Cushing's Info

Quoting Cari:

My mom was diagnosed with Cushings in Nov. 2012 and had her pituitary tumor removed in Jan 2013. She is now on a cortisol replacement steroid. She is having severe bone, muscle, and joint pain. Does anyone know how long these symptoms will last and if there is any medication that she can take to help the pain.

Cari, you also got these answers:

From the message boards at cushings.invisionzone.com/index.php?showtopic=52605:

Hi Cari, what is the dose of the replacement hydrocortisone that she is taking? It may be that her body is going through withdrawl ( similar to what a heroin addict might feel ) from the excess cortisol.
This would be a normal reaction to less of the "drug" than what her body is accustomed to.

And, from the facebook group at https://www.facebook.com/groups/41301773552/:

Michelle said "I take mobic and its a lifesaver"

Carolyn said "It will take a good 6 months, what she is experiencing is cortisol withdrawals. She won't fully feel herself until 18 months post op. ((hugs)) DO NOT take codeine or any other narcotic type painkiller, although they work the best for the pain, they will stop her body from producing her own ACTH."

Quoting Jutta:

I am a resident of Ontario Canada and have reason to belive I have cyclic Cushings with the last rapid weight gain and high cortisol about 6 years ago Serum cortisol was about 750 each time with high pm saliva cortisol identified last year. My gyneacologist discovered it 6 years ago and want a test done not covered by OHIP with a hopeful contact with a Boston specialist that he knows. I am scared I cannot afford the costs of diagnosos and treatment. Any suggestions?

Your first response is on http://cushings.invisionzone.com/index.php?showtopic=50019&pid=449147&st=0&#entry449147 It reads:

I have cyclical cushings. I have a rare form. When my cort is high I feel good & when low, I feel sick, so your symptoms will be opposite of mine.

I just started a new cycle, so this is perfect timing. I started by feeling a little flu-like. Aches, nauseous, night sweats. By about 1 1/2 days into it, I couldn't stay awake. In 3 days I was awake for about 7 hrs. When I am awake I have terrible hot flashes, depression & vomiting.

My first sign that im coming out of it is that im not as tired. All the other symptoms start to ease after that.
When I'm cycling the other way, I start with an abundance of energy, which is odd for me. It almost feels like I'm a normal person again. I hang out with friends, clean the house, pay bills.

I don't know if this helps, but if not let me know & maybe we can talk through it.

Take care, have a wonderful day & feel better!