What Has Changed

I haven't felt normal since I was in high school. I don't get sicknesses like the cold or flu very often but I've always felt funny. My head has felt heavy and cloudy and my body has felt sluggish and tender for a very long time. Every doctor said I was healthy, tests looked great. I avoided going to the Rheumatologist for a couple of years because I had the suspicion that he/she would diagnose me with Fibromyalgia, and what would that mean? Would it mean I have been and will continue to be in pain for no perceived reason?

My symptoms include: Body fatigue, extreme morning stiffness, waking without feeling rested, sleepiness during the day, pain when touched in certain "tender spots" (one of the main symptoms observed for diagnosis), anxiety, irritable bowel, and headaches (I don't actually find that I experience Fibrofog, a feeling of forgetfulness or confusion, very often. Though I often have the "I can't think of the right word" issue. The Fibrofog usually comes about later as grey matter deteriorates in the brain. This happens more quickly in Fibro patients than the usual person). Sounds like a flu, but constant. It never goes away. Imagine feeling those things day in and day out, and just "sucking it up" because there's nothing else to do if you want to maintain your livelihood. The symptoms are so general and could apply to many different things, but I've been tested for everything and the tests say I'm healthy. Then why do I feel so awful?

There still seems to be a debate about whether Fibromyalgia is even real. It's difficult to believe a doctor when they have so little information about the disorder. The only way to diagnose Fibromyalgia is to rule out other possibilities (Thyroid problems, Arthritis etc.) and observe a patient's symptoms. Therefore, if I don't believe the doctor, it's like not believing myself or my symptoms. And if I don't believe me, who will?

I felt frustrated when someone said, "Just stay active." If "just staying active" was working, I wouldn't even have gone to the doctor. I often ride my bike to commute, I train Brazilian jiujitsu a minimum of three times a week with kettle bell pre-workouts, I don't have television, I am a waitress.
I am an extremely active person, and I eat very healthily (mostly produce, nothing processed). I go to bed around 10 and wake up at 7.  Nothing about my life suggests that I should be feeling so poorly.

I mentioned to my partner that a friend had said, "Feel better soon!!" in response to my diagnosis. I told him that it frustrated me, but I didn't really understand why. It was as if I just had a simple cold and a little bit of medicine would take care of it. He then got frustrated with me, said I was always negative and that I just wanted sympathy, and that he couldn't handle it.

No. I don't want sympathy. I want support. It's not just a cold or a flu. It's a battle. Medicine is not a fix. I realize that people don't understand what fibromyalgia is; anyone diagnosed with it realizes that no one understands it. Therefore, I understand that people don't know what to say or do, and I think that's what's really frustrating me. Just like anyone battling a disease or disorder, I don't want sympathy, I want people to say: "You can do it!" or "Have you tried..?" or "Keep working hard!" And no, it's not a fatal disorder, maybe I'm not dying, but I could easily lie down and do nothing. I'm begging myself constantly to just lie down.

And now, I finally have an answer to why I've been feeling crappy all the time, and it's not even an answer, it's just the last available possibility, and there's no cure. I feel overwhelmed by the mental battle: Is it real? Is it in my head? Why am I so frustrated?   Even my mother, also diagnosed, doesn't want to believe she has fibromyalgia. Despite the catch-all, she insists: there must be something else wrong.

The only option for my livelihood is pain management. I need to tweak my lifestyle until it works, despite the fact that I already live a healthy lifestyle. I have a couple of things on my list: I will be doing a sleep study, as restless sleep causes stress on the body and is linked with fibro; I will be starting an elimination diet to rid foods that stress my digestive system. I'm not lazy, crazy or ridiculous; I am an inspired person. I want to be good at my sport (BJJ), I want to write novels, I want to be a good partner who is positive about life, I want to stay awake and keep moving. All of these things are made difficult by fibromyalgia. The fibrofog must be broken up.

No matter what goes through my head or other peoples' heads-- these symptoms, they're real.


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