Thursday, May 12, 2016

Fibromyalgia Awareness Day


Usually I don't write posts about my illnesses and medical issues, but today I decided to because when I was diagnosed with fibromyalgia, I was absolutely perplexed. It is still a mysterious illness despite afflicting so many people from so many different walks of life. When I noticed today was Fibromyalgia Awareness Day, I knew I had to share some of what I go through, just so if you or a loved one is ever afflicted, you won't go, "Fibromy-whata?", like I did when I first learned of it.


What is Fibromyalgia?


What Fibromyalgia Feels Like to Me (From Falling Skies)
As defined by the Mayo Clinic: "Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues." In laywoman's terms, this means your body aches, you feel like the walking dead, you can't sleep (or you oversleep), you can't remember (as seen below in My Story), and all of this adds up to make you incredibly curmudgeonly. Beyond those symptoms there are many more, but the basis of all fibromyalgia diagnoses is that. Worse yet, there is no cure, despite many doctors' assurances that if you just get off your butt, the pain will lessen (which isn't the case, in my experience). It can be managed- there are those fibro sufferers who can work, there are those who want to work, and there are those who have so many medical challenges that make it impossible to fathom working. 

Fibromyalgia doesn't discriminate- a few famous fibro sufferers are purported to be Morgan Freeman (the actor) and Frida Kahlo (the artist). The mystery of this disorder is the why of it- we still don't know why so many people have it, or how we got it. I think that may be one of the worst parts of this disorder, other than the symptoms- because it has no rhyme or reason, people make assumptions on what causes it. Speaking from experience, all of those assumptions are wrong, the major assumption being that it isn't real.


My Story



This sounds awful, but I don't really remember when or what age I exactly was when I was diagnosed. I was in the range of 16-17 years old, I'd just recovered from a bout of Vitamin D deficiency (caused in part by my chronic stomach pain/proton pump inhibitor use). Though I don't remember the dates, I do remember what I felt like- every day, I woke up feeling like I'd been run over by a train- and no, that isn't an exaggeration. I've had lots of illnesses in my then-young lifetime, but waking up feeling that is something I won't soon forget, because it happens to me again almost every day of the week even now. 

My primary care doctor had suspicions, but sent me to a rheumatologist to make sure I was diagnosed correctly. After many tests, the doctor told me I had fibromyalgia. I remember asking, "What next?". Even though I knew at that point doctors aren't miracle workers, I expected to be given a magic bean to swallow to eradicate the symptoms. He shrugged at me and told me there was no cure- I would have to "live with it" and it could be "managed". One doesn't say such hopeful things to a naive teenager who believed doctors knew their shit.

Long story short: I thought if I exercised every day, ate healthy food, and pretended I was fine, the fibromyalgia would magically disappear. I mention magic a lot as I tell this because even then, fantasy worlds were my escape. If I did not have my books and my dogs, I wouldn't have been able to cope- I already had chronic stomach pain at that point, which I was also told would go away with time. I tried the then-new wonder drug Lyrica, which ruined my life for a month while my doctor ensured I "gave it a fair try". Every other drug recommended for fibro, I also tried, to little success. Every home and naturopathic remedy was pursued as well, to no avail. The only part of my symptoms that was manageable (somewhat) was my mood, but even an incredibly positive outlook cannot overcome days, weeks, and years of pain. 

By the time I was 18, I had been told, "But you're too young to be so sick," enough times I wanted no one to know what I was in pain, and fumbled my way through my GED graduation party by saying what I had planned to do... if I was well (become a pharmacy technician, then take college courses for something big- like become a doctor who treated patients with honesty instead of platitudes AKA House M.D.).

I wish there was a positive spin I could twist with this post other than the fact that I've survived (at times by the skin of my teeth), but there really isn't. I always, always try to try something new for fibro: I exercise even though it's painful, I try to regulate my insomnia/sleep schedule so I can pretend to be your average human, and I give my doctors cow's eyes and beg whenever a new fibromyalgia drug comes out so I get to try it. For me, the most helpful things to get through the day have always been my trusty heating pad, ibuprofen, Savella (which actually works for me, somewhat), books, and animals- Torrie, Keisha, and George do not allow me to stray from our schedule. 

