What a Cushing’s disease flare-up looks like for me

The term “flare-up” is used to describe the sudden onset of aggravated symptoms. Although I’m medicated for Cushing’s disease, I still have significant flare-ups. Often, they’ll happen when I overexert myself, fail to rely on my mobility aids, or overestimate how good I feel.

I also have flare-ups during medication changes, when I’m dehydrated, and, sadly, sometimes just because. I wish there was a map so I could avoid them, but the truth is they are simply part of being chronically ill.

I’ve had Cushing’s disease since 2018 and was diagnosed two years later. Flare-ups have been a part of that journey the entire time. They look different with untreated Cushing’s disease, so my focus in this column will be how flare-ups might appear when the disease is treated.

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Catching a flare

Although Cushing’s flare-ups start for different reasons, they tend to look the same for me, so I can see them coming. The first sign for me is muscle pain, primarily in my legs, shoulders, and arms.

A good sign that a flare-up is coming is if putting my hair in a tie is painful. That’s a fairly low-effort activity, so when it hurts, I know something is wrong. Sometimes, if I think I might be flaring, I’ll hold my arms up for 10 seconds. If it’s easy, then it’s just normal muscle pain. If it aches or burns, it’s the start of a flare.

Sometimes, I can treat a flare early by taking pain meds, taking it easy, and doing some heat therapy. However, if I don’t, I’ll move on to the next symptom: bone pain.

I have osteoporosis from Cushing’s, and the bone pain is out-of-this-world horrible. I’ve awakened on many occasions screaming in pain from this. It’s a deep ache that feels like someone is crushing my bones to dust. If I reach this stage, I have to start treating myself.

Heat therapy sometimes helps, but more often I rely on ice. I ice the worst parts or even take an ice bath if it’s incredibly bad. I sleep with ice packs tied around my legs and arms and take a higher dosage of pain medication.

Long-term flares

Some flares are short and last a day or two. Others last several days or even weeks. When that happens, I find myself with high levels of inflammation and bloating. I get a severe moon face, which is a rounded face caused by high cortisol. My clothes don’t fit, my stomach hurts, and I feel and look like a puff pastry.

Longer bouts of a flare-up also often lead to severe headaches and migraines. Mine are so bad that I usually have to lock myself in a dark room with no lights or sound. These will come and go for as long as the flare exists.

Lastly, no matter how long or short my flare is, I’m always tired afterward. My body is fighting against my illness, and it’s tiring. I need more sleep for a few days, and if I try to go back to my normal activities too quickly, I’ll flare even worse and end up out of commission for even longer.

You can also follow my journey on TikTok and YouTube.

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.