Fibro Warrior Wednesday – Shilo

This week I’m happy to share the story of another Fibro Warrior. This week it’s Shilo from East TN (another southern girl).

Tell us a little about yourself:
I am married and live with two spoiled cats in Tennessee. Before I started experiencing the initial symptoms of Fibromyalgia (my first and only symptom was excruciating jaw pain, written off by doctors as solely TMJ Disorder), I was an Assistant Professor working full-time as an instructor at a community college. I loved my job IMMENSELY, and though it was extremely stressful and taxing on both my physical and mental health, it also gave me a great sense of self-worth, meaning, and purpose in my life.
[Tweet “Some of the BEST things in life come by way of grace, not by hard work alone. via @FibroShilo”]
When were you diagnosed? How old were you at the time?
I was twenty-nine years old the very first time I knew something was wrong. I began having severe and debilitating pain in my jaw, specifically the mandible joint (you can feel this joint on your face if you place your hands on both sides of your cheeks just below your ear, in a Macaulay Culkin “Home Alone” type fashion. Open and close your mouth; you’ll feel the mandible joint move).

The pain in my jaw was like nothing I had ever experienced before in my life. It was a constant ache, as though someone had placed my jaw in a vise grip. In fact, I found the perfect visual to describe my pain when my husband and I watched the film “Casino.” There is a particularly gruesome scene in the movie where Joe Pesci’s character tortures a mobster by placing the man’s head in a table-mounted vise tool and screwing the clamps down tighter and tighter until the victim’s eyes begin to bulge out of his skull (my apologies for the graphic imagery here).

“That’s it!” I exclaimed to my husband. “That’s exactly how my jaw feels when I’m in pain!” But unfortunately, having discovered both the words and a visual representation for my pain did nothing to alleviate it. And little did I know at the time that TMJ/TMD pain is just another co-morbidity (isn’t that such a lovely word?) of Fibromyalgia.

What lead up to your diagnosis (symptoms, dr visits, etc)?
A few months prior to the onset of my jaw pain, I experienced several significant life changes. And when I would go see a doctor about my jaw pain, most of them would easily explain the pain away as a result of the recent changes I had undergone. Within a few short months, I had moved 3 states away from my family, friends, and hometown to a large city I had never even visited before. I was also newly-married, I had started a full-time job with a new college in a new town I was unfamiliar with, and I had been in a low-impact car accident within weeks of the jaw pain’s onset. Looking back at it all now, is it any wonder why the doctors’ merely blamed stress? I was initially diagnosed with PTSD, placed on Zoloft, and was told I should try to reduce the stress in my life, as stress was most likely the culprit for my jaw pain.

And was I under stress? HELL YEAH! Who wouldn’t be? But stress was a factor I’d dealt with my entire life, and it certainly had never caused my jaw to hurt. And my God, the pain was so excruciating! If I arrived home from work before my husband did, I’d lie in our bed and cry so hard my sobs would shake the headboard. I’d scream my head off into a pillow for fear that if our neighbors heard my cries they’d call the police; they’d think someone must be committing a murder next door. I started keeping a travel make-up bag in my car because I usually cried while driving to work. Sometimes I’d dismiss a class early (much to my students’ delight) and once the last student exited the classroom, I’d run over and lock the door behind her, switch the lights off, and proceed to throw up in the trashcan.

My life continued to spiral miserably and inexorably out of control over the next five years! The pain was unrelenting and never ceased. Whereas, before the onset of pain I used to look forward to going in to work, now the only thing I looked forward to was sleeping because it was the only time I didn’t consciously experience pain. I made appointments with every kind of doctor I could think of (neurologists, rheumatologists, headache specialists, chiropractors, physical therapists, neuromuscular dentists, oral maxillofacial surgeons, etc.). I searched relentlessly for ANY doctor who was willing to help me or who offered to try a new form of treatment. But after years and years of searching, no doctor could accurately assess the cause of my jaw pain. And that meant they couldn’t treat it properly either. So with few options left at my disposal, I finally relented and contacted a pain management group. And although they too were stumped when they tried diagnosing my pain, they eventually presented me with two options: either deal with the pain or start taking pain killers. I didn’t want to take pain medicine, but I had a mortgage, a husband who was ready to start a family, and a career I had worked eight years to attain; I couldn’t stop now, so I reluctantly agreed to accept the pain management care.

Four and a half years went by before my pain symptoms began to change. During my final year of teaching in 2010 (I eventually chose to resign because the pain and fatigue had become all-consuming and completely unbearable at work.), I noticed that some of the pain had started to move down the back of my neck and into my upper shoulders. This made it exceptionally difficult to complete even the simplest of tasks at home, such as taking a shower, washing and drying my hair, putting on make-up, getting myself dressed, and driving to work. And yes, I still felt the pain just as intensely as I had experienced it in my jaw and this was WHILE I was taking the pain medication. I was still only thirty-two years old, for Chrissakes! But I felt as though I had turned ninety overnight, and the pain medicine had done very little to assuage my symptoms.

