as they both seem to exacerbate the other...


ok, i think i've sufficiently written you a small book here, but i'm hoping that at least something i've rambled on about has helped.
please don't hesitate to let me know if you have any other questions, or if there's anything i can do for you.

i hope this finds you feeling well!
xoxo, misa

wow Misa, I can really sense a lot of frustration in your post. I'm sorry to hear that you were diagnosed at such an early age too.

JD, one of the important takeaways is that YOU need to be educated on this disease because few medical professionals outside of endocrine are familier with it. I've learned through experience to be prepared for an ER visit. I have an emergency card in my wallet with emergency instructions for treating AD, and I also carry the emergency injection and oral medication if I have to go to the ER. I had a Addison's crisis during my first visit to the ER for vomitting because my doc ignored my repeated requests for steroids because he was too busy focusing on my possilbe food poisoning. My biggest problem with him is that he didn't listen, and if steps weren't taken in time I would have paid the price with my life. This is a sucky disease to have, but I try to make the most of the hand I've been dealt.

When one first hears about adrenal failure . . . Addison's . . . and adrenal insufficiency . . . it all is a jumble. Do some research on-line and you will learn a lot. Many family practice physicians do not understand it because it is rare and they hardly ever run across a true Addisonian. Even Endrocronologists don't understand. I went to Mayo Clinic and the doctors throw adrenal patients into the Secondary Adrenal Insufficiency bucket when they cannot prove primary adrenal insufficiency. So what, the results are the same.

There are some good books out there, one is Adrenal Fatigue what I found useful. Another one is living with Predisone. Taking steroids will change you . . . physically, emotionally, and mentally. Even if you are on a rice cake a day diet, expect to gain weight and your face will change. It just happens. You may go through a real image shock as you have always seen yourself in the mirror one way and then one day you look like someone else. You may have some anger from the steroids and resentment from the situation that you didn't choose. Talk to your family and friends. Caregivers that are loving and kind can help you through. If you have a partner, keep communicating. I was married when first diagnosed and for two years and my husband (a doctor) couldn't take the fact that I couldn't work 16 hours a day anymore and he left me (on the floor crawling to the toilet to throw up) and moved in with his secretary. We have since divorced. No everyone can handle the chronic illness. He never talked to me about my illness and the burden he felt. Talk to your partner or friends and get them support too. It is a long process. Now, all this may sound a bit of a downer, but you need to know that Addison's can change you life in a very good way. You will start learning more about yourself and your health. You can start taking better care of yourself. You learn what really is important to you. You understand that you can become sick very fast (to the point of dying) and that does something to you that nothing else can. You learn to appreciate the day and living in the moment. You also learn how important your family can be. You can take some of the downtime while you are managing your energy and you can invest it into yourself (reading, writing, watching movies) and that can be a positive. Yes, Addison's changed my life but it was one of the best things that ever happened to me.

WOW! I just found this site and cant believe it! I too was in the hospital several weeks back, My heart rate was so low they thought it was heart and eventually after 5 days , diagnosed me with Cortisol deficiency.
So we sound to be in the same place, I just posted a blog to just about the same as yours! so Look forward to learning more with you. scary stuff, but I am grateful there is a solution..please keep in touch if you gain any if you can share with me.