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Living With Polymyalgia Rheumatica (PMR): Patient Insights for the Newly Diagnosed

If you’ve recently been experiencing symptoms or have been diagnosed with polymyalgia rheumatica (PMR), you’re not alone. PMR is an inflammatory disorder characterized by muscle pain and stiffness, particularly in the shoulders and hips. It affects around 1 in 2,000 people aged 50 and above, with women more likely to be affected. The risk of developing PMR increases with age, highlighting a shared vulnerability among those approaching their golden years. 

As you navigate this new reality, connecting with other patients living with PMR can offer practical advice and tips from firsthand experiences of living with this disease. 

We reached out to The Mighty’s PMR community, inviting them to share their journeys. We hope their shared experiences will offer you support and a sense of community as you forge your own path with PMR.

What Is PMR?

PMR is an inflammatory disorder predominantly affecting older adults, typically those over the age of 50

Symptoms start as pain and stiffness in the muscles around the neck, shoulders, and hips. These symptoms are often worse in the morning or after periods of inactivity. Other symptoms may include fatigue, general malaise, mild fever, and, in some cases, weight loss.

The onset of PMR can be sudden. Many patients report waking up one day with significant pain and stiffness that was not present before. This sudden onset is one of the hallmarks of the condition.

Challenges in PMR Diagnosis

Getting a PMR diagnosis can often be a challenging and prolonged process. The nonspecific nature of the symptoms and the fact that they mimic other types of inflammatory arthritis make it difficult for health care providers to immediately consider PMR as the cause. 

In a Mighty survey of 100 patients, nearly 40% of respondents with PMR said getting a diagnosis was a significant hurdle, and 53% reported that it took over a year from first discussing symptoms with a health care provider to receiving their diagnosis. 

There is no single test to definitively diagnose PMR. Diagnosis is typically made based on clinical evaluation, patient history, and the exclusion of other conditions. Blood tests can indicate inflammation but are not specific to PMR.

Challenges in Managing PMR

Once diagnosed, there are several challenges that patients may face while living with PMR. 

Half of the surveyed PMR patients highlighted the difficulty in managing symptoms effectively, and a substantial 83% feel the impact on their daily lives, indicating how deeply PMR can disrupt routine activities.

Interestingly, patients revealed difficulty accessing information about PMR, and while 72% of patients rely on their medical team for information about PMR, 22% turn to other patients for insights. 

Shared Experiences and Insights 

We also asked PMR survey respondents some common questions patients often have. Here’s what they said:

What was your diagnosis experience like? What were the challenges associated with getting it?

1. “[It] took 10 years. Living nightmare.”

2. “Symptoms over seven years and being stigmatized by medical staff as a ‘drug seeker.’”

3. “My main symptoms were increased fatigue and a feeling as if my scalp was bruised. When the bruised feeling got worse instead of better over a couple weeks, I went to the emergency department where I was diagnosed with one of the few autoimmune conditions that I had never heard of!

4. “[It took a] process of elimination and much testing to find out what was wrong with me. That took around a year.”

What empowered you to learn more about PMR? How do you advocate for your care?

1. “I research everything I have to better educate myself when I speak to doctors.” 

2. “I keep repeating myself to doctors [until] someone listens.”

3. “I read a lot, but to be honest, there’s not a whole lot out there, mostly repeats of the same information. When I see the doctor, I ask about what options are available for continuing treatment.”

4. “In searching for solutions, it’s important to know how the disease works. I’ve switched rheumatologists three times in search of someone to find a diagnosis.” 

What is the one thing you or your loved one would tell someone who is newly diagnosed with PMR? 

1. “Be persistent. If your doctor isn’t trying to give you an explanation, find a new one.” 

2. “Hang in there and keep your body moving.”

3. “The fatigue is real. Pace yourself and plan ahead to give space for rest.”  

4. “It’s not a constant ongoing condition.”

5. “You are not crazy. The symptoms are real. Fight for diagnosis and treatment.”

6. “It will get better.”

Resources and Support 

It can be daunting to know where to get started once you receive your diagnosis. You can get specialized care from medical professionals like rheumatologists, educational materials from trusted sources, advocacy support from organizations like the Arthritis Foundation, Autoimmune Association, Vasculitis Foundation, and support from patient groups and online communities. Connecting with other patients and learning from their experiences may make your journey with the condition feel more manageable and less isolating. 

Additionally, counseling services can assist with the emotional challenges of PMR, while tailored exercise programs and nutritional advice can help maintain physical health. Financial assistance for medication, wellness apps for symptom tracking, and resources for family and caregivers further support the comprehensive management of PMR.

Access comprehensive information about PMR by exploring the resources at PMR and You

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