Living Successfully With Familial Mediterranean Fever – The Long Road to Diagnosis

This post is part of a series about living successfully with Familial Mediterranean Fever. If you missed the introduction, you can read it here.

Just a brief intro, my name is Scott, and I’ve been living with FMF and bipolar disorder my whole life, though I wasn’t properly diagnosed with either for decades. This series looks specifically at the things I have done to live successfully with chronic illness. Enjoy!

One of the most challenging things about Familial Mediterranean Fever is getting the right diagnose. This post shares one patient's long journey to the right diagnosis. | #FamilialMediterraneanFever #FMF #chronicillness #periodicfever

The Long Road to Diagnosis

My story begins in the spring of 1981. (Man, am I getting old.) I was in the third grade and the school year was quickly coming a close.

It was an unusually warm day in central Wisconsin, so my teach decided to take his pack of restless youngsters on a little trek. We walked about a mile on a rural highway until we came to a small white church with a cemetery alongside it.

Our mission was to make crayon rubbings of some of the headstones – honestly, I can’t remember why – before returning to the school.

I have to interject here, especially for my youngest readers, just how different the world was then. There were no permission slips and no parents had been notified about our hike. Our teacher was the sole adult entrusted with keeping us all alive and out of trouble.

Even though we were full of the energy that only spring after a Wisconsin winter can bring, we were respectful students, walked carefully on the edge of the highway, and all made it safely back to the school to catch our bus home at the end of the day.

Well, mostly safe.

Something Is Not Right

As the day wore on, I noticed a slight itching in the middle of my back. Youthful and carefree, I thought nothing of it and continued to play outside in the warm weather.

After a while, though, the itch got a bit more bothersome, and I couldn’t continue to ignore. It took a little contorting, but I was finally able to get my hand in the right place so my little fingers could reach the troublesome area.

Horror rushed through me as I felt something latched onto my skin. Frantically, I tried to pull it away, but it didn’t move, and I couldn’t get a good grip because of the inconvenient position.

Fast as I could, I ran to the house and bounded into my sister’s bedroom. She was trying to take a nap, and was none too pleased with my interruption.

Talking entirely too fast, I belted out what I could. She had me take my shirt off and turn around.

“Oh, God!” she said, looking at my back.

Panic overtook me.

“What is it?” I asked with trepidation.

“Gross,” was all she said. “It’s been there a while. I don’t want to touch it.”

“What is it?” Normally I was a pretty calm kid, but by now I was hysterical.

“It’s a wood tick. A big one.”

“Get it off! Get it off!” I was being eaten alive.

She looked around and found a tissue and tried to pull it off. It took more than a few tries.

We lived in farm country and had dogs and cats. I had seen the disgusting parasites where they’d latched on to a pet and fed until they were about the size of a grape. I imaged a baseball sized tick on my back (because I was bigger than the dogs and cats, the tick had to be bigger) and cried even though I hated to do so.

Obsession Begins

It’s important to know that at this point in my life I had not been diagnosed with Familial Mediterranean Fever or Bipolar Disorder. In fact, it would be many years before I would receive either diagnosis. Still, as you will see, the signs and symptoms of both were clearly evident.

Sleep became impossible after that day. Every time I closed my eyes, I imagined my little body crawling with ticks. I would jump out of bed and turn on a light, sometimes two or three lights, and do a thorough examination of myself and my bed to make sure there was not even one tick in site.

Sleep is vital, and it wasn’t long before I begin to feel terrible. I was afraid to tell anyone why I wasn’t sleeping. Part of me was embarrassed about being upset over such a small thing.

My brothers, frequently unkind, had already picked on me mercilessly just because I had cried during the whole tick removal episode. There was no way I was going to tell them that now I was afraid of ticks that weren’t even there.

The Pain Started

Not long after this, probably right around the time that school ended for the year, which was usually the first week of June back then, I started experiencing a lot of pain.

My legs and arms ached. I had frequent headaches and found that the weight of my blankets was painful. Before this I had always liked lots of blankets on the bed. The weight comforted me and made me feel safe. Now, however, I struggled to keep even a sheet over me.

Both of my parents worked long hours trying to provide for the five of us animals that terrorized their home. I tried hard not to bother them by telling them I didn’t feel good.

