I walked into the exam room, and she had one of the biggest, brightest smiles on her face. She said she was doing so well and was thankful for how I've helped her. She shared,
"You know what Dr. Lenz. I want to run a 5k And wear a bikini."
How did she get to that point? Let's go back in time. Nine months earlier. When I first met her.I walked into the exam room of my last patient of the day.
I sat down and greeted "Shelley," a new patient in her thirties. Before entering, I looked through her chart and noted that she had been to multiple doctors. When I entered the room, she sat on the floor, her knees bent and tucked up towards her chest.
She was accompanied by her highly exuberant, talkative, and curious preschool daughter, who contrasted sharply with her worn-down mother apologizing for her daughter's behavior. I asked. "Why are you here?"
"A co-worker friend of mine told me to see you and that you might be able to help me."
She went on to share her struggles with exhausting fatigue and chronic diffuse body pain.
She had seen several doctors over the last ten years without significant help. We reviewed the electronic medical record together and confirmed all the previous tests that she had done, which all came back normal. She had tried a couple of different SSRIs. She was even tried on some opioids to help assuage her pain, and still, they didn't seem to alleviate her elusive and invisible illness. She looked at me with the expectant eyes of one, anticipating a doctor to be thinking,
"What do you expect me to do about it?"
For those of you who are living with one of these invisible illnesses, when you go to a new doctor, I suspect you're at best cautiously optimistic. In fact, I know that. Many of you who have never heard me speak might wonder what Dr. Lenz can offer when I have seen all of these different physicians. Is there some gimmick? What can I expect? That is the look and feel that Shelly had.
Diagnosis
I went through the widespread pain index and symptom severity score, which showed that not only did she have fibromyalgia, but her combined score put her in the very severe range. If you haven't gotten a chance to listen to one of my first episodes. I talk about the widespread pain index and symptom severity score. It's under the title. Do I have fibromyalgia? It's also a tool used in research to assess improvement over time
I reviewed the revised fibromyalgia impact score with her, giving her a 92. On a scale of zero to 100. It was one of the worst scores of any patients I had ever seen. I realized that the amount of effort she needed to get through a day was immense. I suspected that if it weren't for her preschool child, she probably Wouldn't be doing a fraction of what she completed throughout the day. But her daughter drove her to get an existence to provide for herself and for her daughter.
What has kept you from giving up? What or who keeps you driving on? For many, it's people, goals, or faith. I'd love to hear. You can email me.
I asked her to share her story from childhood until now. She remembers having stomach pains and more since childhood.
"My stomach always bothered me. I always got a lot of headaches. I did okay in school; I mostly got Cs. I had a more challenging time reading than most kids and got distracted easily. I never liked to do homework. I enjoyed keeping busy and playing some sports. I had a hard time sleeping and had growing pains throughout my childhood. My legs ached at night and were restless. In adolescence, my periods were excruciating, sometimes preventing me from attending school. After high school, I was in a couple of tough relationships, but the one I am in now with my boyfriend is pretty good. He cares about me."
I was getting a better picture of her invisible illness by listening to her story; I sensed that she was at least feeling validated by a doctor listening to her narrative and asking questions. I knew she had never been asked before. I further followed up on her story, asking about the possibility of restless legs and periodic limb movement symptoms. She indeed endorsed and confirmed these diagnoses and then went through the Adult ADHD World Health Organization questionnaire version 1.1, which also supported the diagnosis of ADHD in addition to her clinical history.
Why did I investigate the possibility of the coexistence of ADHD? She shared struggles many with ADHD have, including academic struggles, concentration, and not wanting to do homework. And also, it turns out, if you aren't already aware, that many people have chronic invisible illnesses like fibromyalgia and other central pain processing syndromes (nociplastic) have coexisting ADHD, and for many people with co-existing ADHD, treatment can help improve symptoms.
Because the food one eats is important to live better with fibromyalgia but typically suboptimal in those with fibromyalgia for a variety of reasons, I asked her about her diet.
"I'm the only one of my siblings or parents with no history of addiction. She said, Well, except for food."
She shared that her diet mostly lacked vegetables and fruits, whole grains, legumes, nuts, and seeds. It was full of processed and ultra-processed carbohydrates in animal proteins. She met the criteria for our functional dyspepsia, irritable bowel syndrome, and migraines. But still, she had a look. What did it remind me of?
Her look reminded me of an old neighbor I encountered over Christmas break during college decades ago, which I have never forgotten. "Mrs. C" knocked on my door with fear in her eyes. She was worried something was wrong with her furnace and asked if someone could help. I was the oldest at home then; everybody else was out of the house. And despite having no knowledge of heating the house, I followed her over. Her behavior is one that I had never encountered before. I didn't know what to think of it until a couple of years later when she was killed by her alcoholic husband, who was supposedly showing her the difference between two different guns when one accidentally went off and killed her.
