These are the symptoms of Cushing’s disease that I missed
I thought I was going crazy, until I learned about Cushing’s disease
When I first started to experience Cushing’s disease, I had no idea what was happening to my body. Doctors blamed my symptoms on depression, anxiety, polycystic ovary syndrome, eating issues, and more. I thought I was going crazy, until I finally learned about Cushing’s disease.
After that, it felt like something had finally clicked in my head. Finally, a word existed to describe what I’d been experiencing.
Still, I wasn’t aware of the many issues that Cushing’s disease had been causing until it was too late. Had I known more about Cushing’s disease symptoms, I might have caught on sooner, or at least been able to advocate for myself with a bit more gumption.
At first glance
When you Google Cushing’s disease, a few well-known symptoms pop up. The most common is the buffalo hump, a fatty deposit that appears between the shoulder blades. This was my first symptom, but because it was on my back, it took me over a year to notice it. Only in hindsight and looking back at pictures did I realize just how long I’d had it.
Another common sign of Cushing’s disease is weight gain. I gained 70 pounds with my first tumor, and 50 pounds with my second. Both times, the weight gain was very rapid, happening in less than three months, and most of the weight sat in my center.
The big change that occurred was the markings on my skin. I had thousands of striae, or deep, thick, purple stretch marks, all over my body. They spread over my stomach, breasts, thighs, and arms. I also had thinning skin, which meant I cut and bruised easily.
I was black and blue and purple all over. On top of that, my wounds healed slowly, so I was covered in marks and scars. To this day, even on medication, it takes months longer than it normally would for any cuts or burns to heal. (Don’t even get me started on my piercings. I love them, but oh my God, do they kill me.)
With a second look
I faced many issues I didn’t even realize were related to Cushing’s disease until after my diagnosis. My period stopped entirely, and I kept telling myself it was simply because of stress, lack of sleep, or weight gain. Of course, eventually, I realized that my period had disappeared because of my high cortisol levels.
I also had major pain in my arms and legs, as well as extreme weakness. I would wake up screaming, and the only thing that helped was sinking myself into a hot bath and staying there for hours and hours.
At the time, I blamed it on heavy workouts, and even — in hindsight, this seems so silly — on growing pains. (Which makes no sense! I was 22.) It is so easy to talk yourself out of symptoms, especially when doctors are telling you nothing is wrong. It turns out that my muscles were atrophying, and my bones were hollowing out.
I talked myself out of other symptoms, too. Acne was due to my skin-care routine not being advanced enough. Hair loss? That’s normal, I have curly hair! Insomnia? Well, I have been stressed lately.
Today, I know what to look for. That’s one of the reasons I was diagnosed with a recurrence of Cushing’s in just a few months, while the first diagnosis took two years.
I created and participated in multiple chats with other Cushing’s disease survivors, which helped me realize I had been ignoring several symptoms. The first was a change in how I smelled: A change in hormone levels gave off an odor. The second was a problem with vision. I thought these were exclusively due to the tumor, but in reality, hormones were affecting my vision as well. I have blurry vision, static vision, floaters, and halos to this day, even while being treated.
Lastly is the emotional aspect of Cushing’s disease: the anger, depression, emotional outbursts, and extreme sadness. I did everything to fix this, including therapy, meditation, isolation, cognitive behavior research, etc. The only thing that made me feel better was treatment.
Cushing’s disease was a lonely process for me, and I’ve dedicated a lot of my life to making sure that it is less lonely for others who are suffering from the disease. There are so many little and avoidable symptoms, but they can all add up to a gnarly disease.
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