Although this section of my post may sound dismal, I know someday the cause for fibromyalgia will be found and stamped from the face of the Earth, just as the many other syndromes, diseases, cancers, and maladies will be cured. I know because I have a closet full of high heels I've been unable to wear for longer than ten minutes without pain, and I intend to preserve them until the day I can again wear them (for half a day at least), even if that day comes when I am 90-some years old. I plan on making the best of every day I am given, even if I cannot be who I thought I was destined to be when I was younger- I know that envisioned version of myself could not be nearly as tough and resilient as I am now.

Last year on a bad pain and insomnia day

Some days, I don't look sick. My illnesses are an easy secret to keep (especially online) because they are often invisible. Most fibromyalgia sufferers, like me, are easy to mistake for able-bodied people. When someone tells you they have any medical diagnoses, it's best to just listen, and not assume. They likely don't want your sympathy or pity (or medical suggestion you read about on Pinterest/Facebook), they just want to be honest and live without faking so much around you. Even on a very painful day, I can smile (most of the time it's while imagining I'm a T-Rex and just bit some obnoxious person's head clean off, but sometimes it is genuine). Life goes on, and you have to make the best of what you have available to you, even if it's simply a positive attitude.

In conclusion to this post, I hope you now have some idea of what fibromyalgia is like. Though it varies in severity from individual to individual, I have heard others describe it as feeling like having been run over by a train, so I know I'm not alone in that. The more people who realize fibromyalgia is real, and that many (many) people have it, the closer we come to finding a cure (as you can't find a cure for something no one's ever heard of). 

Until next time,

6 comments:

  1. Thank you so much for sharing your story with us. Speaking out is so important, I think. It wasn't too long ago fibromyalgia was believed to be all in a person's head. Unfortunately, there are still a lot of people who think that. I am going to be sharing your post with a woman I work with who suffers from fibromyalgia. Right now she's feeling as if no one understands what she is going through, especially here at work. She developed it later in her life, and it's been a real struggle for her. I'm sure you understand.

    I don't have fibromyalgia, and so I cannot relate to everything you are going through. I think I've mentioned before that I can relate to some of it though--having an unseen illness, chronic pain (although I imagine mine is nothing compared to yours), pretending everything is fine--what is the phrase, grinning and bearing it?

    I hope they do find a cure for fibromyalgia. I really hope they are actively searching or one. For your sake and everyone else who suffers from it. Thank you again for sharing your story!

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    1. The people who had it pre-2000s had the worst of the stigma, though somehow it remains. My cousin also got fibro (I think she was 28) a few years after I did, and she does manage to work, but not like she used to be able to. She's one of the lucky ones to have an adjustable schedule and a doctor who treats her pain well. I'm not sure if you read it, but Becca @ I'm Lost in Books did a Day in the Life post about how well she's managed with her conditions, one of which is fibro, and it's definitely more hopeful than mine.

      Unfortunately, it's impossible to walk in anyone else's shoes. Sometimes I'll see someone with a chronic illness who suffers, but somehow does so well for themselves in life and I think to myself, "Why can't I do that?" Levels of pain, and even measures of success all vary from person to person. I've learned at some point that as long as I'm living, I'm successful for me. I lived a very grin and bear it childhood, which was why I thought it would work for fibro, but it doesn't. Still, I keep a positive attitude about it... because what else is there to do?

      They keep finding little clues about the possible origins for fibro, which I think is our best chance at a cure (stumbling on a cure for something you don't fully grasp would be sort of miraculous). I'm glad you found this helpful.
      Thanks for stopping by and commenting, Wendy!
      ~Litha Nelle

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  2. I actually have never heard of fibromyaglia so I think that it's so great that you're sharing your story and getting the word out that this exists and people are suffering from it. Fingers crossed for a cure!

    Laura @BlueEyeBooks

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    1. They estimate about 2-4% of people have it, so it's not uncommon for you to not hear of it, especially given it isn't as common in the younger people (though, obviously, there are exceptions). I'm glad you know what it is, now!
      Thanks for stopping by and commenting, Laura!
      ~Litha Nelle

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  3. I is definitely a hard pegged road when you are dealing with a "hidden" illness. Sending all good energies to you. 💜

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    1. Thanks, La La! I appreciate it!
      ~Litha Nelle

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