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Addison's Disease Message Board


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Hi Heather,

You seem to be answering all of my questions...thank you!
It is disheartening to hear your energy will not return, but I had a feeling that might be the case. My endocrinologist thinks my addison's is autoimmune. He did an MRI of my stomach and my adrenals were very small. I have had a few problems with autoimmune diseases, guillain-barre syndrome as a teenager and hashimoto's hypothyroid in my thirties. And my family is riddled with autoimmune disease on my father's side of the family.

Now that I know what is wrong with me I can look back and see that I have been sick for years,...always finding it hard to keep up with my peers energy wise... but in 2002 I had three big strikes to my adrenals that I never seemed to recover from...my father was diagnosed with lung cancer, my husband was in a bad auto accident and then had a bout with a staph infection and I had a terrible bout with the flu in December 2002. After the flu I never regained my energy..what little I had. That's when the serious debilitating chronic fatigue, muscle aches, loss of appetite, hyperpigmentation set in...along with a growing list of symptoms as the months went by.

I first went to see a doctor in March. I left my then primary doctor with a prescription for a vitamin. Then I told my endocrinologist how I was feeling. He poo pooed me out of his office too...saying I might have fibromyalgia, but there was nothing endocrine going on. He is no longer my doctor. He then referred me to a rheumatologist. The rheumatologist was the best thing that ever happened to me. She took my symptoms seriously and instantly thought I had addisons disease.

At this point I looked the disease for the first time on the internet and could identify completely with the symptoms. It brought me such a sense of relief to finally put a name to my symptoms. I remember at that point having a revelation of my love of salt that appeared about three years prior to all of this and the near fainting spells. I had grown so used to both of these symptoms that I just accepted them as normal for me.

She tested me in May with an initial blood test. My adrenal numbers came back within a normal range then, so addison's was dropped. It was not until November when I was at the point of collapse and truly felt my body failing that I was tested again. I was referred back to my endocrinologist who did the cortosyn test and rushed the results because I looked like a walking skeleton by that point and my skin was an orange/brown.

Two days after being diagnosed I ended up in the emergency room in adrenal crisis with a blood pressure of 80/37 and dehydration. 16 bags of saline later and a four day hospital stay I was sent home. I was out of work for a month.

I am back to work now and really finding it hard working full time. I have enough energy to work, but when I get home I am pooped for the day and usually go right to bed. It is so frustrating not to have energy. My house is such a pit. I have always been a neat freak and it is so depressing to see my house so messy...but my choices are either feel good or have a perfectly clean house. I choose to feel as good as I can.

Now in reflection I can see I was always tired, even years ago, but I could just push on for some reason. Now I can't. When I run out of energy I have to take a nap. I feel like a little baby.

What do you do to increase your stamina and energy?

I guess what I am trying to say in a long winded way is I know my body has been through alot. I am so glad I found this board and can talk to other people with addison's disease. My endocrinologist said their group has only seen one other case in 20 years. It is nice to be able to chat with others who actually have the disease, not just hear what the textbooks tell you you are supposed to feel like.





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