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4 Lessons I Learned When No One Could Solve My Mystery Illness

Emily Barta

This time last year, I couldn’t get out of bed for more than an hour. Each week came with more symptoms, constant migraines, fatigue, joint pain, poor balance and cognitive difficulties among them. For four months, I traded in date nights and my son’s soccer practices for doctor’s appointments and blood draws. Nurses often took so much blood that I wasn’t allowed to stand up afterward. (No one wanted to deal with a fainter.) I’d watch the needle go into my arm and wonder if I’d ever feel better. Then I’d head home and collapse into my bed or the bathtub, too drained to enjoy a meal or carry on a conversation.

I couldn’t help but worry. How was I supposed to advocate for the care I needed and make sure I got an accurate diagnosis if I could hardly speak in complete sentences? As I struggled to find answers, I learned four important lessons about a patient’s role in solving a mystery illness.

Lesson 1: Notice the toll of physical pain on your mental and emotional health

After my mystery illness showed up, I lost the ability to make it through a day, and then an afternoon, and then an hour of caring for my children. Nearly any activity, from reading a book to writing an essay, came with surging pain somewhere in my body. At the same time, I experienced symptoms of previously diagnosed depression and anxiety more acutely than I had in years. I often tried to get by without pain medication, just in case relieving some of my discomfort might inadvertently mask clues about my health. But when I forced my body to forge ahead in pain, my mental health suffered too.

“Illness triggers fear and anxiety first and most,” says Anna Yam, a clinical psychologist who specializes in medically unexplained symptoms. “Over time, persistent anxiety takes its own toll, leading to fatigue, difficulty with attention — patients will describe this as a memory issue — irritability, sadness and depression, and decrement in functioning across domains of life.”

When you’re so inundated by warning signs of a health problem that you can’t tell which symptoms are mental and which are physical, it’s easy to give up on searching for an accurate diagnosis. Talk to your doctor about the symptoms you’re experiencing, whether you believe they’re physical or mental. Information about changes in your mental health may not lead your doctors to all the answers, but it can give them a fuller picture of what you’re going through and help them care for you holistically.

Lesson 2: Establish a shared language for describing pain with your doctor

“I mean — I don’t know!” I stammered to one of my neurologists. “I’ve had babies! I have no idea what number to give you for a migraine and full-body pain. I can tell you I can’t take care of my children and that I can barely breathe after walking up a flight of stairs.” 

“The pain scale is different for everyone,” he replied. “But it can be consistent for you. You’re not functioning. I think that’s a 10.”

I wasn’t happy about the high pain score I assigned to the drilling in my left temple, but my doctor’s clarification helped me understand the numerical scale better. I could establish what a 5 meant for me and explain it to my doctor, giving him a clearer picture of what I was struggling with. 

If the task of quantifying pain makes you feel uneasy, it might help to remember that describing how pain feels is often as important as determining how much it hurts.

“Although we ask about the pain scale ‘number,’ I believe most physicians and other practitioners would agree that one of the most important aspects of pain in terms of reaching a diagnosis and finding the best treatment option is the character, or quality of, the pain,” says Anneliese Cuttle, medical director of the Emergency Department at the University of Tennessee Medical Center. “For example, is it aching, burning, pressure-like, or sharp and stabbing? Knowing what the pain feels like helps us determine if it’s more likely to be a pinched nerve, muscular pain or something else.”

That’s not to say it’s always easy to describe pain qualitatively, either. If you think poor pain communication is interfering with a diagnosis, it’s worth letting the doctor know.  

Lesson 3: Keep records

It is very difficult to distinguish between physical symptoms stemming from the presumed underlying disease and associated emotional stress,” says Yam. “Patients are rarely able to make the distinction, and in many cases, there is no meaningful distinction, especially when it comes to chronic pain.”

Patients often treat new symptoms like clues they’ve been waiting for, Yam explains. But putting too much emphasis on new symptoms can actually hinder progress toward a diagnosis. Rather than fixate on each new symptom as though it’s the final piece of the puzzle, Yam encourages patients to focus on recording all symptoms so that doctors can interpret their observations.

Cuttle advises chronic pain patients to keep a symptom journal that answers questions such as:

  • What time did the pain start?
  • What were you doing when it started, and for the few hours beforehand? Had you just eaten, and if so, what? Had you just taken a new medication?
  • How severe was the pain when it started? Did it start gradually or suddenly?
  • Did it radiate anywhere? In other words, did you feel it anywhere else in your body?
  • What did it feel like?
  • Did you have any other symptoms that coincided with the pain, like nausea or sweating, or the urge to urinate or have a bowel movement?

Lesson 4: Advocate for yourself in writing and with direct requests

Two months into my ordeal, I discovered through my own research that I had 19 symptoms of Lyme disease. To make the case for Lyme testing, I wrote a three-page letter to my doctors with citations, a symptom list and a recap of my medical tests. Within 24 hours, my PCP had responded to my missive, sent via the patient portal, with a phone call to schedule Lyme tests. 