He received a manslaughter conviction. The same emotions reminded me of Shelley.
I shared with Shelly many people with fibromyalgia have been through high-stress experiences.
"What have you been through? "
She shared that she had been raped in high school and sexually abused in her first two relationships in adulthood but has not been through that with her current boyfriend.
"I have never told a doctor that before."
I could see relief and a glimmer of hope in her eyes that there was a doctor who cared. She was now intrigued. What more could there be to offer, then? Just compassion.
I diagnosed her with severe fibromyalgia. She had a coexisting restless leg and periodic limb movement disorder along with ADHD, migraines, irritable bowel syndrome and the complicated multi-directional impact of genetics, stress, sleep, diet, and exercise on these invisible but debilitating illnesses. She had a glimmer of hope and curiosity. We started with education by just talking about fibromyalgia, restless leg, ADHD, migraines, and IBS.
I asked her if she was interested in getting better and if she'd be open to changing her eating habits if it would make a big difference in how she felt.
She said I'll do whatever it takes. I think that people underestimate the power of their food choices.
She started changing her diet to a whole food plant-based diet in addition to treating her restless leg syndrome. I saw her in two weeks, and she slept much better. And the stomach pain plaguing her since she was a child was gone. She also lost a few pounds, and her energy was improving. Her fibromyalgia impact score was cut in half in the first month.
We then started treatment for her ADHD, calibrating the dose to find the most therapeutic window where it was helpful but not causing any side effects. A couple of months after her first visit with me, she felt the best she had ever felt in her life. Her fibromyalgia impact score had dropped into the normal range. She also had been tracking her steps with an activity monitor, which had also gradually made strides, increasing to about 10,000 steps a day on average. A massive increase from before. Her whole demeanor was changing. The biggest smile replaced her timid, depleted former self.
It was about nine months since I first met her. And about 60 pounds off her former 280 pounds. She shared with me a goal she would never have considered previously, nor would I have ever suggested.
"Dr Lenz, I want to wear a bikini and run a 5k."
Living with an invisible illness can be a lonely and exhausting journey. Many individuals face daily battles with conditions like fibromyalgia, chronic pain, and ADHD. They search for answers, hope, and support, often feeling misunderstood and overlooked.
Setting the Goals
At the heart of Shelly's transformation was the power of setting goals. Whether personal, health, or financial aspirations, goals provide us with direction and motivation. Shelly realized her health was important and started setting goals for herself. From wanting to be healthier, control her weight, and manage her chronic conditions, she took charge of her life.
Struggles on the Journey
Shelly's journey was not without obstacles. Like many others, she struggled with weight loss and the frustrating cycle of losing and gaining it back. She faced crippling fatigue, chronic pain, and a myriad of other symptoms associated with fibromyalgia. Alongside her invisible illnesses, Shelly encountered high levels of stress and trauma, adding further complexity to her path toward wellness.
The Power of Narrative Medicine
Through the power of narrative medicine, Shelly found solace. The importance of having a doctor who truly listens and validates patients' experiences cannot be understated. Shelly felt seen and hopeful by sharing her story and having someone genuinely interested in her well-being. Narrative medicine enabled Shelly and I to piece together the puzzle of her invisible illnesses, leading us to discover her coexisting conditions.
The Comprehensive Approach
The comprehensive approach to Shelly's health became the cornerstone of her transformation. Understanding the intricate connections between lifestyle, diet, sleep, and medical management, I offered a holistic plan.
Celebrating Victories
As Shelly diligently followed her comprehensive approach, victories began to accumulate. Her fibromyalgia impact score decreased, and she experienced better sleep, improved energy levels, and significant weight loss. Her progress empowered her, creating a positive feedback loop that fueled her determination to achieve even more.
Unveiling the Unimaginable Goals
After months of dedication and hard work, Shelly unveiled her unimaginable goals. With a beaming smile, she me, "I want to run a 5K and wear a bikini!" This statement, symbolic of her newfound confidence and strength, encapsulated the resilience of the human spirit when faced with adversity.
Inspiring Others and Creating Change
Shelly's story is a beacon of hope for individuals with invisible illnesses. It reminds us that we can overcome challenges with the right support, understanding, and dedication. Her transformation prompted her doctor to share her story, inspiring others and catalyzing change in the approach to treating invisible illnesses.
Conclusion:
Shelly's journey from invisible illness to empowerment is a testament to the human spirit's capacity to rise above adversity. Her determination, the power of narrative medicine, and the comprehensive approach to her health transformed her life. Shelly reminds us that we should never underestimate the power of setting goals, the importance of a supportive healthcare team, and the impact of a holistic approach to wellness. May her story inspire and ignite a sense of possibility within each of us facing our own invisible battles.