As I write this my knees are going through a certain type of puberty, trying to decide whether they want to be hot or cold. In truth my knees are swollen and I keep trying to get my husband to buy me new knee caps but it seems that he isn’t going for it.

Fibromyalgia is, in reality, a pain. I could say a pain in the butt, but that’s not the only place that hurts.

Where did it start?

When I was in 10th grade of high school, I had an unusual pain in my chest for no reason at all. It got to the point that my parents had to take me to the hospital. I was told that I had costochondritis, a pain in the chest cavity due to growing. The thing is I stopped growing when I was twelve. Instead of growing taller my waistline did increase, whether by puberty or just bad food choices. I was told that my chest will feel better in a few months and I should just take my Ibroprofen to help with the pain.

The thing is I absolutely hate taking medicine. I hate the taste and no matter how the flavor changes to resemble something like passion fruit, my mind still knows that I am taking medicine and it will not be fooled.

I spent the next two years of high school is terrible pain and not knowing what to do. I had flare-ups all the time and sometimes for no reason. Mornings were hard. I missed more days of school than I wanted to. I put on my happy face through each doctor’s visit, each time I had to tell others that I was in pain, talking to my parents about what I was feeling. It was a struggle and I hated every minute of it.

I tried my best to enjoy the years of high school despite my 4.0-grade point average I almost did not graduate due to my multiple absences. I would miss weeks at a time or go to school for three days out of the week due to the intense pain I was feeling.

The Misconception

I found out early on that people have a hard time understanding a pain they cannot see. My parents thought I was being bullied in school and that’s why I was “faking” sick. This might be the point where you get upset but please don’t. It’s the past and nothing can be done about it. I won’t go into all the things I had to deal with my family because well they may be dysfunctional but they are the only family I had back then.

When you can’t see the pain that someone else is feeling, you tend to not understand the severity even when you are trying so hard to be sympathetic. In a sense, I can understand how someone with a mental illness may feel. Sure they can fake it on the outside, while on the inside it pulls at the seams of their sanity.

I am always in pain. ALWAYS! I don’t think you understand what I mean. I am in pain in the shower, when I am sleeping (the pain sometimes wake me up and keep me up at night), when I am cooking, hanging out with friends, in church listening to a sermon, and most of all right now. It is a constant thing. My tomorrows are compromised. I cancel plans all the time because even if I make then in a time when my pain is low, the day of my pain will skyrocket and I am then stuck in bed with ice under my knees and a heating pad on my back. It does wonders for my self-esteem. (Please note the sarcasm)

What Helps?

A diagnosis.

Actually being told what’s wrong has been some of the greatest news I could have ever heard. I had “chronic pain” for 8 years before I was told what was wrong with me. And yes I was tested multiple times for all the same things. The crazy thing about Fibromyalgia is that if you aren’t having a flare-up in the time of your testing it becomes hard to find out why you are in pain.

Ice helps me when my skin feels like it’s on fire. When I have sharp stabs of pain I use pressure to help me reduce the pain. When it is a discomforting sort of pain, heat helps. Yes, I do take medication but it doesn’t help very much. I have a high tolerance for most drugs. No opiates work in my system. Yes, I have tried CBD oil and it worked… for three months and then the pain was back.

How I cope?

I will not lie having fibromyalgia can be a real test of will power. For me, there is no off button for the pain. Every now and then, the pain becomes manageable and I will pick back up my workouts and creating interesting recipes.

My tolerance for pain has increased these few years due to the fact that I am not able to give up. I take life one day at a time because at any moment I could have a flare-up. In my life, there are a few constants. And entirely too many wild variables. This pain leaves me guessing at what kind of future I will have.

I keep moving forward and refuse to let the bad days, weeks, months, and even years get in my way. Do I always succeed? No there are weeks when the only strength I have is to raise my hand to ask for help. There are moments when I lay in bed crying, frustrated at the pain, pissed at life for the hand I was dealt.

There are so many things in my life I had to say no to, just because of the pain I have.

Do you want to know what really sucks?

There is no cure for what I have. It won’t kill me. I will have to spend every day of the rest of my life struggling with an invisible pain and a demon on my back. I don’t have all good days. I will have to give up some of my favorite foods because they cause inflammation. I will have to say no to vacations, girls’ trips, hiking some of the more difficult trails and every now and then disappoint someone.

It’s not all bad though

I have become a part of an amazing community. People who have chronic pain or some other unknown disorder are some of the strongest people I know. I am both sad and happy to be a part of this group of people. We have a certain understanding amongst each other. Our spouses, friends, and neighbors take on the responsibility to care for us when were are unable to take care of ourselves.

There is a certain kind of hope I have found that helps me to go on each day. Some days my prayers are more like me listing the parts that hurt and asking for a break. Sure I used to be upset with God, but now I just take life with a smile.

Hey when life gives you lemons, make a lemon cake with rum!

Thank you for reading my story and I hope it has brought some type of hope to you if you suffer from something that others can’t see clearly.