Fibromyalgia Myths

I use the word myth because they just aren’t true. I haven’t found a decent way of getting this across to some healthy people, so if anyone has any suggestions on that, please comment:

Myth 1: Fibromyalgia doesn’t exist. It doesn’t? Well that’s great news for me!

Myth 2: Fibromyalgia is all in your head. Not true and even if it was, it’s still a disease until head transplants become more common.

Myth 3: Fibromites are just lazy or have less of a pain tolerance.  The standard from several books I’ve read seems to be it hurts us 10 times more and hurts ten times as long.  It takes me infinite more energy, courage, sticktoitiveness (thank you The Simpsons for that word), and non-laziness to put on shoes then it does for a normal person to run a marathon. I deserve a medal.

Myth 4: Fibromites just want attention. And what a great way to get it, if I wanted attention I would dye my hair pink and invent my own language, there would be much better ways of going about it.

Myth 5: Fibromyalgia stems from alien abduction. I won’t honor those sites with a link, but yes they actually believe that fibromyalgia is brought about by alien abductions, and yes there are multiple sites.

What are your most/least favorite fibromyalgia myths. I give props for the creativity of the alien one, it’s my favorite. Anything I missed?

Fibromyalgia Mini Remission

I’m a happy girl. As I was drifting off tonight I was thinking “this is a good pillow it doesn’t burn my skin”. Then something clicked & I sat up thinking, “holy crap I’m not in pain”. I did a quick assessment & realized I did not hurt anywhere. I haven’t changed anything to trigger this, maybe taken slightly longer naps & worked less. It’s been this way for about 3 hours, although the pain is slowly creeping back in. Even so, this is the first time I have not been in pain in 3 years. No remission, not even a decrease in pain, just for the past 3 years, everyday has been grueling.

I want to wake up everyone with mass phone calls & texts messages telling them to get to my house immediately so they can see how I can sit in an uncomfortable chair & wear shoes. (Yes, I’m wearing shoes right now, at 2 in the morning, just because I can). I want everyone who has shared in my pain to share in my few hours of non illness. I want everyone who has comforted me to be able to sit next to me & watch me have actual energy & vitality. This isn’t entirely practical because I don’t want to mess up anyones sleeping patterns, but a party is in order! I don’t really know what to do, I want to go running, but bad idea I know.  I’ve enjoyed just holding very still & noticing that my sheets don’t hurt me, my clothes don’t hurt me, I can open my hand all the way with no difficulty. I’m sure tomorrow, I’ll be in pain again, mostly because I’m not asleep at 2 in the morning. That’s ok though, tonight I am not in pain, & it is a much needed break. For now though, I’m profoundly grateful, happy, & am going to go jump on my bed.

Technorati Tags: fibromyalgia, health, women, life, remission, random-thoughts, gratitude

Happy Thoughts & Pain

The most annoying & frequent piece of advice I get from healthy people is “just be happy”. I usually reply with “I will as soon as you stop being stupid”. There are always lots of studies/books/rumors spread about pain & happy thoughts. One of the first books I read after getting fibromyalgia is “Love, Medicine & Miracles: Lessons Learned about Self Healing from a Surgeon’s Experience with Exceptional Patients” by Bernie S. Siegel M.D.  I liked this book because it was inspirational & was my first clue that Dr.’s were trained to be a little stand offish and not get emotionally involved with patients. 

Since then, I have grown to hate this book, the book in itself is fine, but when put in the hands of a healthy person it is a very dangerous thing.  It’s a given that anyone who has read this book, or subscribes to the idea of happy thoughts curing pain will become my enemy for life. I have to sit & listen to stories of a person dying from cancer being cured by watching the “Three Stooges” everyday.  Or the one about the little boy who’s chemotherapy never made him sick because his parents told him he wouldn’t throw up and he believed them.  Yes, the mind is a powerful thing.  However, these stories are the EXCEPTION.  See how I typed in all caps, that’s how important it is. There are many happy, chronically ill people who just have to keep going & living in pain.  The general misconception from these kinds of healthy people is I just don’t want it bad enough, or I like being sick.  Great support, that’s going to cure me.  Truth is, I am happy, but it’s very difficult to be bubbly when you haven’t slept soundly in 13 years, when whenever you figure out what you want you can’t accomplish most of it, when you have to nap 5 times a day, & walk like an 80 year old at 24 while everyone else your age is out dancing and even your eyelids & fingernails hurt.  So, I think that happiness probably won’t cure me, but it makes life worth it.  I don’t know if it decreases my pain level at all, but when I’m doing something I like, I’m generally a little bit distracted from it & that’s nice. It’s not like I’m losing anything by trying to be happy, happiness is the goal of most people, so even if I stay sick, I still will have done something that most can’t: be happy.  So, I will always share this theory with fibromites & always fight to the bitter end to the healthy people who ruin it for the rest of us.