Moms know, though, no matter how tired they might be, when something is wrong with one of their kids. She didn’t say much at first but noted how little I was eating and how frequently I went to lay down, both before and after dinner.

Then one afternoon, it was well into summer, my mother came home from work to find me asleep, under all my blankets and wrapped in my winter coat.

She got me into the doctor the very next day.

Test After Test After Test

Then began the hunt to find out what was wrong with me. Every week, or at least it felt like every week, I would go to see my pediatrician. Each time they would take vials of blood, so much that they often gave me juice and cookies after. All of the tests were an attempt to find the culprit responsible for the way I was feeling.

You probably have already guessed what diagnosis I finally received, but you’ve got to remember, this was 1981. Hardly anyone had ever heard of Lyme’s Disease back then.

Ultimately, that was my diagnosis – Lyme’s Disease.

If you’re confused here, stick with me. Yes, this is a post about being diagnosed with Familial Mediterranean Fever. Lyme’s Disease was just one of the many incorrect diagnoses I received over the years.

My family knew nothing of Lyme’s Disease, and there was no internet to consult to answer our questions. Instead, we had one short article from the local newspaper that my mom would carry with her to attest to the fact that even though I looked fine, I was really sick.

If my memory is right, and let’s face it, most days I can’t even remember breakfast, so remembering 38 years ago may not be entirely accurate. . . What I do remember, though, was six months of antibiotics.

I remember the antibiotics clearly because I hated taking it, and it always made my stomach hurt. That frustrated me because I felt like my stomach was already hurting without taking the antibiotics.

There was no recovery. I would have good days or even good weeks, but invariably I would have days where I was shaking because I was so cold. Those days I ran a fever, and everything hurt. Missing school became my new normal.

Four Years Later – Sick Again

I learned to live with my new reality. Like I said, little was known about Lyme’s Disease at the time, so no one was concerned that I never had the tell-tale rash that often appears. No one questioned why even months of antibiotics didn’t seem to kick it, or why I would be better for a few days and then suddenly be back in bed for days at a time.

I remember being cold all the time. I hate being cold, even to this day. It’s a big reason why I now make my home in Tennessee. When it get’s cold here, I want to go further south.

The winter after I turned 13, a new adventure started. In addition to the pain I frequently experienced in my arms and legs, I suddenly developed an excruciating pain in my stomach. The pain would leave me doubled over and more than once took me to the emergency room.

Nothing was wrong with me, or at least, that’s what all the test results said. The fever was evident, but nothing else pointed to a known illness.

Finally, in a desperate attempt to just get rid of my mother, one doctor told her the lymph nodes in my abdomen were inflamed. Once they healed themselves, I would go back to normal. If only that had been true.

You Learn to be Resilient

In time, I resolved that the fever, chills, body aches, and the new stomach pain were all going to be part of my life. So, I set out to live my best life possible.

Familial Mediterranean Fever was something I wouldn’t hear about for decades.

However, in my late teens and early twenties, a new and exciting (did you catch the sarcasm there?) condition took control of my life – Bipolar Disorder.

My Bipolar story is a book in itself, and someday I will write that book. Needless to say, the insanity that became my mind filled so much of my life that I seldom thought about the pain, nausea, and fever I was living with every day.

Familial Mediterranean Fever (FMF) is an auto-inflammatory disease that causes pain, especially in the abdomen. Post from a patient living with it. | #FMF #FamilialMediterraneanFever #PatientStory

Finally an Answer

About five or six years ago, I’d have to consult my journal to be exact, things got much worse. At first, I thought I was just getting the flu over and over again. I would have days of fever, body aches, nausea, and diarrhea. It would eventually pass, and then  just days later it would start again.

Even though my faith in the medical profession is pretty low, I started a new journey to try to figure out what was wrong. My quality of life was nearing zero, and I knew I couldn’t go on that way.

Again, I went through more than two years of tests. Man, how things
have changed. No more was it just a matter of taking some blood and a urine sample. Instead, during that two year period, I endured MRIs, CAT scans, X-rays while drinking something with the consistency of drywall mud, eating radioactive eggs, colonoscopies, upper GIs, swallowing a pill camera, Lupus tests, and so on.