In the end, Lyme wasn’t the answer. But my thorough, persistent self-advocacy created momentum that helped me move toward a diagnosis faster than I would have. Keeping records empowered me to provide my doctors with as much information as possible, which made it easier for them to pursue answers on my behalf. While forcing yourself to document pain isn’t the most uplifting exercise, it gives you something to point to if you find yourself fighting for access to medical tests or exams. 


Ultimately, the Big Clue was a blood pressure reading that plummeted, instead of rising, when I went from lying down to standing up. Doctors had previously checked my blood pressure while I sat up. But it wasn’t until I saw a naturopath during month four of my mystery illness that someone took my blood pressure with my body in different positions. The blood pressure reading pointed the naturopath to a diagnosis of a collapsed adrenal system. Some doctors use phrases like “adrenal fatigue” to explain this hard-to-nail-down condition, while others remain skeptical of the idea that adrenal glands can even become fatigued. The diagnosis, controversial as it may be, led me to the treatment I needed. 

During the four months I spent looking for an answer, I sat on countless exam tables, had my nerves shocked by electrode needles, and struggled to read an entire children’s book to my two sons, who couldn’t understand what was happening to their mother. The lessons I learned along the way helped me live as full a life as possible in a body wracked by pain. They also gave me a sense of agency during a time when my body seemed to be calling the shots. I couldn’t heal myself, but I could make sure that any conversation about my health included my voice. 

Show Comments (9)
  1. Tracy Schiff

    I’ve been through the same thing. Your suggestions are great. As you sort of mentioned regarding Lyme Disease, you can have all the symptoms of a disease and not have that disease. It’s important not to get too tied up in a specific diagnosis. I was diagnosed with lupus by seven drs. I thought my diagnosis was obvious. I had 9 of the 11 criteria to diagnose lupus. After 20 years of nothing working, a new dr came in and looked at my chart. He saw what the others missed. There is a tendency to accept previous drs at their word. Drs are people and make mistakes. I actually have Stills’ Disease; a 1/100,000 diagnosis. The zebra with the hoof eats..

    I’m now on the correct medication and feel much better. My point is also that many things may have the same symptoms. And drs look for the most common. If nothing works, ask for a re-evaluation. New eyes can be helpful. Be your own advocate though it’s very hard to do when you’re sick….

  2. Christopher Sourp

    What is your prognosis now ??? Are you still at square one ? Are you on the road to any recovery ? God Bless and I hope you get well.

  3. Gail R Taylor

    I am diagnosed with MCTD based on blood work done by a lab that specializes in autoimmune disorders. Breathing normally and having enough energy to get through the day are my main goals at the present time . Nothing seems to be working

    1. Kim Harrington

      I had symptoms like yours and went through every test possible, just to be told I had fibromyalgia. As a vet tech in Texas I encountered numerous dogs that had Lyme and I suspected that’s what I had. A new doctor looked into it and tested me for the illness. As I well knew, the tests aren’t very good so a negative result doesn’t mean you don’t have it. Therefore, a diagnosis of Lyme is often given based on symptoms and ruling out other possibilities. Sure enough, after suffering with severe symptoms for over a year I was finally prescribed antibiotics and the majority of my symptoms went away. I had some residual joint pain and fatigue that have diminished over time.

  4. Beth Staropoli

    Just a quick note as I work in specialty medicine and we diagnose difficult to determine conditions. All of yours are some of them. My advice is one thing, be sure to use specialty testing from a Functional/Integrative MD. Lyme is rarely detected in regular labs if you’ve had it more than a few months. Most often patients will have co-infections which are exacerbating symptoms of something else, hence, confusing MD’s and patients. Proper testing is key. For Lyme, use IGENEX, they are by far the best when it comes to determining vector infections. Test for toxins as well, microtoxins are important. Wishing everyone good health, Beth

