Familial Mediterranean Fever: A Painful Chronic Illness That Disrupts the Lives of Many

Sharing the challenges of living with chronic illness.

A man getting out of bed and feeling ill.Photo byAndrea Piacquadio/Pexels

A day with Familial Mediterranean Fever goes a little something like this:

You meticulously plan your day. Work, lunch with friends, then a little yard work after dinner, all carefully plotted on your calendar. You know it’s going to be a good and productive day.

Then you wake up, and everything changes in an instant.

Life with Familial Mediterranean Fever (FMF) is a constant roller coaster. Perhaps the worst part is that most of the time you have no idea what is coming next. It’s like getting on the scariest roller coaster blindfolded.

Before we discuss more about coping with FMF, let’s take a quick overview of the disorder.

Familial Mediterranean Fever Overview

Familial Mediterranean Fever is a rare auto-inflammatory disease that causes periodic fevers and excess inflammation throughout the body.

FMF affects roughly 1 in 200 people from the Mediterranean region and 1 in 1000 in the general population. The inflammation the disease causes tends to center on the abdomen or around other vital organs, causing both pain and organ damage.

The periods of fever and high inflammation are called attacks, and usually last 12-72 hours, though some patients experience symptoms for 14 days or more. Doctors can identify the condition using genetic testing where it often shows up as a mutation in the MEFV gene.

Now that you know a little about this rare disease, let’s take a closer look at how it can affect your day.

My Life With FMF

A doctor diagnosed me with Familial Mediterranean Fever in 2016, after 10 years of grueling medical tests and inconclusive results.

This followed decades of inaccurate diagnoses from doctors unwilling to peer deeper into my unexplained symptoms. Finally, one internist was willing to go the extra mile and stumbled upon a diagnosis that most of us, including the doctor himself, had never heard of.

As with any disease, each patient’s experience with FMF can be very different.

There are a lot of similarities between patients, though, so you may well relate to my experience during a typical FMF day.

Usually, I know what kind of day it is going to be as soon as I open my eyes in the morning. Sleep can be a big problem with FMF. During the attacks, the pain may be so intense that rest is impossible. On the better days, I do sleep, at least some. It doesn’t help that I also have Bipolar 1, but that’s a story for another article.

A man lying in bed and feeling unwell.Photo byAlexandra_Koch/Pixabay

My attacks seem to almost always start during the night.

Often the first symptom is a sore throat, though attacks can also start with general malaise or a feeling that something is off. I wish I knew the cause so I could change the trigger, but FMF doesn’t seem to follow a pattern most of the time. However, things like stress and strenuous exercise seem to trigger some flares.

Once I wake up, either during the night or at daybreak, pain and nausea will quickly let me know it’s likely to be a crummy day.

On the pain side, it’s very much like having the stomach flu.

The fever causes chills that frequently causes me to shake. It also causes aching body pain, especially in the abdomen. Everything hurts during an attack, but depending on where the inflammation is attacking, the most intense pain may be localized to specific joints or areas. Neck, shoulder, and chest pain are also regular occurrences for me.

FMF has also created widespread neuropathy, which is its own sort of torture.

Dizziness, Vertigo, and Nausea

Similar to a roller coaster ride, dizziness or vertigo usually accompanies an attack.

You should understand there is a difference between being dizzy and having vertigo.

Dizziness is a lot like that light-headed feeling you get when you stand up too quickly. It’s annoying and can limit some activities, but usually, you can function with it.

Vertigo is more of a constant spinning. It’s like getting off a merry-go-round that has been going too fast. Things continue to spin even once you get off. Vertigo causes the spinning sensation even while sitting or laying down and can induce vomiting. It often forces you to stop all activities until the sensation departs.

There are two schools of thought on the causes of nausea.

One doctor told me that the inflammation pressing on my organs was the cause. However, a nurse, who herself lives with chronic illness, explained that nausea and dizziness are common reactions when your body is dealing with immense and prolonged pain.

Think of slamming your finger in a car door.

If you’ve ever done it, you know how fast pain can make you nauseated while the world spins.

I tend to agree with the nurse on this one.

Choose How To Handle the Bad Days

Once I’m awake and see it’s going to be a rough day, I think about what to do next.

