Familial Mediterranean Fever – What is it?

It is insidious and relentless. Stress and anxiety make it worse, and that creates more stress and anxiety. Very few people, doctors included, have even heard of it. What is it? Familial Mediterranean Fever (FMF).

Likely you have never heard of it either.

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Disclaimer:  The writer of this article is not a medical professional. While links will be provided to authoritative sources, this article and the Living Successfully with FMF Series primarily describes the experience of the writer. If you think you may have FMF, you should discuss the possibility and any symptoms with your doctor.

Why would I want to post about FMF on a website geared toward mental health advocacy? For two reasons. One, there is very little information available about FMF. Two, it is a condition that I endure along with my Bipolar.

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What Is Familial Mediterranean Fever?

The first question I always get when I tell someone I have FMF is, “When were you in the Mediterranean?” So, let me start by saying this is not a disease you catch. The name arises from the fact that it is most prevalent in the area around the Mediterranean.

Familial Mediterranean Fever is a hereditary autoinflammatory disease characterized by acute inflammation and recurring fever. Inflammation may affect the lining of the abdomen, lungs, and joints. Less frequently, the membrane covering the brain and spinal cord or the lining around the heart may be affected.

Frequent symptoms include:

• Persistent and recurring fever.
• Unexplained pain in the abdomen.
• High inflammation markers in blood tests.
• Generalized body and joint pain.
• Skin rashes affecting the lower legs and occasionally other parts of the body.
• Additional information available on WebMD by clicking this line.
• This line will take you to information from the American College of Rheumatology.

For me, the stomach pain was so severe that often I could not leave the house. There were times I couldn’t even sit up. Sleep was near impossible, leaving me constantly exhausted and groggy.

I typically have a low-grade fever usually ranging from 99.0-100.5 F but at times much higher. My normal temperature is 97.6 F.

Before I finally received a diagnosis, I ran a fever almost every day. It brings additional pain with it and makes me feel cold most of the time. Typically, no matter what time of the year it is, you will see me in a hoodie, even on those 90+ F Tennessee summer days.

Episodes of the disease, called attacks, can last from 2-7 days. For most patients, the typical length is 2-3 days. It’s common to have attacks back-to-back if you’re not receiving treatment.

Dizziness is a constant companion in my experience, but this could be a result of the pain and not FMF.

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Diagnosing Familial Mediterranean Fever

Diagnosing FMF is relatively simple. There is a genetic test that is now FDA approved. Specific gene mutations confirm that someone has the disorder. My mutation is in the MEFV gene.

Even though diagnosing FMF has become easier, it generally takes a very long time to be diagnosed. Many doctors have never heard of FMF. In fact, none of my doctors, including the internist that ultimately diagnosed me, had ever heard of FMF before seeing me.

That meant I spent years seeing doctors of various specialties, enduring test after test, and spending thousands of dollars. Every test came back normal with the exception of high markers for inflammation. It was only that small piece of evidence that kept me from believing that it wasn’t all in my head.

Many doctors feel it’s important to rule out everything else before even considering FMF. Several patients have reported how they had their appendix or gallbladder removed before receiving an accurate diagnosis.

FMF is generally a hereditary disorder caused by receiving a recessive gene from both parents. I say “generally” because no one in my family has any signs or symptoms of the disease. One study I read (I will add a link when I find it again) stated that up to 15% of new cases had no family background. 

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Treating FMF

The most common treatment for FMF is colchicine, the same medicine frequently prescribed for gout. In many patients, colchicine is able to stop or greatly reduce the number of attacks.

I have not been so lucky. Colchicine has done a lot to decrease the amount of abdominal pain I experience, but I still typically have an attack every week and run a fever almost every day.

During a bad attack, the pain is so severe that even walking becomes difficult. Happily, I don’t have as many severe attacks now that I am taking colchicine daily.

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Enduring FMF

Through online communities, I have been able to connect with a few other FMF patients. A common thread in all our experiences is how greatly the disease can limit normal life.

One single mom recently posted how her daughter is suffering from the illness and has spent much time away from school and in the hospital. The daughter is only 14 years old. My heart breaks for her.

The disease can be devasting, but life does not have to stop. Learning to pace yourself and to rest when you need to can reduce the frequency and intensity of attacks. Proper nutrition and low impact exercise are equally important.

FMF forced me to quit my regular job and find options I could do from home. That has helped me a lot. The freelance work I do now is not based around punching a clock. If I need to spend a day, or part of it, in bed the work is still there when I feel stronger.

Most things are an effort for me, whether it is working in my yard or spending time with friends. Finding a balance is a constant struggle. I’ve learned repeatedly, and the hard way, that pushing myself when I am already starting an attack only makes the attack more severe.

For now, I keep going. I won’t be kept down. Neither should you.

Keep fighting.

You can read more about a typical day for me in the post: Familial Mediterranean Fever – A Day in the Life or read more about the condition in the Successfully Living with Familial Mediterranean Fever Series.

Do you or a loved one have FMF? Please share your experience in the comments.

Until next time, keep fighting.

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