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My medical mystery

I knew something wasn’t right when the headaches and excruciating pain started. I couldn’t get comfortable whether I was standing, sitting, or lying down. I’d had migraines in the past, but these headaches were different – it was like I was getting a full-body migraine every time my symptoms flared.

I saw five different providers from emergency rooms to primary care clinics. I was given over-the-counter pain relievers. I kept hearing, “Go home and if it doesn’t get better in a week, let us know.” It didn’t get better. It only got worse.

It had a name and treatments. That gave me hope.

Advocating for a change

At my first specialist appointment, my new rheumatologist wasn’t sure that what I was experiencing was polymyalgia rheumatica (PMR) because of my age. Most people with PMR don’t develop symptoms until age 60 or above. I was 51.

She may not have been sure, but I was, and I wasn’t going to have my symptoms glossed over – I wanted an explanation, a diagnosis. So my doctor prescribed a course of steroids to test the theory. Within two days, I felt like a whole new person.

Soon after, my rheumatologist was confident in her diagnosis of PMR. I was so relieved to finally have a name for what I was experiencing. “We can’t ‘fix’ it,” I thought, “But we can treat it, so let’s get on with the treating.” My rheumatologist prescribed a few different steroid medications, which worked for a while. Eventually, though, I relapsed.

After nine months of steroid treatment, I saw my rheumatologist again for a follow-up. I explained that I didn’t like the side effects of the medications and was concerned about long-term effects. I knew from years of caring for my mother and her health issues that we have to be our own advocates – I learned that we have to say things like, “This medication is making me not feel well,” and “Hey, this medication isn’t working. Let’s find one that’s going to do something.” So, by the third appointment, I was chatting with my doctor about different medication options that I’d researched, and by the end of the discussion, she was switching me from steroids to a biologic.

We have to learn that it’s okay to go slower.

Self-advocacy is self-care

Even once my pain was under control, it was like I went through stages of grief – I grieved the person I used to be, the life I used to have. When you’re handed a new normal, you have to accept that you can’t keep up the pace you did before.

At first, I was distraught and depressed. I could no longer work in my high-stress field. Projects at home that used to take a few hours began to take a few days. I had to start conserving my limited energy, which now means speaking up for myself when I’m too tired to socialize with family and friends.

Acceptance came with learning that it’s okay to not do as much, that I need to be patient with myself. Some days I need to just sit down and have a glass of water or a cup of tea, and some days I need a nap. It’s okay to take a breather – you don’t have to keep pushing through.

Keep advocating for yourself, because there is hope out there for living your life despite a PMR diagnosis. With better treatment I pushed for, I continue to have that hope.

Shelby Z Gonzalez

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PMR doesn’t have to be in charge of our lives.

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