  5. RENEE

    I WISH I KNEW WHERE TO BEGIN. FIRST, I HAVE RETINOPATHY AND WITHOUT ME USING ALL CAPS I CANNOT READ IT. I READ THE ABOVE COMMENTS WITH MY MAGNIFYING GLASS. OK, VERY LONG STORY SHORT. I WAS BORN IN 1968 AND BACK THEN EVERYONE SMOKED EVEN IN HOSPITAL’S AND MY NOW HEAVENLY MOTHER SMOKED THREE PACKS OF CIGARETTES A DAY AS I WAS GROWING INSIDE HER. I WAS BORN WITH LUNG ISSUES BUT THEY TOLD MY PARENTS I WOULD BE FINE AND MY LUNGS WILL CLEAR UP. AT AGE 4 I WAS HOSPITALIZED IN CHILDRENS HOSPITAL FOR 6 MONTHS AND DIAGNOSED WITH CHRONIC ASTHMA. THEY PRECEEDED TO PUT ME ON PREDNISONE ( STEROID ) AND (( NO )) DOCTOR EVER TOOK ME OFF OF IT. I HAVE LIVED A LIFETIME OF NOT BREATHING WELL, EVEN ON THE STEROID. IN FEB 2013 I SAW A CARDIOLOGIST BECAUSE I WAS HAVING PAIN IN MY CHEST AND MY DAILY FLUID PILLS STOPPED WORKING. HE CALLED 911 AND I WAS IN FULL BLOWN CONGESTIVE HEART FAILURE. THE NEW DIAURTIC IV THEY GAVE ME, WORKED VERY WELL, SO WELL THAT I LOST 88 LBS OF FLUID. I WAS TOLD THAT I MUST GET OFF OF PREDNISONE IMMEDIATELY BECAUSE MY HEART IS EXTREMELY ENLARGED AND THAT IS FROM BEING ON THAT HORRIBLE STEROID FOR 44 YEARS!!! MY ( PCP ) STARTED THE THREE YEAR WEANING PROCESS AND HE DID WARN ME THAT HE WILL DO HIS BEST TO CONTROL THE TERRIBLE PAIN I WILL ENDURE FOR THE NEXT 3-4 YEARS!!! I DID NOT WANT TO LIVE LIKE THAT BUT I HAD NO CHOICE. THE PROCESS WAS UNGODLY DIFFICULT AND PAINFUL TO MY JOINT, BONES, MUSCLES. i WAS COMPLETELY BED RIDDEN FOR THREE STRAIGHT YEARS. YOU NAME IT, I WAS ON IT AND NOTHING HELPED ME LIVE WITH THE PAIN, SHAKES, VOMITING, DIAHREA, SWEATS THEN COLD…..I WAS A MESS!
    TODAY, I SUFFER EVERY SINGLE DAY WITH JOINT AND BONE PAIN. I AM SLOWLY GOING DOWN FROM OXYCONTIN. I KNOW MY BODY, AND I AM IMMUNE TO IT THEREFORE, I LIVE IN PAIN. I LOST OVER 167 LBS. THAT HAS CREATED ANOTHER NIGHTMARE FOR ME BECAUSE I HAVE ALOT OF HANGING SKIN ON MY STOMACH, LEGS, ARMS AND BREASTS. I GO TO MY PCP AND HE TELLS ME, I’M DEPRESSED AND THAT IS WHY I FEEL SO BAD. I TOLD HIM ( YES ) SHOW ME SOMEONE WHO HAS BEEN THROUGH THE HELL I HAVE BEEN THROUGH THAT IS NOT DEPRESSED??!! I WANTED TO ADD THAT A PHYSICAL THERAPIST TOLD ME AND MY DAD THAT I WILL NEVER WALK AGAIN FROM BEING BEDRIDDEN FOR SO LONG AND EVEN NOW, I’M STILL IN PAIN BUT, I NEVER GAVE UP ON MYSELF AND GOD. I NEED TO USE MY WALKER BUT I AM WALKING. NEXT MONTH I AM GOING TO SEE A DOCTOR FOR RECONSTRICTIVE SURGERY ON MY STOMACH. AGAINST MY PULMONARY DOCTORS ADVICE, I AM GOING ANYWAY. I KNOW MY LUNGS ARE NOT GREAT BUT I AM WILLING TO TAKE THE CHANCE BECAUSE TO LIFT MY STOMACH AND TRY TO BATHE IS ABSOLUTELY IMPOSSIBLE, ITS SO HEAVY. I AM ALWAYS TIRED, MY LOWER BACK JUST SCREAMS WHEN I’M STANDING FROM THE WEIGHT OF MY STOMACH, LEGS ARE NOT STRONG, DAILY CHRONIC HEADACHE’S THAT SOMETIMES TURN TO MIGRAINE’S, WHEN I GET SICK THE FIRST PLACE I GET IT IS IN MY LUNGS. NO STEROIDS!!! I USE A NEBULIZER MACHINE, INHALERS, ANTIOBIOTIC IF A FEVER AND A MEDERAL DOSE PACK. IT IS IN THE SAME FAMILY AS PREDNISONE BUT NOT THE SAME SIDE EFFECTS. LADIES AND GENTLEMEN, I WAS A STRONG INDEPENDENT WOMAN WHO HAD A GREAT JOB, A NICE HOUSE, CAR AND MUCH BETTER HEALTH TO THIS!!!
    I AM 50 AND IF I CANNOT CONVINCE THIS FEMALE DOCTOR OF THE URGENCY OF MY ISSUES, I DO NOT KNOW WHAT WILL HAPPEN. BUT I DO KNOW, I CANNOT LIVE THE REST OF MY LIFE LIKE THIS. PLEASE, I WILL PRAY FOR ALL OF YOU, IF YOU WANT TO, I CAN USE THE PRAYERS AS WELL. GOD BLESS YOU ALL AND LETS PRAY FOR BETTER DAYS AHEAD

    1. Sharon

      Renee – your story and the others really touched me. I will pray for you, dear.

  6. Jen

    Renee,

    I’m so sorry for the struggles you have experienced with your health. I’ll be keeping you in my prayers.

    All the best to you for better days,

    Jen

  7. Larry

    Sorry you ad t go through that. On the surface it sounds like Orthostatic hypotension? but there had to be an underlying cause.
    Be well,
    Larry

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