How did your family initially handle your illness?
To this day I consider myself exceptionally blessed because both my husband and my parents never once dismissed my pain, nor did they ever indicate to me that they agreed with the doctors that it might be “all in my head” or simply the result of excessive and chronic stress. One relatively young doctor had actually mentioned the term “Fibromyalgia” during the first year I was searching for answers, but because both the doctor and my family were very uninformed and uneducated about this illness (and certainly because my pain was only felt in my jaw at that time), we all quickly dismissed the notion as irrelevant and not pertaining to my specific symptoms.

[Tweet “I consider myself blessed that my family never dismissed my pain. via @FibroShilo”]

What do you feel is the most challenging aspect of Fibromyalgia?
The most challenging aspect of Fibro for me was reminding myself that I needed to slow down and schedule “breaks” and resting periods throughout my day to give my body some much-needed rest. I consider myself a classic overachiever and over-doer, and in this ultra fast-paced culture we live in today, it often seems like hard work, output, quantity, and production are rewarded and lauded. However, what we neglect in the process of exerting ourselves and achieving goals is the one asset that enabled us to get there in the first place: our health.

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
Once I was officially diagnosed with Fibro in February 2014, I began to research the illness. It was then that I began to realize that some of the co-existing symptoms I had been dealing with for several years were lumped under the Fibro umbrella, such as anxiety (which I’ve struggled with since I was sixteen years old), depression, migraines, severe insomnia, chronic fatigue, a compromised immune system (since birth, it seems, I’ve been dealing with some kind of ailment), nasal allergies, TMJ pain, “fibro fog” (this only began once I started taking Cymbalta), and acute back pain.

The two symptoms which seem to impact my Fibro the most are anxiety and severe insomnia. Whenever I am under an intense amount of stress or feel overwhelmed, my anxiety level skyrockets – sometimes developing into a full-blown panic attack – and I immediately experience a significant increase in pain in my entire body, especially in tender point areas. Likewise, my husband has actually pointed out that on the days when I’ve had very little sleep (if any) the night before, I tend to comment that I’m in much more pain than what is typical for me. Fatigue and the inability to concentrate or focus on anything also become nearly insurmountable obstacles the day after a bad night’s rest.

What (if anything) have you found/ done that has improved your symptoms?
Clearly, then, on the rare occasion when I AM able to get a few hours of sleep, my symptoms seem to improve radically the next day (or at least to the point of functioning, managing, and tolerating the pain). I also noticed a great improvement when I stopped taking the pain medication and increased the Cymbalta to 60mg/day.

I’ve always tried to maintain a healthy diet and exercise, but I’ve found that this is even more important than ever for someone who suffers from a chronic illness. And while there is a plethora of research available both in books and on the web which tout the benefits of a particular diet and/or a specific exercise, I’ve found that simply trying your best to eat a healthy, varied, and well-balanced diet and intentionally scheduling in time for at least 30 minutes of exercise daily can certainly improve your mood, your symptoms, and your overall health.

How open are you with friends & family about your illness & symptoms?
After spending seven and a half years skeptically and yet frantically searching for answers, when I finally did receive a confirmed Fibro diagnosis, I wasn’t initially ready to accept it. Lord knows I didn’t WANT Fibro because my preliminary research had indicated that there was no cure for it, and I was still searching out the “cure” for my pain. Furthermore, one doctor told my husband and I that Fibromyalgia was a “garbage can” diagnosis, meaning that if the medical community couldn’t pinpoint a causality for my pain, then it would be deemed “Fibro” precisely because it had no origin.

It took me about six months to fully accept the idea that Fibro was most likely the correct diagnosis. I first had to do my “English-teacher-nerd thing” which meant reading up on Fibro in the medical journals at our local library, investigating the illness online, connecting with others through online support groups, Twitter, and blogs, as well as some serious soul-searching before I was ready to let folks know I had Fibro. When I finally did announce it on Facebook a few months ago, the response was overwhelmingly positive and supportive. I wish I had done it sooner.

