When someone came up to me today and asked me about fibromyalgia, I thought it was pretty fitting. After all, today is National Fibromyalgia Awareness day. Why is there such a day? Well, most people, unless they suffer from it or have loved ones who suffer from it, have never heard of fibromyalgia. Some doctors don’t even believe fibromyalgia exists. The biggest PR campaign fibromyalgia has going is ads for prescription medications like Cymbalta and Lyrica, which have helped some sufferers cope with the chronic pain.
According to WebMD, fibromyalgia is a non-life-threatening, chronic disorder of the muscles and surrounding soft tissue, including ligaments and tendons. Its main symptoms are muscle pain, fatigue, sleep disturbances, and tender points at certain parts of the body. Many people describe fibromyalgia as feeling like a persistent flu. And while it sounds simple enough, that definition really doesn’t do the disorder justice.
First of all, it has nothing to do with inflammation, it’s not athrititis. Second of all, it’s incurable. If you’ve ever had to live with chronic pain, then imagine feeling it over 90% of your body and you’ll begin to understand what I live with every day. The pain is in my neck, upper back, shoulders, rib cage, lower back, things, wrists, arms, legs, butt and feet. It reaches up from my neck and into my face and jaw, my ears and even my nose.
As WebMD further describes the pain can feel anything like burning sensations to gnawing, throbbing, stabbing or aching pains. I am always in pain. 10 is the worst kind of pain. 1 is the dullest, manageable kind. Today, my pain level is at a 6. Thankfully, the weather is great (humidity causes flare-ups) and so far, the pain hasn’t interfered with work, social activities and the everyday tasks people take for granted.
When I was first diagnosed, it started as a toothache which I believed to be TMJ, a joint dysfunction of the jaw. The dentist sent me to a neurologist who diagnosed me with fibromyalgia. By that point, I had already seen several doctors, including two who told me the pain was in my head and that I was just suffering from depression. But the depression had only started when the pain began to limit my activities.
I needed help getting out of my clothes, tying my shoelaces, cutting my food, brushing my teeth, my hair, cooking, cleaning. I was working as a public high school teacher at the time when I lost the ability to write my name (too painful), could not handle loud noises (so I wore noise-cancelling headphones in class) and discovered that my skin was so sensitive to touch, it felt like it was on fire when people hugged me.
I had to quit teaching full-time. That really helped. I started working out, slowly by slowly gaining strength and muscle. I tried a variety of medications and different combinations of medications but nothing stuck except for a muscle relaxer and painkiller I take as necessary. Acupuncture helped but was an out-of-pocket expense I couldn’t maintain. Yoga works like a natural painkiller. Breathing exercises and working out to the point I raise my heart rate for 30 minutes a day help me cope. After a year of working with a rheumatologist, I was told there was nothing more than could be done, I had to learn to cope with it.
Learning to cope has meant trying to accept that I am not the person I once was. I do not have control over my body. It controls me. I schedule my life accordingly. I never know when the pain is going to rocket from 5 to 10 in seconds. I never know when a rainy day, too much activity or too little, will incapacitate me with exhaustion that feels like the flu. Sometimes I can sleep for 10-12 hours without feeling rested or I’ll be hit with a sudden case of insomnia. Other days, I wake up refreshed and energetic at dawn. I have to be careful because I know that if I don’t get the right amount of sleep, my pain levels rise.
While the pain has become more manageable since leaving teaching, I was barely able to hold down a part-time job as a tutor. When I was laid off from that position, I decided to take up writing. Even though typing always hurts and using speaking software hurts, too. Sure, I can tie my shoelaces but doing dishes, combing my hair, typing, cutting my food, holding a book, are sometimes impossible, overwhelming tasks. Traveling…by train, plane, car…it’s all exhausting.
Going to synagogue is like asking for trouble. Between the noise, the awful chairs, the sitting and standing, my poor motor control, I always end up in more pain that I was before. It’s hard to sit through Shabbat meals, to sit through anything for long periods, without ending up in more pain. This is especially hard considering that when you’re in a lot of pain, when you’re beyond exhaustion, the last thing you want to do is get up and move around.
My knees, wrists, arms, hands, ache chronically from sitting at the computer. I depend on my husband and younger sister for those everyday tasks that escape me. It has been crushing to go from being little Miss Independent to becoming dependent on the kindness and generosity of others to get by day by day.
The fatigue is almost as troubling as the pain. Some days will be good pain days, where the pain is dulled and manageable. And yet on most of those days, my body feels exhausted. I feel ready to collapse. I have a limited bank of energy and I am perpetually overdrawn. Going to see a movie at a theater can sap my energy. Hanging out with friends can, too. Talking on the phone and instant messaging are the bane of my existence, guaranteed to cause flare-ups.
I have been living with this for three years and I still get “but you don’t look sick.” Luckily, I have pretty much warned all my friends against touching me without asking for permission. Only close friends and family really understand what I live with everyday and even then, only other sufferers truly commiserate. A friend of mine says she lost her 20s to chronic pain. Her life, my life, has never been or will ever be the same. I feel often like a rickety old lady stamping my cane in frustration at the healthy people who don’t understand what I’m living with and constantly make totally unhelpful comments.
I’ve said it before and I’ll say it again, if you’re not a doctor, I’m not taking your medical advice. If you’re not a fellow sufferer, I’m not taking going to take your coping advice either. I am not whiny. But if it seems that way, then it’s probably been an excruciating day. It’s not easy but I’m taking it one day at a time, trying to learn to take it easier, slower, and hoping that with God’s help modern medicine will someday make my life a little easier.
If you want to learn more about fibromyalgia, check out the National Fibromyalgia Association website.