Tens of thousands of dollars went out the window. I was forturnate enough to have health insurance at the time, but my plan had a very high deductible so I ended up spending more than $18,000 out of pocket. I’m still paying off some of those bills.

I was ready to give up. The stomach pain was so severe that it made eating and working difficult. The body aches kept me from ever getting a full night’s sleep, and sleep is probably the most important thing when it comes to maintaining mental health. I simply wanted to die.

God, Please Help Me

My faith and relationship with God are the most important things in my life. I don’t talk much about faith on this blog because I know that a lot of times when you are trying to cope with the craziness in your own mind, the last thing you want to contemplate is some intangible being.

However, I can’t complete this part of the story without bringing God into it. If you don’t like that, please bear with me. It will be brief.

The story goes like this. It had been an incredibly awful weekend. The pain I was experiencing was so severe that even wearing socks hurt. Socks! I had given up eating solid food and was living on yogurt smoothies, soup, and mashed potatoes, but even those things were hard to choke down with unending nausea.

It was the middle of the day. I was laying crossways on my bed, clutching my stomach, and rocking back and forth.

“I can’t do this anymore,” I confided in God. “Please give me the answer or set me free.”

Monday morning I had an appointment with my internist. I was the first appointment and beat him to his office. When he walked in that morning, he was carrying my patient chart. I knew it was mine because it’s about the size of War and Peace, and I’ve seen it hundreds of time.

“I think I’ve got it,” was all he said before he disappeared behind the Do Not Enter door.

There Are Some Good Doctors Left

Knowing my desperation, this wonderful man had taken my patient file home with him for the weekend. He then spent that whole weekend going through the entire chart from beginning to end, making detailed notes on each symptom and each negative test result. More or less he played sudoku with my file until nothing was left.

“I think you have Familial Mediterranean Fever,” he told me when I was finally called back to a patient room.

“Famil what?” I asked him. I had never been to the Mediterranean.

“Familial Mediterranean Fever,” he repeated. “I’ve never heard of it before this weekend, but it’s the only diagnosis that checks all the boxes.”

Thank you, God! I had my answer, and God sent it to me through a small town internist who was willing to think about my case for more than just the ten minutes I was sitting in front of him.

Learning To Live Again

Of course, the diagnosis was just the first step. I will cover the other steps and all the impacts that FMF has had on my life in upcoming posts.

If you are not entirely sick of me by this point, you can read another post on what a typical day with FMF is like: Familial Mediterranean Fever – A Day in the Life.

Be sure to sign up for my newsletter or to bookmark this site so you can come back, because each week I will be sharing more of my FMF story.

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Do you have questions that I’ve not addressed in one of my posts? Reach out to me any time by leaving a comment on any post or by using the Contact Page. I would loved to hear from you.

One of the most challenging things about Familial Mediterranean Fever is getting the right diagnose. This post shares one patient's long journey to the right diagnosis. | #FamilialMediterraneanFever #FMF #chronicillness #periodicfever
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6 thoughts on “Living Successfully With Familial Mediterranean Fever – The Long Road to Diagnosis

  1. You are a courageous person. From the very first day you had your first attack to the diagnosis of FMF you have gone through a great degree of pain, discomfort and difficulty. I feel for you. Any lesser person would have called it quits. Such a lonely journey when one suffers from a rare disease.

    1. Thank you so much for your kind words. I’m no one special but hope that my experiences can help others. We are all coping with something in this crazy world. I appreciate you supporting my blog.

  2. This is a very hard journey and struggle! I hope things will get better
    If I get it right, it’s only from 6 years that you received the correct diagnosis? so what you did all the previous years? Antibiotics? I didn’t get why the name is Mediterranean fever, we live in the Mediterranean and never heard of it…
    when I read all this, I feel grateful for things I took for granted…Thank you for sharing!

    1. It’s been an adventure, that’s for sure. For years, I thought I just had a really bad immune system and caught every bug that was going around.

      The condition is called Familial Mediterranean Fever because that’s the area where it was first identified. It’s a rare condition but does find higher numbers in the Mediterranean area. While it is a genetic condition, about 15% of new diagnoses have no family history.

      Thank you for leaving a comment. I appreciate you.

      1. I can imagine how hard it is! But glad you can publish your experience and probably help others outside! Thank you for the explanation as well

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