i have fibromyalgia (day)…
Today is national Fibromyalgia (pronounced fy-bro-my-AL-ja) awareness day. When I was diagnosed 13 years ago, no one really knew what in the heck it was. In fact, my rheumatologist at Stanford had to write down the name of THE single book on the subject to order from Amazon.com [this is the 2nd edition of the book] and my doctor at home had no idea what it was. And in all honesty, if the lady wasn’t a nationally renowned doctor, I would have thought she was making up a diagnosis for the crazy symptoms I was experiencing on the spot. But then I started to meet other “kids” who were in the same pediatric pain clinics that I was attending at Stanford and UCLA with the same diagnosis… and then classmates of mine in college started putting that label on themselves as well. Soon enough, my world was filled with moms and sisters and aunts and grandmothers and friends who all suffered from the same thing I did. And suddenly, the world didn’t feel so lonely when I was dealing with a “bad day.”
You may know someone with FMS quite intimately or from afar. Or perhaps you only see those silly Lyrica commericals on TV or in magazines. Either way, you can easily see that this is a problem that really does affect 3-5% of the world population. Technically, Fibromyalgia syndrome affects the muscles and soft tissue. Symptoms include chronic, widespread pain, all-over-the-body tenderness, soreness and flu-like aches, fatigue, problems sleeping, headaches, morning stiffness, memory and concentration difficulties and difficulty performing daily functions. Fibromyalgia pain and other symptoms can be sometimes be relieved or eased through medications, lifestyle changes, stress management, and other fibromyalgia treatment. But since people with FM tend to look healthy and conventional tests are typically normal, a physician knowledgeable about the illness is necessary to make a diagnosis. In fact, many people dispute it as a specific disorder and claim that the diagnosis is too broad or too inclusive… but that really shouldn’t negate the fact that so many people are suffering great pain no matter what causes it. Many tests have been conducted to get to a root cause of the disorder, but so far nothing has been conclusive. They are thinking that the central nervous system is the primary culprit, as studies have shown that fibromyalgia patients experience pain in response to stimuli that would not
ordinarily be painful in healthy people.
My only hope for this year’s awareness day is that EVERYONE learns to help alleviate pain from their body in some way. I was so lucky to learn great pain management skills through biofeedback, meditation and yoga, and I’m a huge proponent of these methods as a coping mechanism for so many issues. However, many times I need to fall back on medical treatment, like acupuncture, to really treat the issue at its source. The pain really never “goes away” completely, but at least it goes back to a level where I can function like a semi-normal human being. I’ve learned not to be a victim to the pain, and try my best to keep it all hidden from both my psyche and the world. I really hope that others can find ways to cope with this and other issues outside of heavy doses of medication, if at all possible. That’s my simple wish. Then again, if someone can create a pill with no side effects that makes me feel like I did before November of 1997… I’d take that too.
If you want to know more about fibromyalgia, there are plenty of websites out there to help you out. My first stop would be FMAware.org, though, as they are one of the oldest and most reliable sources of information out there.
Ali (Mrs French Bulldog)
Good for you, learning not to be a victim of your pain :)
My mom also has fibromyalgia. She’s relieved her pain most effectively through “The Blood Type Diet”. Endocrine Diseases run in my family… I have Type 1 Diabetes and my sister has vitiligo.
Kim, I didn’t know this, and I’m sorry to hear you’ve had to deal with it. I hope you continue to find ways to be awesome you despite the FM.
If you’re interested in an alternative to acupuncture (although I love that too), there is a really great RN / masseuse in Sacramento. His specialty is pregnant and post-pregnant work, but he’s knowledgable about all kinds of health topics.
Here’s his site: http://www.revivetherapyforwomen.com/. The myofascial massage (http://www.revivetherapyforwomen.com/mfr) is especially amazing at helping with chronic pain. I try to see him once a month, and I can really feel a difference all month (and if I skip a month, I can feel that, too).
Thanks for posting this and spreading the word.
Hi there, I love reading your blog, but have never commented before. Today seems like a good day to do that, as I also suffer from fibromyalgia. I ended up in the hospital 3 days after returning from my honeymoon, and never felt the same again. 3 months later a rhumetologist diagnosed me with the disease. It has been a roller coaster ride, but accupuncture and my amazing, supportive husband have been my saving grace (all the meds made me too sick). I also cut wheat and dairy out of my diet which helped a lot. My pain is now managable, but if I exert myself too much too quickly the fatigue wipes me out. I have an appointment in a couple months to have this test done: http://www.greatplainslaboratory.com/home/eng/fibromyalgia.asp. I’m very interested to see if that could be a possible cause and if the treatment helps any! If so, I’ll definitely let you know :)
P.S. As someone who got this diagnosis as a brand new newlywed, I was completely overwhelmed by how it would affect our future. Kids, work, life in general etc. Seeing another person who is able to truly live life with this disease helps so much!