Wednesday, August 31, 2016

I Have Fibromyalgia: Rheumatic Disease Awareness Month

If you are new to the parts of the InterWebs, first off - WELCOME! And second off, there is probably a lot you don't know about me. Sure, at first glance you may assume I am just a happy-go-lucky, healthy female in my 30s, but what you don't see is the invisible disease that haunts me on the daily!

Let's start at the beginning. It was my freshman year in high school. I was a cheerleader and injured my back in a stunt (I was a 'base' and ended up catching the 'flyer' in a way that caused my L4 and L5 vertebrae to fracture which led to me having to wear a back brace while the healing took place).

Well, after the bones healed, the pain never went away. I went to doctor after doctor, getting test after test (MRIs, ultrasounds, scans, etc), trying treatment after treatment (from hard-core narcotics to pulsating acupuncture, physical therapy, etc). 99.9% of the trips ended in frustration and tears when I was told 'everything looks normal', 'maybe it is just in your head', 'you seem fine'. Let me tell you, I was NOT!


Eventually (I would say it probably took a good year of doctor visits, specialist referrals, etc) we finally arrived at a diagnosis: FIBROMYALGIA. Some of you may have heard of this disorder now that they are beginning to release medication specific to it (Lyrica is one of the meds I've heard most frequently mentioned on TV ads or in magazines).

The easiest way I have found to describe Fibro is that I don't fall into a deep enough sleep to allow my bones and joints to get the rest they need. My body is always in a constant state of pain. I have good days and bad days, days where the pain will stay around a 3 (on a scale of 1 to 10) and days where it hurts to breathe or put on clothes because the weight of the fabric feels like it is just too much to carry.

This chronic disorder is 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. (So I guess when I was told "it's all in your head" the doctors were partially correct...)


Women are much more likely to develop fibromyalgia than are men. And people who have fibromyalgia also tend to have a myriad of other issues, including tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety, and depression. [Thus far I have also been diagnosed with IBS and restless leg syndrome.]

There is currently no cure for fibromyalgia, although a variety of medications can help control symptoms (because I was diagnosed at a young age, most doctors didn't want to put me on meds because they would be something that I would likely be on for the rest of my life and weren't sure how they would effect me in the long run). With that said, I was told to exercise, eat healthy, and get adequate rest. Being told at 14 "you won't die from it, but you will die with it" seems like it should be a reassurance but, believe me, talking about your own death at a young age can be slightly traumatic...
I am often asked, once people find out that I deal with a rheumatic disease, how I am able to run with the pain. The answer, at least for me, is easy. If I am going to be in pain no matter what, then I might as well be in pain doing something that I love. Although doctors will recommend exercise as a way to cope with the pain (the thought process is that if you tire your body out enough you will be able to get better rest), I have not found that exercise alleviates any of my issues. I realize that I may not be able to run for my entire life, but I can run today, so that's what I'll do.


Anywho, enough about me, the point of this post was not to lament on my daily struggles (although sometimes it is nice to know that everyone's life isn't as sunshiney as social media makes it out to be - we are real people behind the 'perfect' pictures we share!), but to introduce what is beginning tomorrow: Rheumatic Disease Awareness Month!

September 2016 marks the first annual Rheumatic Disease Awareness Month (RDAM). RDAM was created by the American College of Rheumatology (ACR) and its public awareness campaign, Simple Tasks, to raise awareness about rheumatic diseases like arthritis, lupus, gout, and the 100+ lesser known rheumatic diseases (such as fibromyalgia) that fall under the umbrella term of arthritis.


The theme for RDAM 2016 is, “Hundreds of Diseases. One Voice.” Speaking as one voice, we can improve the public’s understanding of rheumatic diseases and advance the health and well-being of millions of Americans living with rheumatic diseases. But first, we need to learn about the issue and spread the word!

Seeing as fibromyalgia (one of the 100+ lesser known rheumatic diseases) effects me daily, I knew I had to help the cause and share the news about this campaign. Congress is actually introducing a bill to officially recognize September as Rheumatic Disease Awareness Month (RDAM), which is awesome (and hopefully means more funding and research will be dedicated in this area)!

RDAM seeks to increase public understanding and awareness of the symptoms, risk factors, treatment options, personal and economic impact, and lifestyle and health care challenges associated with rheumatic diseases. The hope is that Rheumatic Disease Awareness Month will serve as an opportunity for concerned individuals and groups to advocate for the health and well being of those living with rheumatic diseases and to advance health care policies that help patients access safe, affordable, and effective health care.

Thanks so much for taking the time to read more about me and rheumatic diseases! Wouldn't it be great to live in a world that was disease-free?! But since that isn't a reality, the next best thing is to spread the word and help those dealing with disorders and diseases on a daily basis in any way that we can.

Do you know anyone (besides me of course) who deals with a chronic illness?


SD Mom said...

I would love for you and Serena to live in a disease free world! :-(

San said...

Oh, wouldn't it be amazing to live in a world without diseases? Sigh. I know too many people to count who suffer from chronic illnesses/disorders and I am sorry that you're one of them.
As you said, you wouldn't know from your social media postings that you're dealing with this "behind the scenes". Love your attitude though.

Bree at Clarity Defined said...

Thank you for being brave enough to share this part of your story with us!

I don't have a chronic illness, but I do have chronic pain. I found myself nodding in agreement with "everything looks normal" because I have dealt with hip flexor issues for about five years. It was such a relief when I finally found someone that said, "I believe you" and an even greater relief when they said, "I think this is why you're in pain."

My diagnosis ("your hip bones are bumpy instead of smooth and that is causing impingement") didn't come with a clear solution to my problem. They could operate and take me out of commission with the hope that'd help once I healed from surgery (smooth the bones) or we could wait until I was in so much pain that I couldn't do normal activities anymore or tore something. :\ I do what I can to be smart (no weighted lunges or side plank crunches for this girl!) and so far, so good. Also, ice.

The Silent Assassin said...

My neurologist is actually hoping I have fibro. I ha 11 of the 18 trigger points correctly diagnosed. I am still going through tests because fibro is the "default" end all be all for what I'm feeling. I texted you about it... but I think you changed your number again =).

LisaFH9 said...

I know a bunch of people that struggle with fibro. I actually have restless leg syndrome and I have really bad arthritis in my right knee due to m 2 ACL surgeries and a meniscus surgery this past May. The bone joint in my knee is starting to dissolve. I was honestly surprised to read that your struggle with fibro and I am so glad to see someone make something so difficult to deal with on some days a positive thing.

Chelsea B. said...

Awesome post! I love how you #keepitreal and show us that you are a real person with daily issues and not some superhuman TV character. Live and do what you love as long as you can!!!

Elizabeth said...

This is a great post for a number of reasons. First, I appreciate your honesty and second, I didn't really know much about this illness. I've been dealing with mono/post-viral syndrome since June and I feel like some people don't believe me or think it's all in my head. And it's very frustrating. Especially when they know the type of person you are- you don't strike me as someone who would ever fake an illness. Anyway, I really admire your positive attitude and I hope one day there's more of a treatment/cure for this.