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Addison's Disease Message Board


Addison's Disease Board Index


Wow, you could be describing my life. I have also been battling severe muscle pain, extreme fatigue, shakiness, low BP, chills and other symptoms that seemed to partially revolve around my food intake. I also have a brown pigmentation around my lips and other spots. This started 4 years ago and since then I have had a battery of tests, most of which were normal until recently. The tests that weren't normal were my cortisol and blood sugar levels. The doctors did an ACTH stimulation test in 2008 but did the test wrong so the results were useless. They also said I had pre-diabetes and to watch my sugar intake. Hard to do when you crave sugar and salt! (I am thin/average, organic vegetarian so the diabetes didn't make sense)
At this point I couldn't work, I felt like I was dying and relied heavily on pain meds (which I am still taking). Due to insurance issues, depression and the debilitating nature of this thing I gave up and accepted my initial diagnosis of fibromyalgia.
Recently I visited an endo who ran more tests and again the issue of low cortisol came up. She did another ACTH stim test but I think they did this one wrong as well. (I asked a question about it on here but no one answered yet)
I'm seeing her tomorrow to ask about the ACTH test problems.
What we did find though is that my Vitamin D is low. A few months ago she gave me a 50,000IU script but it is still low so I am going to discuss that as well. From what I've read, low vit D alone can cause the problems we are experiencing.
The biggest revelation however came quite by accident. I had been experiencing what I learned is called sleep paralysis. My husband looked up my strange symptoms online and saw that it was a symptom of narcolepsy and said "Hey, that sounds like you!"
So I went to my primary doctor and told him pretty much the EXACT same thing I'd been telling him for years only this time I added the sleep paralysis and my husbands discovery. He said "It sounds like you may have Narcolepsy". :confused:
I saw a neurologist, described my symptoms and he said it sounded like a textbook case. He even said the flu like muscle pain may be caused by it. I am going for a sleep study in 2 weeks to verify.
Researching it I see that many people that have it also have other autoimmune disorders such as lupus. There is also a connection between sleep disorders and cortisol. The cortisol affects blood sugar so it may explain the cravings and levels.
Right now I'm so tired all the time I can barely function. There are days when I sleep 14 hours. I know that once I start taking the Nuvigil my dr gave me I will have part of my life back and I should have the energy to fight for a proper Addison's diagnosis. I want to know the doctors did the test properly so if it is Addison's I can deal with it and if it isn't we can find another reason for the low cortisol.
It has been 4 years but I finally feel like it's near a resolution. I know I won't be like I used to be but I will get some quality of life back once I get the vit D and sleepiness under control.

btw. I also explored the celiac thing but after 6 months being strictly gluten free I wasn't any better.

Good luck! I know there aren't many answers here but I hope some of it helped!


QUOTE=Vuitton70;4710345]I have been battling auto-immune issues for quite some time, currently having PA and still being tested for Lupus.

All along I have had episodes of severe fatigue (which can parallel in Lupus), super low blood pressure (my Pain Mgt nurse asked me if I was alive one visit), I cannot seem to process carbohydrates properly, I get SUPER shaky and hot after eating them, I inhale salty foods, I have massive night sweats, I have weird pigmentation areas on my face and outlining my lips and I have consistent spells of fainting - just last week, also I get super lightheaded when I go from kneeling/sitting to standing.

Whew, that is a lot, and sorry for going on but I do not know what is going on. My Rheumy is VERY lab based - which is why I am still in limbo w/ the Lupus symptoms and she has not even brought up adrenal issues.

Which is why I am here, I was on another parenting board and one of the mom's had Addison's in her siggie...I read the information and saw myself! This has been going on for years & as of late worsening, I am getting scared as I had to pull over while driving w/ my 3 yo last week and had the fainting spell at her dance class.

Any help you can offer would be appreciated!!

Thanks :)

ETA that I have horrid bouts w/ IBS and went into my GP for Celiac's testing, etc. so this issue has been going on too long![/QUOTE]
[QUOTE=ozzieandhariett;4715053]Hi Michelle,
Have you lost weight? I had symptoms late summer, fall and winter. My Gi doc did a cortisol that was low and sent me to an endo for a stim test. She blew it off because if was done mid day and refused to do the stim test. She remembered that I was having surgery on my neck in Feb and called a week before asking me why I haven't gotten an AM cortisol. I said she never sent me a prescription for one, so she faxed it to the lab. She called the next day saying she was "shocked". I should be in hospital. I found out later from my family doctor it was zero. Good thing she wanted to cover her butt, because I just thought it was depression. I would have died during surgery. I would keep pestering the docs to monitor your AM cortisol and do a stim test. Good luck. Mary Anne[/QUOTE]

Oh my! I am certainly glad she decided to cover her butt... my weight fluctuates a lot, most ppl have hypoglycemia with addisons I have diabetes so it's a little different for me. I went to the ER last week feeling very dizzy and weak and was given an IV of steroids for addisons and I have been feeling much better, I need to find a new endo asap the one I am seeing is not a good fit for me. I think my meds need to be changed. Good luck with this and best wishes~

My endo never gives me test results, never tells me what test he is doing I feel like I am just lost with this disease and I do not like it! I was diagnosed during an extensive hospital stay they ran a lot of different test on me there and now they take my blood with each visit but never tell me what is going on! I am looking for another endo because I see everyone knows what their levels are and know what their blood work says and I am in the dark! I have to wear an ID bracelet at all times I went to the doctor without it on one time and he went thru the roof yelling that I had to wear the medical ID bracelet but he has not really told me how serious this disease is! I have learned more on my own!!!!





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