If I can, I get out of bed and drag myself to the bathroom. Some days, taking a shower takes everything I have. After I’m clean, I drag myself back to bed where I spend the rest of the day.

When I have appointments or work scheduled, I have to contact everyone to let them know that circumstances have changed my plans. Pain causes your mind to be fuzzy and disoriented, making this task harder than you might suspect.

I hate taking pain meds.

They are typically bad for your kidneys, stomach, and liver, so I try to take them only when necessary. If the pain is so severe that I cannot lie or sit comfortably, I start with naproxen. The liquid caps seem to work best for me, though that may be all psychological because it’s the same medicine as the tablets.

When the pain is worse, I may add gabapentin into the mix. Many days, nothing touches the pain, and those hours feel endless.

My goal is always to ease the pain so I can get some sleep. Some times you just have to settle in, grit your teeth, and pray for relief.

To Eat or Not To Eat

You have to learn your body’s specific needs when you have a chronic illness. FMF has caused me to have mild gastroparesis.

Gastroparesis is a partial or complete paralysis of the lower part of the stomach. The lower stomach is supposed to grind food so that it can easily pass into and through the intestines. With gastroparesis, the stomach either doesn’t churn at all or grinds slowly and limitedly. That means that hard to digest foods, such as meat or fresh fruits and vegetables, can sit in your stomach for hours or days.

More pain with more discomfort and more nausea result.

I believe the cause of my gastroparesis is the FMF. During an attack, it is much worse. So, while I am laying there in bed, I have to decide if it is worth eating anything, and if so, what I can eat without feeling worse.

On the worst days, I usually eat little to nothing.

I make sure to keep plenty of fluids (water and juice) in my system but avoid solid food completely. I also make smoothies to give me better nutrition without taxing my stomach. Smoothies usually pass right through, causing no digestive issues.

There is a lot of weakness that comes with an attack. Fasting seems to intensify the weakness, so you should carefully weigh that fact when deciding whether to eat.

Days of Inactivity

An attack for me usually lasts from 2 to 7 days.

Each day of the attack can be unproductive because either nausea, dizziness, or pain make doing anything demanding. Friendships suffer because I frequently need to cancel or change plans at the last minute. I miss a lot of outings and parties and rarely talk to friends on the phone as much as I would like.

Every attack eventually ends.

However, the cycle does not end with the reduction in fever and inflammation. There’s one more fun part of an attack. Of course, that depends on your definition of the word “fun.”

Inflammation during an attack usually is most concentrated in the abdomen area. It frequently causes mild-to-moderate constipation. Not really a big deal at the time, because the attack causes so much pain that you try to make as few trips to the bathroom as possible.

When the inflammation subsides, things start moving again and often quite quickly.

For me, this trend often means that even though I may feel better, I am still stuck at home for another day, or at least much of the day, because it is unwise to be far from the restroom.

Jealous? I didn’t think so.

A man writing.Photo byStockSnap/Pixabay

The Value of Sharing My Story

It may seem like an oddity for me to share my experiences of bad FMF days. I do it for two reasons.

One, if you are suffering from a chronic illness, I want you to see that you are not alone. There are other people out here dealing with the same struggles every day and trying to keep going despite them.

Two, I want healthy people to understand the struggles of chronic illness. All too often, people living with a chronic illness hear, “But you don’t look sick,” or “You just need to push harder.”

These are the absolute worst things to say to some with a chronic illness.

ABSOLUTELY. THE. WORST.

When you are chronically ill, you already grapple with feelings of unworthiness and low self-esteem. When someone says you don’t look sick, it implies that you aren’t really sick. It takes away all validation from you.

But you are sick, and so am I.

Chronic illness also has nothing to do with strength or motivation. If you don’t believe me, try pushing yourself the next time you have a severe cold or flu, and see how far it gets you. Then, imagine living in that agony every day.

I share my experiences so healthy people can get a glimpse into the life of someone coping daily with a health condition. My hope is these words will help create more understanding and compassion.

Familial Mediterranean Fever makes life challenging, but I’m not giving up. I still live a full life, working during the day as a tax preparer and bookkeeper, and creating online content at night and on weekends.

Chronic illness may slow you down, but it doesn’t have to stop you.

Until next time, keep fighting.