Teens & Fibromyalgia
Teens & fibromyalgia
As being a person 19 years of age, and having dealt with this illness since I was 12 years old, I feel this is a subject that needs more publicity. Living in a fairly small city, I am the only young person I have met so far with this illness. It’s more common for me to run into others with it that are 20+ years ahead of me age, and thus “expected”, in some way, to have. So when people first spot me and find out I have fibromyalgia, they generally always say something along the lines of, “Well, you seem perfectly healthy to me!”.
To sum it all up, fibromyalgia Syndrome is a conglomeration of symptoms that doctors up until now have had no ready explanation for. Different illnesses often overlap with these grouped symptoms, triggering the fibromyalgia symp to worsen, and causing a vicious cycle of pain and fatigue to begin. Stiff, sore muscles, and occasionally joints, accompany this disease and often present similarly to arthritis, MS, or Lupus in various ways, depending on the person. Skin sensitivity, “fibro fog”, chronic fatigue, and IBS often accompany the illness. There is such a wide range of symptom combinations that are classed as fibromyalgia, it is difficult tonow where to start.
For more information on FMS, as well as a complete list of common symptoms, please visit http://www.fibromyalgia-symptoms.org/ .
As for me, my symptom list includes:
-Sore, stiff muscles and joints
-depression (because of how sore and tired I always am)
-Fatigue
-unrestful sleep
-Fibro Fog ( best described as a “split focus” where all the focuses are foggy…but not ADD )
-Skin sensitivity/pain (pain occuring during attacks)
– Nausea
-Headaches
-Muscle twitches/weakness
-Muscle Knots
-Difficulty breathing (which my doctor has classified as Reactive Airways…though puffers dot help to allieviate the problem)
I am pleased to report that my more “physical” issues have been brought to a tolerable level of pain – aound 3-4 on a scale of 1 to 10. That’s down from when I was initially diagnosed, where it normally hovered around an 8 or higher. It is now my fibro fog and cognitive difficulties caused by my illness that I am working on.
Growing up with this disease is hard. But its not dealing with the symptoms themselves that is the worst of it – its dealing with the people around you.
To this day, my grandmother doesn’t get the fact I am sick. I’ve had friends come and go, because they can’t wrap their heads around the fact that I don’t “seem” to be hurting, but I do. I’ve gotten very good at masking limps and acting liI’m perfectly fine – only I’m not. And I think this reaction is to be expected in teens. Its a dog eat dog world, in school. Especially when you aren’t all there to begin with!
When I was diagnosed initially, I had just transferred schools and fallen into a difficult bullying dilemna that I couldn’t get out of no matter how much I fought back and “tattled”. I would have to roll myself out of bed and onto the ground because I was so stiff, I couldn’t just sit up. I couldn’t eat until closer to 12pm, as I had awful nausea in the morning for several hours. I was always tired despite getting plenty of sleep, and had a hard time focusing in different subjects at school. I would come home only to go straight to bed and sleep till supper. And then I would eat, and sit somewhere, and stare at spots on the wall – because I simply couldn’t focus enough to read or write after all the effort I had made during the day in an attempt to squeak by in my schoolwork.
I was blessed with a vice-principle during middle school that also had fibromyalgia. She volunteered to go up in front of my class and explain the illness to them while I was home sick for a week. I came back to be greeted with pity and sympathetic glances. Weirded out, I secluded myself further…because I don’t want to be pitied. Only understood and to have the others students get off my back.
Needless to say, it didn’t work, and things just repeated all over again.
Things improved socially during high school, until I was forced to drop out in grade 10 due to the fibro fog becoming so bad, I couldn’t do anything but stare blankly at my work. I went from being an honor roll student to flunking several subjects in a year or two. I was so burned out by the time I did drop out, I slept for most of the ensuing months. Doing things I previously enjoyed took too much effort now, and I would get too sore after doing them.
