Fibromyalgia Isn't What Most People Think It Is

Being a natural observer can be helpful, but it can also be quite the burden. Especially when I notice everything that is said. One of the things I hate that I notice are the comments, jokes and insults made about those living with fibromyalgia. Since I’m one of those people, they can really get to me sometimes. Experiences like this are part of why I started writing about living with chronic illness for The Mighty, and then went on even further to make my own blog about my experiences.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

Over the years, I’ve conditioned myself to either ignore or educate. I rarely get angry about it anymore because it’s useless most of the time. The only time I let myself get angry is if it’s a particularly cruel situation that really does warrant a stronger response. For the most part, the comments seem to be more careless and ignorant than anything. They are made because someone hasn’t taken the time to do their research, or they just can’t understand anything they don’t experience themselves, or they’ve listened to the wrong people.

The facts:

• 10 million people in the United States are diagnosed with Fibromyalgia. 90% of them are women of all ethnicities and ages. (fmaware.org)
• 3%-5% of the population worldwide is affected. (fmaware.org)
• There are many symptoms that someone living with fibromyalgia can experience. Officially, credible sources list anywhere from five to 20 symptoms that patients experience. (If you talk to real fibromyalgia patients, there are actually many more than 20 symptoms that can manifest. I used several sources to get an average number of symptoms listed, among them were The Mayo Clinic, fmaware.org, National Institute of Health and the CDC.)
• At the moment, The Mayo Clinic states that, “Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.” However, much of the research that has been done on fibromyalgia is faulty or incomplete, so it is still mostly a mystery to the medical community.

Those of us living with it know all too well that it’s not understood, and have to deal with the consequences of that just about every time we seek medical attention, or try to get our loved ones to understand that we can’t do something or need help. Especially during the current pandemic, things have been rough. COVID-19 has a track record of being especially hard on those with underlying conditions. While fibromyalgia is not officially considered an autoimmune disease, it has been my personal experience, and that of many others I’ve met living with it, that we do get sick far easier and worse than we did before fibro started affecting us. I have had autoimmune responses, trouble healing, recurring infections and a grab-bag of other issues that tell me I should go ahead and act as if my immune system is compromised, since that’s how it acts, more often than not.

Our lives are not easy, even when all you see is us sitting at home. An average person can wake up at 6 a.m., go to work at 8 a.m., get off at 5 p.m., and continue their daily activities until around 11 p.m. (I know this can definitely vary, but it’s an average day,) go to sleep and wake up at least feeling like they got some rest. Many of us with fibromyalgia do not get the luxury of our bodies repairing how they are meant to during sleep. On top of that, the little sleep we do get is constantly interrupted by pain and other symptoms, so we end up not having the strength or energy to do the things we need to.

My day goes quite differently than the average person’s. My sleep is usually interrupted by pain by 4 a.m. at least once (after not getting to sleep until 1 or 2 a.m..) Sometimes I can go back to sleep, but not often. If I do, it’s only until 5 a.m. and then I’m up, fighting my body to feel halfway normal. The first couple of hours are awful because I’m so sick that the room spins. Once that’s over, I have to take a couple of hours to recover from the whole ordeal (at least). For those of you who have experienced it, imagine the most extreme morning sickness you’ve ever had, and maybe even worse. Every single morning (at least) for over a decade now.

Then, I have to attempt to get something done, because, you know, life goes on around you even while you’re sick. Housework and bills pile up, my family needs my attention and there are animals to take care of. On good days, I can load and start the dishwasher before having to rest. On bad days, I might get a quarter of the way through it (if I even get to start), before having to stop and sit down. The pain that’s always there is magnified by ten on those days, and the fatigue… oh the fatigue.

It’s like trying to move with weights strapped to me all over. Like the day after a huge workout at the gym, except none of the good parts and rather than getting a good night’s sleep after the gym, I went and was in a mosh pit all night (look it up if you don’t know what it is kiddos. Circa 90’s-00’s,) then had to stay up to go to work. Without any of that adrenaline you get, or any of the “second winds” that happen when you are healthy. Sounds miserable, huh? It really is.

“How is it that it’s that bad but doctors don’t make a big deal out of it?” Good question. From my experience, many doctors either don’t know anything other than the basic definition, or they are dismissive of fibromyalgia altogether, seeing it as a diagnosis they make when there isn’t anything else they can find. Friends, family and strangers have a hard time believing it’s really as bad as it can be because not enough proper official research has been done. This has made it be taken less seriously than it should have been, and as fibromyalgia patients, we are now fighting to get the studies and answers we need.

My experience is that it has gotten worse as time has passed. I was first diagnosed over 15 years ago. In the beginning, I was able to maintain a fairly normal life. Now, I cannot work in a traditional job (set hours, in an office, etc.) and much of my life is spent isolated at home because either I can’t handle going out, or it’s flu season, or a pandemic. I’ve had over a dozen surgeries, now have multiple chronic diagnoses, and can just barely remember what it felt like to feel “normal.” I’ve changed all of my eating habits without it helping the pain or fatigue.

When I first started having to really limit my activities because of symptoms, the mental and emotional impact was significant. I first noticed the pain, of course, but attributed it to my cosmetology career. After all, being on your feet with your arms up for eight to 12 hours a day isn’t easy. After awhile, the extreme fatigue started, and the nausea I had experienced in some form ever since I was pregnant with my second child (an emergency c-section, two months early), got worse. Other conditions started rearing their ugly heads, resulting in over a dozen medically necessary surgeries, and countless procedures and medications.

With each surgery, it got harder to recover, and took longer. After about the fourth one, I never felt the same as I did before surgery. I was a little weaker than before, and it never got any better.

There are people with experiences even worse than mine, and we can’t seem to get the medical industry to truly take us seriously and do large studies that get to the bottom of this. Once upon a time, we didn’t understand every disease we have now cured, or figured out how to manage. We can do this same thing with fibromyalgia and significantly improve millions of lives, so why is it not happening? I believe it’s because of the stigma surrounding fibromyalgia. Not understanding it has made doctors and other people think of it as a condition that isn’t serious, or they believe it’s just psychological.

Believe those of us who live with it every day. It’s more than just a diagnosis, it’s our lives. It’s not just in our heads. We don’t have a low pain tolerance. We usually have an extremely high pain tolerance and handle pain that would drop most people while we’re smiling and talking to you. It’s non-stop pain, nausea and many other symptoms that can significantly lower our quality of life and ability to function.

To those of you living with this — you are not alone. Even if it may not always feel like it, you have so much worth and reason to keep going. When you feel like you don’t want to keep going, can’t or are having a horrible pain day — go to chronic illness communities and groups online (like The Mighty) and search for those of us who live with the same things. Read our stories and remind yourself that you are strong because you fight an invisible illness that causes multiple types of chronic pain, extreme fatigue, room-spinning nausea, a variety of neurological issues, and many other symptoms, and still continue trying to function as close to “normal” as possible.