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
Vanyel
Ok, this was a really bad day. I think I might have had an adrenal crisis. This has happened to me several times now and it scares me. I was wondering if any of you had any similar experiences.
I seem to get into real trouble when I pick up some bug or stomach problem. It usually comes over me while I'm sleeping - I start to feel sick in some way - like last night I got heartburn really bad, started getting queasy. I got up and took some TUMS and tried to go back to sleep. It developed into a massive headache and nausea. Then I got cold which is really unusual as I am usually hot and sweating to beat the band. I got really bad hard shaking chills and got really weak. By the time I was supposed to get up, I could not get out of bed. The shaking chills continued for hours. THe nausea got worse and I vomited a couple times. I got diarrhea once. Barely was able to get to the bathroom I was so weak. Horrible all over body aches and could not lay still, really restless body. Aching muscles. Its horrible. I took my pain meds for my recent surgery. I took extra cortisol. It just went on and on. In the past I've had this last a couple days. Today, I took even more cortisol as the day went on, and finally by evening I was able to get out of bed and the vomiting had stopped. I had periods of heavy sweating, and periods of freezing. I don't know what my blood pressure and such were doing. It seems that when this happens I need to get a lot of extra cortisol into me to get out of it. So, I'm thinking it is a form of adrenal crisis.
From what I've read, you're not supposed to get into such a crisis unless there is some major stress to your body. A simple virus should not do it to that extent. I'm just a bit confused. Does anyone else have an issue like this? This is the 4th time it has happened to me. Sometimes I am so weak and sick I almost call and ambulance. One time it happened to me while I was at an appt with my ortho doc. I spiked a fever of 102, my BP dropped, my HR was high, and it was totally horrid. No one knew about my adrenal problem at that time so no one gave me any steroid. I think I was down for 3 days like that before I could get up that time. I fear one day this is gonna knock me really flat and I'll be in serious trouble.
Anyway, just looking for someone with similar experience to know I'm not crazy, dying, or something.
Joel
I seem to get into real trouble when I pick up some bug or stomach problem. It usually comes over me while I'm sleeping - I start to feel sick in some way - like last night I got heartburn really bad, started getting queasy. I got up and took some TUMS and tried to go back to sleep. It developed into a massive headache and nausea. Then I got cold which is really unusual as I am usually hot and sweating to beat the band. I got really bad hard shaking chills and got really weak. By the time I was supposed to get up, I could not get out of bed. The shaking chills continued for hours. THe nausea got worse and I vomited a couple times. I got diarrhea once. Barely was able to get to the bathroom I was so weak. Horrible all over body aches and could not lay still, really restless body. Aching muscles. Its horrible. I took my pain meds for my recent surgery. I took extra cortisol. It just went on and on. In the past I've had this last a couple days. Today, I took even more cortisol as the day went on, and finally by evening I was able to get out of bed and the vomiting had stopped. I had periods of heavy sweating, and periods of freezing. I don't know what my blood pressure and such were doing. It seems that when this happens I need to get a lot of extra cortisol into me to get out of it. So, I'm thinking it is a form of adrenal crisis.
From what I've read, you're not supposed to get into such a crisis unless there is some major stress to your body. A simple virus should not do it to that extent. I'm just a bit confused. Does anyone else have an issue like this? This is the 4th time it has happened to me. Sometimes I am so weak and sick I almost call and ambulance. One time it happened to me while I was at an appt with my ortho doc. I spiked a fever of 102, my BP dropped, my HR was high, and it was totally horrid. No one knew about my adrenal problem at that time so no one gave me any steroid. I think I was down for 3 days like that before I could get up that time. I fear one day this is gonna knock me really flat and I'll be in serious trouble.
Anyway, just looking for someone with similar experience to know I'm not crazy, dying, or something.
Joel
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Thanks for the reply. When you say you were so sick, can you describe how? Were you real weak and unable to get out of bed like I get? Nausea and vomiting? How did you feel? Did the doc think it was adrenal crisis? This concerns me because I am afraid of what happens if I get just a little bit sicker than I have been - than I literally won't be able to even get to the bathroom. My doctor gave me injectable steroid in case I can't keep down the pills - so I have that here at home should I need it. Yet, I still struggle with knowing when I need extra and how much extra I should take.
Why did you need to take the extra for 3 weeks? What was going on? What is your usual dose? Gah, this is so frustrating.
Joel
U have to be careful to monitor yur blood sugar when u increase yur steroids---do u know about this? DRUG STORE---DO NOT WAIT ---INCREASED STEROIDS CAN CAUSE DIABETES!!!!! Are u guys on the standard 5 and 2.5 doses---my mom is 80 and reduced to 2.5 recently bcuz she couldnt sleep--literally--can anyone help me---what is the oldest patient with Addison's out there? Pls reply
I don't know about 80 years old and Addison's. When was she diagnosed? 2.5 mg is a very very small dose of hydrocortisone. If it is causing her not to sleep she should avoid taking any steroid late in the day. Perhaps take her dose in the morning? And yes, steroids mess with your blood sugar. Cortisol is involved in so many body processes it isn't funny. Increasing the dose will mess with blood sugar, white count, and numerous other things. Can cause all sorts of side effects. Your grandmother should talk with her doctor more about her sleep issues, and her need for cortisol.
Vanyel, I have run across a website that has available, a comment/question & answer section, but I can't recall where I ran across it. I will try to poke around on the web to see if I can track it down. The people who set up the website are doctors, and it was really helpful for me in the very beginning, but then I just kept coming back to this website because the responses and helpful caring people get right back to you, and there's usually more than one person following a discussion, so it turns out that this website is truly the best one to keep in touch with because so many people are seeing MD's and already know about your symptoms, complaints, treatment, etc., and very often can give you a lead to pertinent information much quicker than the doctor's website. Usually, they are swamped and don't get an answer right away. BUT, I'll see if I can find it again and will post it here on this website. Good Luck you guys - We're all in this together, and it feels so great to have such caring support here. Thank you all so very much again! Just keep checking back, Vanyel. Somebody out there has to have had these same symptoms and will be able to help y'all.
Love, hugs, & appreciation,
:) meadowinthewoods
:) meadowinthewoods