I was being referred to psychiatrists by doctors, who had heard little about fibromyalgia, or didn’t believe in the disease. I grew to have a huge phobia of doctors that still persists today. I only trust one, and its my family doctor. My first set of specialists that diagnosed me just handed me a few sheets, and told me to “Eat right, exercise, and regulate my sleep cycle”. I was then fired out the door as quickly as possible. It didn’t take long for me to discover exercise made my pain worse, instead of better, and my already balanced diet didn’t influence it at all. Sleep – well, I might go to bed late, but I always made sure I had my eight hours.
The OT and PT that I had seen previously, before I had gone into remission from my Juvenile onset Rheumatoid Arthritis began telling me the next day after seeing these specialists that my pain was all in my head and to stop faking it. I was irate. How could this be in my head when it was all so REAL?
For a young adult, going through these different traumas really carries a heavy toll in the long run. You doubt yourself, lose your self confidence, and feel degraded. You become more and more frustrated, because things you used to excel in are impossible to do, and you take no joy in sitting around all the time, after a certain point. Constantly asking someone to repeat what they had just said makes you feel like an idiot, and people wonder if you were even listening when you were giving your all at doing as much.
Yet, if you asked me if I would take it back if offered – no,wouldn’t. And that’s simply because I discovered my greatest joys due to this illness and the troubles that ensued.
I started to write in order to get away from myself and out of my head. It was soothing, and exciting. And I also discovered I had a talent for singing, which has blossomed into two bands and singing in restaurants.
I’ve joined different fibromyalgia communities online, and found out that yes, it’s not unusual to be diagnosed young with this disease. Its a relief, honestly. I now have an outlet to vent frustrations I don’t dare to my friends and family.
Because of your age, most doctors, students, and family will discount the fact you are sick. My parents have gotten good at seeing the signs of when I’m really out of it. But it’s especially hard when you are asked how you’re feeling and you reply honestly, only to have a puzzled face looking back at you and uttering, “but you look great!”. Or better yet, they try to be helpful by offering different “solutions” or viewpoints, which are generally along the lines of: “You know, maybe the doctors were right and its all mental.”
Awkward silences happen among some friends when you try explain how the illness operates, and that you look fine but you aren’t. Some accept it, while not understanding it. Others question you at every corner.
Family members try to push you to get outside, and do things you know will lay you flat on your back for weeks. And when you cave in and do these said activities, and the backlash occurs – they get angry at you for being “weak”.
So to conclude, if you know a teen who has been diagnosed and dealing with fibromyalgia – please, believe that they are actually suffering, even when they seem “fine”. Do some research, read up on this illness, and learn how to differentiate the bad days from the good. If we start getting into a loop of complaining about how much it hurts, try to tolerate it – when we’re really sore, its hard to think about anything else. And if you lose contact with us for a few weeks, realize it happens because the fatigue and pain are too great for us to want to burden you with.
If you have questions about it, we are generally very willing to discuss it with you. But please don’t start taking an accusatory tone with us, as we are very sensitive to it and WILL bite your head off.
Parents with a child of this disease, please be open-minded. Don’t jump to the conclusion that we are using the fact we are sick as an excuse to avoid doing what you want us to. We might not live up to your expectations, but love us all the same. Realize there are some cases so severe, we grow up and need to file for disability. Support us when we go into the doctor, and be our advocate. Hear our rants and respond in a constructive, understanding way to them. And when we say we’re having a bad day…believe us, even if you can’t tell.
And if you are a teen currently facing being diagnosed with this illness, don’t give up. You aren’t alone. There are more of us out there, if you just google us. The internet will quickly become your greatest ally in dealing with this illness. And if you feel you need someone to to…leave a comment saying such and I will be more than willing to talk it out with you.
Other families dealing with this – if you need another ear, my family is always ready to talk. We never did manage to get in touch with another fibromyalgia family, and are very interested in providing support to new families dealing with fibromyalgia because of this.
I hope that this brief outline of what the last seven years have been for me helps those dealing with someone close to them to understand what we’re going through. And for the one suffering, that there is a light at the end of the tunnel and it is not just their imagination that they are sick.
Written by Sekaya
