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
Hi, I can't sleep, it's 3:00 a.m., and I'm so scared of hot weather that we'll be having in CT, in two days.
I've written about this before, and I won't go into the whole thing, but basically, when temps. go up into the mid to high 70's F., and beyond, it becomes a torture to me. I am caring for my dad, and must drive him here and there, and get his meals, and when it gets hot, all I can do is moan with each breath, cry, swear at a god I don't even believe in, and writhe around! In short, it is unbearable!
My body overheats at the drop of a hat...I can develop a fever in seconds! But why the agony, I need to know what's happening inside me, and the doctors simply dismiss it, because they don't GET how much it makes me suffer.
I'm not a depressive person, but it gets so bad that I want to die. There have been days where I kept jumping into a tepid shower...and was so hot that the luke warm water felt like ice! I try extra cortisone and florinef...sodium....water....nothing helps! We have an AC, but it can't cool the whole house.
Anyway, my endo. doesn't think this is related to Addison's....but he had no ideas to offer me. I'm sorry to ramble, but I don't mind saying that I'm scared....I can't imagine living through yet another summer! I don't expect any solutions, just had to share with someone. Thanks for listening.
I've written about this before, and I won't go into the whole thing, but basically, when temps. go up into the mid to high 70's F., and beyond, it becomes a torture to me. I am caring for my dad, and must drive him here and there, and get his meals, and when it gets hot, all I can do is moan with each breath, cry, swear at a god I don't even believe in, and writhe around! In short, it is unbearable!
My body overheats at the drop of a hat...I can develop a fever in seconds! But why the agony, I need to know what's happening inside me, and the doctors simply dismiss it, because they don't GET how much it makes me suffer.
I'm not a depressive person, but it gets so bad that I want to die. There have been days where I kept jumping into a tepid shower...and was so hot that the luke warm water felt like ice! I try extra cortisone and florinef...sodium....water....nothing helps! We have an AC, but it can't cool the whole house.
Anyway, my endo. doesn't think this is related to Addison's....but he had no ideas to offer me. I'm sorry to ramble, but I don't mind saying that I'm scared....I can't imagine living through yet another summer! I don't expect any solutions, just had to share with someone. Thanks for listening.
cold wet paper towels on my face, arms, neck, etc. I never plan or accept invitations that require being outside in the heat. It sucks the breath out of me. Even going from air-conditioned car to an air-conditioned bldg. a few yards away is tortuous in the Alabama summers. I carry alcohol wipes at all times, as well as something to fan with. I stay inside during hot weather and keep the a/c very low and usually have the ceiling fan going as well. I have a wonderful remote control fan that I keep by the bed. It feels almost like an a/c. I'm also looking into getting a portable a/c for my bathroom. There are two a/c vents in there, a ceiling fan, and a floor fan, but it's not enough. Good luck to you. If you find any answers, please post them. Some Addisonians have as much trouble with cold weather extremes. It doesn't get too cold for me in the deep south.
It's amazing how much it can help...wouldn't think of going anywhere like DisneyWorld, New Orleans, Savannah, etc., without it.
http://chillowpillow.net/
I went online and tried to find the "frogskin" cloth. Because I can't remember it's official name, or maybe it has been discontinued, I couldn't find it. I bought mine at our locally owned sporting goods store similar to Bass Pro Shop or Academy Sports. Here's a link for something that sounds similar:
http://www.warmers.com/ItemDetails.aspx?itemid=COOLCKH&pkey=Cooling+Products%7CMagic+Cool+Cloth+(Khaki)&pval=35%7CCOOLCKH&pIds=CategoryID%7Citemid
http://chillowpillow.net/
It amazes and scares me, just how hot my body gets! I'm surprised I've never had a crisis from it, though I've been close. Used to LOVE summer, I'm a flower gardener, and that has been greatly curtailed now, as are summer activities, like you.
But all that aside, I would just like to get through a summer, without suffering. I wish I knew what was happening to my body, when the awful weakness comes. I have a high threshold for pain, but this, whatever it is, is too much for me....and very hard on my heart!
I sure will post something, if I find any more answers on this! Thanks again, and I wish you a cool, or at least cool-ISH summer!!
Judith
You sound like me, I leave my bedroom window partly open in the winter. The poor people who live with us, my dad is elderly, and always cold...so we come home late afternoon, I turn the AC on, and he, the heater!
I have an added problem, where I rarely sweat. So my skin gets very smooth and dry! The days when I seem to be able to stand the heat, are the days my perspiration has kicked in. I'm trying to find out what jump-starts sweating, because then I would know what part is faulty! Maybe....
I was wondering whether aspirin might help...maybe I'll try some, next time. Connecticut is much hotter, these days, than it used to be!
Polo Ponies, sounds like a great job! I was a 'horse woman', in the past.
Well, the heat is here...had a bad attack today, whilst food shopping. I have looked into some of those cooling ideas, and also see that they have cooling vests. People with MS use them.
Thank you all, for your support...it means a lot...especially when my dad keeps telling me that it's not so hot! Oy!
Wow, your post could have been written by me! It's a miserable health problem to have, isn't it? And the doctors seem to be at a loss as to what's going on.
You don't have to have Addison's to have heat intolerance, in fact, not all that many have it..some have cold intolerance. I have also seen people with MS, who have it. Look into Arctic Heat, a company who sells cooling vests, neck wraps, etc. I am going to try that.
I assume you've had your thyroid tested? That can be another cause, yet mine is always good. I do think that our problem of not sweating, must make it lots worse.
I wish I could help more, but know that you're not the onkly one, and as you're already doing, keep in the air, as much as possible.
We'll have to do a little Autumn dance, as well...hope that it will be an early one!
Judith
Thankyou so much for your response. I have thought my heat intolerence is do to some disease, but all test including thyroid came back fine and for a long time thought it was menapause,I had a total hysterectomy in 1994 at 47. Like you I can tolerate pain and there always is something you can take, I wish there was a magic pill for this. I am scared if we have a storm and the electric goes out and no a/c, I will have to sit in the tub with the cold water running on me with all my battery fans going around me. Some people joke about it and my grandchilren ask me, why you don't like the the summer grandma. I have stuck my head in the freezer amny times.Like you I was a caretaker of my mom, who has passed away, but she was always cold and taking her back and forth to Drs., in the summer was a killer for me. I am so glad I found this web site, thankyou again for your help and thanks for listening.
Oh boy, I hadn't even thought about a power outage! That wouldn't be good, for sure! Of course, there are always book stores...I have sat in a Barnes & Noble, reading, just to keep cool...although you can't stay there forever!
It IS hard for family to understand...I used to LOVE summer!! I hear you, driving your mother in the car...we have a small Focus, and it's hard to have two heat settings in that tiny cab! If I find out any more from my new dr., I will post it...but I'm dubious!