Do you blog about your illness? If so, what inspired you to do so?
As of this moment, I currently do not blog about my experience, but blogging is definitely something I am interested in doing in the near future. At first, I was concerned about starting a blog (who would actually want to read about the trials and tribulations of some no-name country gal struggling to live a “normal life” while experiencing chronic pain?). Instead, I re-renamed my Twitter account and dedicated it to discussing all things Fibro-related (folks can follow me @FibroShilo). My assumption was that maybe a few folks who could relate to my experience would prefer reading a 140-character quip rather than a full blog. And the response on Twitter has been nothing short of incredible!!! In less than two months I acquired 92 followers, most of whom deal with chronic illness or pain on some level every day. Thus, Twitter has instilled a certain amount of confidence in me that a Fibro blog might be beneficial to the greater community of fellow Fibro sufferers.

What is the best advice you’ve received regarding Fibromyalgia?
The necessity of balancing and pacing one’s self throughout the day is probably the best single piece of advice I’ve ever received about Fibro. And it only occurs to me now that this is probably good advice for ANY human being on the planet who is trying to juggle so many aspects of life at once, as so many of us do. Before my life as a “Fibromite,” I was a workaholic; I put work and my career ahead of just about everything else. So if anything good has come out of my Fibro diagnosis, it is the realization that work isn’t everything. Some of the BEST things in life come by way of grace, not by hard work alone.

[Tweet “It’s important to balance and pace yourself throughout the day. @FibroShilo”]

What was the worst advice that you followed?
Some of the worst pieces of advice I ever followed were actually suggested by my doctors (though I try not to blame them since the medical community seems to be just as confused and misinformed about this illness as we are).

Before I was officially diagnosed, I pursued all kinds of “alternative” treatments, such as Myofascial release trigger point injections in my forehead, temples, jaw, neck, back, and shoulders. I also saw a variety of physical therapists, chiropractors, and massage therapists who all claimed they could reduce my pain through physical manipulation of my body. I subjected myself to these torturous treatments for years before I ever actually did any research on them (I went solely based on the suggestion from my doctors at the time). And after every session, I always felt worse than I did before the physical manipulation. It wasn’t until much, much later into my research of Fibro that I found out that Fibro sufferers do NOT liked to be touched because our nerves are over-sensitized. I haven’t attended a “physical manipulation” treatment since learning this information.

What is your favorite way to cope with your life as a spoonie?
Coping with life as a spoonie is a trial-by-error process, and I’d be lying if I said I know how to cope with my condition fully now. In fact, one of the most difficult adjustments chronic illness sufferers will probably ever have to make is realizing that just because a certain coping mechanism works one day or in one particular instance does not mean that it will always work. I know that I am constantly having to adjust my daily routine based on my pain tolerance, not just every day but sometimes hour by hour. This makes it exceedingly difficult to plan social outings or visitations with family and friends. However, when I’m home alone (which is quite often), “distraction” seems to be the best coping mechanism. When the pain becomes unbearable, I try to distract myself by reading an engaging book, perusing my Twitter feeds, watching Netflix, going for a walk, or even just playing with my cats. Anything that will bring me the slightest bit of pleasure or distraction from my pain is a welcomed, albeit temporary, relief.
[Tweet “Coping with life as a spoonie is a trial-by-error process. via @FibroShilo”]

What is one thing you’ve learned about yourself since your diagnosis?
The one thing I’ve learned about myself since my journey with Fibro began is that while my mind or personality may be ardently ambitious, I’m not going to get very far or accomplish very much if my body is not cared for as well. My health has now become my number one priority because everything else hinges upon it: my happiness and my ability to function in life as a wife, sister, daughter, aunt, godmother, friend, Tweeter, career woman, would-be mother, etc.
[Tweet “Your health needs to be your number one priority. via @FibroShilo”]

What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Do your homework/research on treatment advice and join a support group (online or in person). These are two things I wish I would’ve done much earlier in my search for answers. I spent way too many years (and way, way too much money) seeking out treatment methods that are not only ineffective for managing Fibro but also can be hazardous and/or detrimental to improving functionality. That’s not to say that Fibro sufferers shouldn’t try everything at least once in the effort to alleviate their pain (after all, everyone’s experience of pain is different), but if a certain treatment in particular makes you feel WORSE afterwards, then I’d say that it’s not one worth pursuing in the end.
[Tweet “#Spoonie Do your homework/research on treatment advice and join a support group. via @FibroShilo”]

Likewise, I can think of nothing worse than feeling isolated and alone when it comes to dealing with chronic pain (and I certainly speak from experience on this one). I am extremely fortunate because I continue to have my family’s support when it comes to fighting my illness; however, connecting with fellow sufferers online has helped boost my morale and spirits even more because now I know that I’m not fighting this ailment alone.

Shilo welcomes your emails and invites you to follow her on Twitter.

If you enjoyed this interview, be sure to check out past Fibro Warrior interviews, and sign up for my email newsletter to be notified of future interviews and posts on Counting My Spoons. If you’d like to share your own Fibro Warrior story, please contact me.