since I am now surrounded by a few hundred more people than I ever was this summer, the culture shock is immense. I am just one of many. Not a lot of people know about my condition, and even if they do, not everyone knows just what that condition means.
and so, my fellow students, welcome to Fibromyalgia 101.
what is fibromyalgia?
defintion: a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.
Pain: can be chronic, can occur at night, diffuse, sharp, or throbbing, in the muscles, abdomen, back, elbow, or neck, severe
Muscular: muscle tenderness, delayed onset muscle soreness, or muscle spasms
Sensory: pins and needles, sensitivity to cold, or sensitivity to pain
Sleep: difficulty falling asleep, sleep disturbances, or sleepiness
Whole body: fatigue, feeling tired, malaise, or nausea
Cognitive: forgetfulness or lack of concentration
Hand: sensation of coldness or tingling
Mood: mood swings or nervousness
Gastrointestinal: bloating or constipation
Psychological: anxiety or depression
Also common: acute episodes, headache, irritability, joint stiffness, painful menstruation, or tingling feet
treatment/cure: no cure so far. many people treat fibromyalgia with lyrica (pregabalin) or by diet and exercise.
fibromyaglia for me
mad props to you for getting through the nitty-gritty stats stuff. I almost fell asleep while writing it, so I don't know how you survived.
my symptoms are pretty standard: wide-spread, roving pain, achiness, fatigue, insomnia, increased appetite, bloating, inflammation...the list goes on. I don't think my BJHS is a symptom, because I've always been flexible, but fibro flare ups cause BJHS flares and visa versa. Inflammation, the gift that keeps on giving,
My biggest claim to fame is my muscle spasms/itch attacks. During a flare, my muscles tend to freak out and go spastic. It's kind of terrifying. The first time it happened, I thought I was having a seizure. My longest episode lasted an hour or so. The itching goes hand in hand. It's gotten so bad that the only way to keep my face from itching constantly was to rub it on the carpet. The terrible thing is that scratching the itch does absolutely nothing. The only way I've found to stop it is to numb the skin. Icepacks are my best friend.
Two other strange symptoms are my inability to feel regular temperature and my heightened senses. At times (especially during flares), I cannot tell what temperature I am or what the room feels like. Sometimes it's regular temperature and I feel like I'm running a fever. Other times everybody will complain about how hot it is and I'm happy as a bird. It is beyond weird.
The hypersensitivity to light, noises, and touch is due to my hyperalgesia (heightened sense of pain). My brain is takes too much in and then says it's bad. I basically turn into a quivering mess. The fourth of July was hard. I like staying inside where the sun can't find me and blind me and hurt my skin (i'm literally a vampire). Crowds affect me more than usual. I'm not giving up my concerts, though. I will persevere for that.
what do I feel like on the rough days? Imagine you're just a skeleton. Your bones are coated with this burning gel that shifts from one bone to the next or sometimes just oozes all over. Your feet ache. Your hips ache. Your right shoulder ESPECIALLY aches. Couple everything with an almost migraine, a stomach ache, and a bout of depression and you've got how I feel approximately every five days. And that's on drugs. Not on a flare.
You don't want to think about that. Getting out of bed at that point is hard enough.
You guys know the story of how I got sick, or at least you know enough to get by. I'm controlling my condition with physical therapy and diet, as well as taking supplements. I still have pain, but it's not as bad. I can do so much more. I almost break down when I think about how normal I feel. My PT put it this way: "You're basically at the level of an average person's ability--you just need to be more careful and more aware than they ever will be." And she is so right.
fibromyalgia to you
so what does all this gobbledegook mean to you? Honestly, not much. Most people don't notice I'm sick, and that's fine. If I needed help/sympathy, I'd let you know. But there are a few things I'd like you all to be aware of.
x. fibro affects my moods
last semester I started out as a very happy, social person. I ended last semester as a very unhappy, sick, broken, and anti-social person. I am depressed at times. I fully admit this. I am also very anxious--about my health, about walking, about food, about friends... I am not angry or mad at you if I seem like I am in a bad mood. I'm just dealing with a lot in my head and I need you to understand that. I also spend a lot of time by myself. As selfish as this sounds, this is pretty much a need for me. Because I am so exhausted, my social energy drains out quickly. I sat with friends at lunch for an hour or so today. I then needed three hours by myself before I felt like talking to the next person. So i'm sorry if you want me to do all the things. Sometimes I just need me time.
x. my immune system is tired
Fatigue is still a daily thing for me. My immune system is working overtime, and I can't risk getting sick because a simple cold has the ability to knock me out on the couch for 2 weeks at least. If I spend prolonged time with you, I would appreciate you letting me know if you are coming down with something, feeling under the weather, already sick, or recovering from even just a teeny weeny cold. Please please please please. I may not get sick, but I can't take that chance. You alerting me allows me to up my supplements to keep the bug and the couch away.
|me when people cough in my face|
x. i am slow
Remember that careful thing? Yeah. No running for me. I am clumsier than the average person. I sometimes need to walk carefully or I might collide with a wall or the carpet or a stranger. I also have what's called fibro fog, especially when I am in the middle of a flare. My brain just doesn't work, to put it in a strictly non-sciencey nutshell. It takes me some time to find the right word, or for me to understand something, or for me to make up my mind. Just be merciful--to everyone, not just people experiencing fibromyalgia. We all have our sucky moments. And sometimes all it takes is someone being merciful to turn things around.
x. i miss cheese.
please please don't ask me out for ice cream. I might cry.
x. i am still human
I might have a mysterious condition that more people have than you'd imagine, but I'll still just a 19 year old girl. Don't feel like you need to baby me. If something's too much, I will let you know. I am not above making people carry my backpack. Kendal knows this all too well. My favourite part about this illness is that I know I can live with it. I'm not normal, but I fake it pretty well. And if you can fake it too...well, it adds to the facade.
so that's that! You all are Fibromyalgia 101 veterans now! Way to be! Seriously, it means a lot to me that you took the time and scrolling energy to read this. If you ever have questions about fibro, or even celiac or BJHS, do not hesitate to ask. My head might spin around, and I'm not an expert quite yet, but this is an unending course in my life, and my goal is to understand it as much as I can.
I hope you have something your life you feel this strongly about too. Just not a chronic illness, I hope! I wouldn't wish that on anyone!
see you guys on Thursday!