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Physical Therapy Needs to Be More Inclusive of People With Fibromyalgia

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Last year, I did a few months of physical therapy sessions for fibromyalgia pain. It helped significantly, but I only got from once a week to twice a week before my script for it ran out. My therapist and I figured a call to the doctor would get it renewed. After all, I was finally making progress. No. It took five months, and I had to be seen by the doctor, except he was too busy. I had to see the nurse practitioner. OK. I had seen her before during those five months because I had numerous colds and the flu. Still, I didn’t understand why I needed to be seen for this.

A nurse came in first to update my record. We discussed my fibromyalgia. He said, “My mother has it too. And a lot of these doctors still think it’s all in your head.” Well, that’s (not) comforting.

The nurse practitioner finally came in. All she wanted to talk about were my blood disorders that were pretty quiet at the time. I was there to talk about PT for my fibromyalgia. After she ran blood tests even though I just had some done, I finally got the script in hand!

Wait! It was set for three times a week for eight weeks. Who was she kidding? She knew I spent about a month and a half in bed because of multiple cold and flu viruses that she treated me for herself. How did she think I was going to do PT three times a week?

I decided to try a new PT clinic. Thankfully, the moment the therapist saw the three times a week, she shook her head and said, “No, that’s too much to start.” I was relieved.

Then, she apologized. “I’m sorry, but I have to ask these questions for this form.” I was taken aback by the apology, but not for long. All the questions pertained to an injury or surgical type of situation. Type of injury, date injury occurred, what joint (single, not plural) is affected, what range of motion or physical activity is the goal, etc.

Where is the form for people with a chronic pain condition? Why isn’t there one? The previous PT clinic didn’t ask me these types of questions once it was understood I was there for lupus and fibromyalgia.

I have heard others with chronic pain conditions talk about how they don’t like physical therapy. Well, no wonder. I felt so much like I didn’t belong. Not by the therapist who knew these questions were not relevant to me, but by the system.

Fibromyalgia is not a rare condition. Look up any credible medical website, journal, research, etc. They all say it’s common. They all put the numbers at approximately five million people in the United States, some higher. The latest research shows that there is a physical manifestation via MRI scans and tests of the spinal cord and nervous system. This information is not hard to find.

Why? Why are there still doctors who believe fibromyalgia isn’t real? Why are some treatments such as pain-relieving medications taken away and not replaced with other effective treatments such as physical therapy and massage? Why is a fibromyalgia patient treated as if a quick fix of a few weeks of PT should make it all better when it is well-known it’s a chronic condition that often flares with too much or too little activity?

Many doctors, pharmacists, nurses, physical therapists and others do understand. They get it. But others…not so much. What makes them different? I wish I knew. Stubbornness? Pride? Laziness? A lack of caring?

I have lupus and other chronic diseases. But the one ongoing condition that makes me feel like I am slamming my head against a wall the most is fibromyalgia because of the lack of understanding in, of all places, the medical community. I know there isn’t enough research yet. But, come on! Fibromyalgia is not a belief system you either adhere to or you don’t. It’s measurable. It’s physical. It’s testable. How can we make any progress if we aren’t all speaking the same language?

Let’s start with fibromyalgia 101 – it’s real!

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Thinkstock photo via Wavebreakmedia.

Originally published: March 3, 2017
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