I’m Still Dealing With the Aftermath of Cushing’s Disease

Kat Rees avatar

by Kat Rees |

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Most people I talk to who have Cushing’s disease describe their experience with it as the worst time of their life. But I actually had the most trouble with my physical and mental health after my struggle with Cushing’s disease.

I have seen many of my “Cushy” friends return to a normal, happy life, and while I am grateful I no longer have Cushing’s disease, I also have dealt with a lot of pain since then. I wrote about some of the struggles I had during Cushing’s disease, before treatment, in a previous column. This column will focus more on my hardships after recovery from treatment.

The amount of damage the hormone cortisol caused my body has left me with ongoing issues in my bones and joints. I am injured pretty easily, and it still takes a while to heal. I scar easily and have a lot of joint pain from activities that shouldn’t cause prolonged injury.

I always joke with friends that at 28, I have the body of an 80-year-old. I can bend over to pick something up and throw out my back for days. Or I might have a minor fall while roller-skating and still have pain while walking a month later.

While this isn’t fun, the worst thing I still deal with is anxiety. After having Cushing’s disease, my anxiety has spiked dramatically. Before being treated, I felt as if I were in a fog, and every day was a haze. While I struggled to get up in the morning and throughout the day, my feelings were somewhat neutral regarding anxiety. The fog seemed to numb it.

Kat during one of her recent hospitalizations due to anxiety attacks. (Courtesy of Kat Rees)

After having surgery to remove a tumor from my adrenal glands, everything in life seemed brighter and more vibrant, as if the fog had been lifted from everything I was feeling. Everything I felt was more intense — my happiness seemed happier, and my sadness seemed sadder.

My anxiety became a lot scarier. I started experiencing panic attacks at least three times a day, and they were by far the most frightening experiences of my life. My anxiety got so bad that I had trouble eating and lost a significant amount of weight.

I had to be hospitalized three times due to anxiety. I went to the emergency room 24 times by ambulance in three months because the panic attacks were so vivid I thought that I would die. The things cortisol can do to the mind are unbelievable. It nearly killed me.

After receiving a lot of therapy, my anxiety is much better. I still deal with it, but it’s not nearly as bad as it was. I can go a day or two without having major anxiety attacks, and I’m grateful I have more good days than bad ones now.

While I don’t regret having Cushing’s disease, I do wish I had been more prepared for what came after treatment, as perhaps I could have started working on my mental health before it took such a downturn. Nevertheless, I am still very grateful to be alive.

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Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Cushing’s.

Comments

Natalie Smith avatar

Natalie Smith

Thank you for telling your Cushing’s Disease story; it is so relatable. My Cushing’s journey began when I was 45 and was not diagnosed for 12 years later. It was then that I had an emergency surgery to remove a pituitary tumor that was probably about to cause a stroke. They removed most of the tumor but not all. I did not feel normal for the next 10 years with all the drugs and medicine I was.on. I developed severe osteoporosis which resulted in an extreme curvature of my spine, which will be a lifelong issue, but I am grateful that my final endocrinologist diagnosed me so that I had a name for it and created a path for recovery. Not knowing what is wrong with you and with so many bizarre symptoms was the worst. Thank you for sharing.

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Teresa Hanson avatar

Teresa Hanson

My daughter was 28 last year and is dealing so much like you have. She’s also dealing with brain cancer. You and all those who suffer are in our prayers..

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Kate Millo avatar

Kate Millo

I'm so pleased I found your '
Cushing's Disease' News!! Thank you! I had my 2 surgeries over 10 years ago but still suffer dreadfully from aftermath! Very low Cortisol wipes me out for days! Back pain, hair growth on face and depression!My mental state is fragile and can feel so alone!

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LUCAS MAGEE avatar

LUCAS MAGEE

I wonder if anyone has anyone advice to treat any stretch marks caused by Cushings Disease?

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Sylvia Moeller avatar

Sylvia Moeller

Hallo Kat. I am a GP from Germany.
Did your doctors not give you some emergency medication as a standby?
I always give my panic patients Lorazepam 1mg melting tablets, which calm them down within few minutes.
They usually don’t need them very often, as just the fact they have something to help them immediately, calms them down before the attack worsens.
You’re central nervous system is remodelling now after many years being a steroid junkie.
Things can only get better.

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Rebecca Heady avatar

Rebecca Heady

I am 61. I had gastric sleeve surgery in nov 2016 after being hospitalized in Jan 2016. Now I had a parathyroid tumor and partial thyroid removal in 1994. Not much more after that just slow weight gain. But by 2016 I was tired of being morbidly obese. I was so happy, I followed all the rules. Exercise, protein, meetings every month. My Dr and I were so proud! 100 lbs. lost in nine months. I noticed bruises on my arms people said I was just getting old, then very slowly 5 lbs here 5 lbs there weight gain started,why, still going to personal trainer why was this happening? My depression started getting worse started falling, fracturing small bones.I didn’t want people to see me I would cry about everything drove the wrong way to work i had worked there 12 years! Finally my endocrinologist did a petrosal sampling along with many saliva testing, and a lot of blood work, mri. So they did the surgery. Things did not go like I was told it would go my hormones didn’t bottom out like they said they would ,my feelings didn’t change I stayed on crutches or Cain for 9 month from my breaks, my memory loss is horrible there is lots more to this Thank You Rebecca Heady

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