A Patient’s Journey
It’s 6:35 AM. The alarm is going to go off in about ten minutes. I’ve been dreading it for the last hour as I’ve done a mental countdown in my head. Yet I’m in too much pain to reach over and turn it off.
Today is going to be a bad day.
Falling asleep wasn’t hard last night. Work was especially tiring yesterday, and I was half asleep by the time dinner was over. It should have been a good night.
But it wasn’t.
Somewhere after midnight, the pain started. First it was my legs, so I didn’t think much of it. That’s not where my attacks usually start. It wasn’t long later, though, that the stomach pain kicked in, and before long, every part of me that was touched by either blanket or sheet was screaming in pain.
Welcome to the world of Familial Mediterranean Fever.
FMF is also known as Periodic Fever Syndrome. It’s a genetic, auto-inflammatory condition that can cause much pain and misery.
For most people, the pain starts and resides primarily in the abdominal region. An attack, as episodes or flares are called, can come on gradually or in an instant and can last anywhere from 2-21 days, though I swear that I have had some attacks that lasted longer.
Attacks can also come back to back. Just when you start to think that you might begin to feel better, a new attack overtakes you.
The disease causes pain by randomly creating inflammation in the body. The abdomen is the most common site of this inflammation, but FMF also likes to attack the heart, lungs, and kidneys. Pain can also appear at any other point in the body.
One time, though we were not able to document it medically quick enough, I endured an altered mental state. For three days, I couldn’t function, talked out of my head, and even drooled a little. I don’t remember those three days.
With the amazing wonders of our medical system (notice the thinly veiled sarcasm
I Am Not a Doctor
It’s important for me to start here by saying that I am not a doctor. I don’t have any medical training with the exception of a Young Adult Medicine course I took in high school. That was over twenty years ago now, and when we started the unit on cancer, I immediately knew that medicine was not going to be my career path. Some of those images still haunt me.
Since I am not a health care professional, I cannot give you the most scientific data or
Personal Experiences Only
What follows in this series in my personal experiences of living with Familial Mediterranean Fever, both prior to and after receiving a diagnosis. I will also strive to tell you what things I have found that work for me and what things have been a complete waste of time. (Spoiler, a sugar-free diet did nothing for me, so you’ll likely hear some about my on-going love for Krispy Kreme doughnuts.)
The other reason I wanted to write this book (hopefully this will ultimately end up a book) was that after my diagnosis, it seemed near impossible to find anything written in English about the disease. Even what wasn’t in English seemed to be rather limited. I found exactly one book on Amazon, and it was not helpful for
Now that I have a few years under my belt after diagnosis, I have learned a few things. So, my hope is, that by sharing what works for me, I may be able to help others who haven’t found their way yet.
Ready? Let’s jump right in.
What Will Be Covered?
It’s going to take me about four months to publish all the posts I have plotted out. Each one will look into a different aspect of living with FMF. There will be tips I have learned that help to make life better, and experiments that were tried with unpleasant results.
Just a foretaste, here are some of the upcoming posts:
- The Long Road to Diagnosis
- To Eat or Not To Eat
- Can I Just Get a Little Sleep?
- CBD – Good or Bad for FMF?
- What is Gastroparesis?
- Practical Advice for Friends and Family
- Plan, Plan, Plan
- Put Your Nap on the Calendar
With each post, I will share my personal experiences, good and bad, about living with FMF. Note: everything will also be slightly colored by my other constant companion, bipolar disorder. Still, I will do my best to keep this series focused on FMF.
The first post will be The Long Road to Diagnosis. You can read it here.