Managing osteoporosis pain as someone with Cushing’s disease

Cushing’s disease is known to cause osteoporosis, a condition that weakens the bones. For me, adjusting to this issue was devastating. It has defeated me over and over, forced me to take time off work, and required the most support of any of my conditions. I’ve currently stopped taking all of my medications for Cushing’s disease to prepare for in vitro fertilization, and it’s been a terrible reminder of just how bad the pain can be.

My osteoporosis is worst in my wrists and ankles. I’ve awoken on several occasions screaming and sobbing because the pain was so severe. In fact, as I’m writing this, half of my right hand is elevated and wrapped in ice. Many of my other symptoms are manageable, but osteoporosis is incredibly hard to deal with.

Prevention

I try to prevent severe pain as much as I can. During flare-ups, I sleep with my legs elevated on pillows and my wrists wrapped. Though I still wake up hurting sometimes, the pain is less intense when I keep my wrists straight.

I try to take it easy when my osteoporosis is flaring. I’m an ambulatory wheelchair user, which means I’m able to walk but still rely on mobility aids. I sometimes push myself to build up strength, but during a flare-up, I give my body the rest it needs. I use my aids every day, and the only workout I do is simple stretching.

Lastly, I take vitamins to support bone health, specifically calcium and vitamin D.

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Pain management

Despite my preventive efforts, I still experience pain. When I’m hurting, I take turns applying ice and heat to the sore area. I keep wrist wraps in the freezer and have a heat wrap I can microwave.

Massage therapy can be helpful, but at times it’s too painful. If I can manage it, I use a massage gun and compression boots to help keep my blood flowing. If needed, I may also take pain medication.

If my pain is severe enough that I’m crying or waking up because of it, I call it crisis pain. This level of severity is harder to deal with, but heat usually works best. I’ll start by wrapping myself in a heated blanket and putting on a show to distract me. If that doesn’t work, I’ll get into my bathtub and put my limbs under the hot water. On my worst days, this is the only thing that helps.

Sometimes I’ll submerge my wrists in a large bowl of ice, which helps numb the pain. I don’t leave them in for too long, and then I’ll dry them carefully and wrap them with my heated blanket.

Pain like this can be overwhelming, knocking me off my feet. When it’s this bad, I spend too much time sleeping, hoping the aches will disappear. I also meet with my therapist more often because the pain takes an immense mental toll.

If you’re dealing with osteoporosis or another type of chronic pain, please take it easy and consult a doctor about ways you might prevent or manage your symptoms.

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.