All in the family

All in the Family? PMR

Last night my family threw a surprise 70th birthday party for my aunt Kathy, which was held in the community room of my aunt Ellen's condo building. The room was packed with people celebrating the happy event: kids squealing and chasing each other around the furniture, tables and counter tops overflowing with food, wine and beer and other tasty beverages filling up party goers' cups, the laughter and chatter of family and friends spending a bitterly cold Minnesota night together.

Amidst all of this, there was one person noticeably absent. The person who actually lived in the building where the celebration was taking place: Auntie Ellen. She was upstairs in her apartment, missing out on the party, because for nearly two weeks she's been suffering from severe, sudden, mysteriously debilitating pain throughout her entire body. But finally just a few days ago she received the tentative diagnosis of polymyalgia rheumatica (PMR) from her primary care provider.

What is polymyalgia rheumatica (PMR)?

According to information from the Mayo Clinic's website, polymyalgia rheumatica is is an inflammatory disorder that causes muscle pain and stiffness. The pain and stiffness often occur in the shoulders, neck, upper arms and hips. Symptoms usually begin quickly, within two weeks. And, most people who develop polymyalgia rheumatica are older than 65. It rarely affects people younger than 50. Auntie Ellen will be 72 next month, I believe.

Symptoms of polymyalgia rheumatica

The signs and symptoms of polymyalgia rheumatica usually occur on both sides of the body and may include:

  • Aches or pain in your shoulders (often the first symptom)
  • Aches or pain in your neck, upper arms, buttocks, hips or thighs
  • Stiffness in affected areas, particularly in the morning or after being inactive for a long time, such as a long car ride
  • Limited range of motion in affected areas
  • Pain or stiffness in wrists or knees (less common)

You may also have more general signs and symptoms, including:

  • Mild or low-grade fever
  • Fatigue
  • A general feeling of not being well (malaise)
  • Loss of appetite
  • Unintended weight loss
  • Depression

Similar to the description of PMR, my aunt has been suffering from several of these symptoms: shoulder and arm pain, leg pain, jaw pain, intense pain in her hands and feet. However, she's also had bouts of extreme swelling--especially in her feet, ankles, and hands. When my mother first told me about what was going on with my aunt (they're sisters), I immediately feared that she had RA. Strange, unexplainable swelling and intense pain in hands, feet, and other body parts for seemingly no reason? That sounded too familiar.

Checking up on my aunt

Towards the end of the birthday party last night, instead of heading back home I took the elevator up to my aunt's apartment to say "hi" and see how she was doing. I had heard that she was actually better for the first time in many days and had even stopped in at the party for a bit before I got there. I knocked on her door tentatively a few times, then she opened the door and warmly greeted and hugged me. We made our way to her cozy little "TV/recliner room" to catch up on life and more specifically, on all of the crazy things that have been happening with her health.

Her PMR journey

During our chat, which lasted something like two hours (I had only meant to stop in briefly and let her get to bed early!), she told me about how much horrible pain she's been in. Pain that kept her awake many nights and left her unable to walk or even get herself to the bathroom. Luckily her boyfriend has been with her nearly constantly, helping out any way he can.

Yesterday was the first day the dose of prednisone she's been taking finally seemed to significantly help and allow her to be almost normally mobile and functional. Although, she told me, that she's afraid to be up on her feet too much or to do anything too much in case physical activity makes her inflammation and pain flare up again. This happened once before when she thought she was okay and she went into the office to work for a few hours, but then awful, searing pain started to shoot through her arm and hands and she realized that she was not, in fact, okay.

A strange coincidence in her getting this autoimmune, inflammatory disease is that her boss, a middle-aged man in his late 50s or early 60s, I think, was diagnosed with PMR about a year ago. While we talked about the weird similarities of this, she wondered aloud if the cause could be something environmental. I had never heard of the disease myself, and now I've only begun to do some quick, hasty Internet-searching for information about it. So far from the limited information I've read, like RA, there is no known cause for this disease, and environmental as well as genetic factors could very well play significant roles.

Right now, the good news about her situation is that the prednisone seems to finally be working and most of her pain is totally gone. She also was able to make an appointment with my rheumatologist at the University of Minnesota, who is an excellent doctor. Her boss, who also has PMR, will be switching rheumatologists soon to see my doctor as well, per the recommendation of a family member or close friend oncologist specialist who knows of him. It's also good news, I think, that my aunt's tests for RA and lupus came back negative. While I don't know that much about PMR yet, I hope it will be easier to treat than either of those diseases.

My aunt now knows what it's like

Sitting next to my aunt in her little apartment last night, someone I grew up being very close to, I felt anxious and sad hearing about the excruciating pain she's been suffering from, as well as the mental and emotional stresses and fears of having to deal with a health issue that is not easy to understand, control, or treat.

"I feel so bad for what you've had to deal with all of these years having RA," she said. "I can't imagine living with the type of pain I've had for the last 10 days for years, like you have. I understand so much better now how it's been for you."

Hearing her say that made me feel good, sort of, in a bittersweet way. Despite how close I am with certain family members, other than my grandma who had severe, disfiguring RA until she died in 2003, they have never been able to understand what it's like living with serious, debilitating, life-altering chronic pain.

No matter what I've told them, how I've tried to explain it, or the amount of tears that have run down my face, they just can't understand unless they experience it themselves. And now, Auntie Ellen knows what it's like. And I feel sad and terrible about that because I do understand what it's like to have your life cruelly interrupted by pain. I don't want anybody that I love to go through that. Ever.

It makes me wonder, is this ruthless autoimmune sickness gene on both sides of my family now? Will I pass it on to my future children (if I hopefully can have any)? Will more of my family members become stricken by these types of diseases in the future? These are frightening, worrying thoughts. And there are so many questions and just not enough answers yet, which drives me crazy. But I know for right now, the best thing to do is to support my aunt with her new, scary diagnosis and to continue taking care of my own health as best as I can.

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