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With so many anecdotal accounts of this just on this forum, it's incredible that nobody has any insight into what it is.
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Happened twice this past week, but very mild, and I think it's because I know what to do now. As someone said, if you use the adrenaline things are pretty O.K. If you don't, meaning if you just remain seated and let it accumulate, that's when the pain and the throbbing happens. In the two cases this past week, I felt it coming on (once was after singing in public and the other was after speaking in public) and I IMMEDIATELY stood up and just started pacing for a minute or two and it subsided a lot faster than usual and was a lot less painful than usual.
My challenge now is that I'm on jury duty for the next four weeks, and every time they swear the jurors in I have to stand up and say "I do not so swear since I do not believe there is a god." I feel perfectly fine when I say it, but almost always, within a minute of the episode, I start feeling the problem, and the thing is by that time the order has come down to "please be seated!" I really don't know what I'm going to do. I may have to tell them the truth, that I have a medical adrenaline condition, and I have to remain standing for a minute or two after speaking in public.
I really can't believe that this thread has now been going on for YEARS and not a single doctor has dropped by to say "Oh, yes, that's X and Y, and it's usually fatal, which is why you don't hear about it" or "Oh, yes, that's A and B, it's nothing, not life-threatening, just keep moving and it will go away in a few seconds. And here's the treatment for it."
We know exactly what the symptoms are, we're almost all having exactly and precisely the same thing, and yet there it is, this abiding decades-long mystery. Really, really odd.
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It first started in 2003, after weeks of intense stress.
It had been gone for a few years, but now is back. It's mentally and physically crippling! I'm also on steroids for RA, and other medications. I'm pretty sure it's adrenal insufficiency, but you may want to be tested for a pheochromomocytoma. The steroids have shut down my adrenal system, so the body cannot fight off any forms of stress.
I'm praying this will end!
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OH MY GOSH!! I am not alone. This began about 2 years or so ago, I am now 54. When my adrenalin kicks in, if I'm suddenly frightened or get upset, or if I try any strenuous activity, this monster wakes up within me. I begin sweating, the pain around my ribs, my back then moves its way down my intestinal tract where I feel for a moment I will throw up or pass gas, it is excrutiating!! I cannot cry, I scream. I MUST have cold air blowing in my face, I have to tear off my clothes. The severity depends of what I was doing or how hard my adrenalin shoots in . I need answers! No one can give them to me. I had a scan done, it showed nothing but 2 or 3 cysts on my kidney which the doctor insists they do not affect anything. If apparently I am not alone, someone must have answers and I am desperate. WHAT IS IT?
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I would have never imagined how bad it can be.
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Wow I have the same thing and had it several times after being in a stressed physical situation such as a fight or sports etc... the same exact symptoms as everyone has mentioned. and very intense to the point of being debilitated for a few minutes until the adrenaline rush is complete. I read that this will happen in situations of fight or flight and that the lower back is connected in someway with the adrenal gland function in extreme adrenal gland rush situations. I’m 58 I’ve had this for the last 10 years or so.
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Mild disease or non-classic is defined as 20% production or more. General descriptions of the disease generally focus on physical features rather than symptoms, which does a great dis-service to people who have the disease as it types them by physical appearance rather than by symptoms. It's the symptoms that are most important except in the case of virulization - which is less than 50% of baby girls with the classic form. The other 50% with the classic form could have just as severe of disease without the physical manifestations. People with untreated classic CAH in adult their bodies will make up for the lost hormones - generally by developing tumors. No one knows why. Also, people with non-classic CAH sometimes may need treatment. The treatment has a lot of side-effects and can be dangerous, so doctors generally do not do it unless it's needed. In the case of infertility, in women it's often treated with clomid and low dose steroids not taken daily, and for men it involves the evaluation and testing of testicular adrenal rest tissues (TART's).
In these high intensity situations your adrenals might get super stressed. It's nothing to worry about unless you also have other symptoms. Both Addison's disease and NC-CAH can have similar symptoms. The symptoms for Addison's disease are progressive over time, whereas the symptoms for NC-CAH are consistent over time and may just feel normal. If you're concerned about the pain, you should cross reference this list and pay attention to how you feel. In the case that something like this is going on - you would need to see an endocrinologist who understands these diseases (the majority do not). More than likely this is nothing to worry about, but if you are worried you should get it checked it out. Of course, there are many other things that are far more rare that could be happening. But for those of you who are incapacitated by pain, that warrants a discussion with a trusted doctor or medical professional.
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