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 was diagnosed with Addison's in 1999. Ever since, my health has declined more and more over the years. Being on steroids for so long has given me steroid-induced diabetes, as well as severe osteoporosis. I'm on about 10 to 15 different drugs, including Lortab and Fentanyl to combat my severe pain. Aside from hydrocortisone and fludrocortisone, I also take omeprazole to combat what the steriods do to my stomach, simvastatin, atenolol for hypertension, metformin, and citalopram for severe depression. This is just to name a few.
After educating myself to the point where I almost know more than my doctor(s), and reading case after case it seems that for some reason my Addison's is far, far worse than anyone else. I wish I had never been diagnosed. The treatment is worse than the disease (at least for me). I say this knowing that had I not been diagnosed I would have died within a couple of years (according to the doctor who diagnosed me). It is so bad that I have seriously considered suicide. I don't think in terms of living day to day, but closer to hour to hour. Each day is fraught with pain, exhaustion to the point where I don't get out of bed. Sleep is the only respite from reality, and that is further complicated with a rather rare sleep disorder where I'm awake for about two days, then asleep for two days. How could my Addison's be so different from everyone else? I take the same medications, and then some for its surrounding issues.
The only thing that has proven relief is marijuana. The Lortab and Fentanyl I'm on doesn't touch my pain, and I'm looking to get off of both. But marijuana relieves the pain, both physical and emotional, stimulates my appetite, calms the stomach, etc. I live in Oklahoma, so there's practically no chance of being put on medical marijuana, that I know of.
If there is anyone else out there who feels similar, I would like to hear from you. I would also like to hear from other Addisonians with their two cents on this topic. I'm very tired of living, and I'm only 36.
After educating myself to the point where I almost know more than my doctor(s), and reading case after case it seems that for some reason my Addison's is far, far worse than anyone else. I wish I had never been diagnosed. The treatment is worse than the disease (at least for me). I say this knowing that had I not been diagnosed I would have died within a couple of years (according to the doctor who diagnosed me). It is so bad that I have seriously considered suicide. I don't think in terms of living day to day, but closer to hour to hour. Each day is fraught with pain, exhaustion to the point where I don't get out of bed. Sleep is the only respite from reality, and that is further complicated with a rather rare sleep disorder where I'm awake for about two days, then asleep for two days. How could my Addison's be so different from everyone else? I take the same medications, and then some for its surrounding issues.
The only thing that has proven relief is marijuana. The Lortab and Fentanyl I'm on doesn't touch my pain, and I'm looking to get off of both. But marijuana relieves the pain, both physical and emotional, stimulates my appetite, calms the stomach, etc. I live in Oklahoma, so there's practically no chance of being put on medical marijuana, that I know of.
If there is anyone else out there who feels similar, I would like to hear from you. I would also like to hear from other Addisonians with their two cents on this topic. I'm very tired of living, and I'm only 36.
deleted_user
Have you been checked out for other AutoImmune issues? That could be why you feel so bad. My best friend currently has 3 AutoImmune diseases and she feels terrible every day. That might explain why you feel the way you do. Just a thought....
deleted_user
Hi Sorry to hear you are feeling so ill. I was diagnosed with Addisons in 2007 when I passed out whilst on holiday when I was physically sick. No one knew at the hospital what was wrong was unconscious and they could not get my bp up. They then discovered my steriods in my bag and immediately gave me an injection of hydrocortisone which brought me round. I have had 1 more addisons crisis since then, they are so frightening the drs do not understand the feeling you have when you are becoming unconscious so the fear I now have of being physically sick is driving me to distraction. I cannot setttle and if i hear anyone is sick i run a mile. I also have diabetes due to steriods and have to take insulin 4 times a day. life just seems to be such a struggle at the minute no energy and constantly feeling sick then i panick which does not help. Does not seem to be anything the drs can do as you say we know more about the disease than they do. I do hope you feel better soon.
deleted_user
hi, I read your story and my heart just went out for you. I felt some common ground and felt compelled to share my story. I have had Addison's for appx. 2 yrs now. I am 37 and was the picture of PERFECT health my whole life! I was even fit and just as strong or stronger than all men I knew from daily vigorous workouts. I was able to work most my life and did, making decent money. Then my life changed around ALL THE SUDDEN! I was sleeping most my days, thrashing about with sweats and nausea. This went on for 6 months before I was officially diagnosed. Not to mention sitting at a clinic for hrs in this condition once a week before they realized I REALLY was sick! I was put on Prednisone and Fludrocorisone and felt much better. However I would scan stories on this site and noticed that Addison's just isn't the same for everyone. Many are able to work, take care of children etc. Not me....I sleep a lot and am unable to commit to certain things for fear of nodding out on the spur of the moment, can no longer workout, and can no longer work. My life as I knew it was gone!!! Then I was diagnosed with a pituitary tumor that with a recheck has grown...that saga continues. I also developed borderline diabetes I'm now convinced has worsened by my symptoms and lastly my worst curse was Cushing's disease. This almost killed me and I put on at least 50 lbs adding to all my ailments. I was constantly fighting to stay alive and in the shape I was in I don't know how I did it??? I too developed severe depression. I din't feel whole. I felt like a walking disease that could no longer live my life as I chose. I was DEVASTATED!!! I went through denial even went as far as convincing myself all the labs and doctors were wrong. I actually was expecting for me to wake up one day as if it were truly a nightmare. Then I started to change the way I looked at things and everything changed around me.I started to accept my reality and most importantly my limitations and started to see what I could do rather than all I couldn't. I starting thinking of how I could do all I love. I just simply got out of bed and proclaimed I can do everything through Christ that strengthens me. I also learned just how understanding all my friends are. I am now on two more medical journeys. I choose to except what God sends me and try to make a difference with it. It helps me to cope and accept. Finally I will share I have a BF that has four auto immune disorders and seeing her go through more than I can imagine with a amazing attitude helps me get through. I know you can't help how you feel but I once was like you in depression and I made it....I got out. I will be praying for you!
deleted_user
i feel your pain bro..i'm on about 15 different meds...i have addision's and a crushed pituatory gland..i only got diagnosed onlyi a year ago. i woke up out of a coma a year ago and they told me i had addison's ..it's been crazy man so many meds..mentally i'm fucked right now can barely get out of bed..the only thing that really helps me is vikidin and xanex.i know it's not the best thing to take these drugs but it helps..i've been thinking of smoking some weed lately...i'm always here to talk man.
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