Monday, November 8, 2010

What Is Managed Fibromyalgia?

What is this managed Fibromyalgia I keep going on and on about? Notice I am not preaching a "cure", a do this or do that and all-your-aches-and-pains will magically disappear approach to treating Fibromyalgia. The very basis of our awareness campaign, The Fibromyalgia Crusade, states we agree there may indeed be more than 1 cause of Fibro, so 1 cure is certainly not going to fix everyone! But there are many levels of misery that fall under the Fibromyalgia umbrella. There is the I ache and am sore and don't have that much energy and don't sleep that well kind. Wilted Lilac to Mulberry-ish. Then there is the I hurt and am horribly stiff and have a headache and am weak and really can't sleep for very long version. Definitely Mulberry sliding into Amethyst. But by far the worst is the I can barely walk and feel like I am crushing myself simply by standing up and am in so much pain, can't sleep hardly at all, my head is in a vice and I don't remember my own name variety. Black Amethyst to LMA. Most of us have experienced the vacillation of symptoms associated with this condition as it fluxes in and out of our daily lives. We complain of pain, Fibro-fog, flares, insomnia, upset tummies, stiff and tingling extremities, oh the list goes on and on. Some can get up each day and go to work. Some can barely get out of bed. And most of us experience both, often in the same week! What gives? What is the goal? What are we shooting for, wishing for, supposed to reach for and work to get to? This is seldom addressed. We are all so concerned with what is wrong and why (neither of which modern  medicine can really answer right now) that we are forgetting to focus on what is really important, quality of life today.

I am managed. It has taken a lot of work and the right doctor (finally!) and lifestyle and behavior modification beyond what I thought I was capable of, but I can actually say I am moving forward in my life, even if it is at a turtles pace. For many years I was falling down that rabbit hole of despair with no way out. Then I sat at the bottom for a long time, each day in my life living hell. In so much pain and so mad, no screw that, FURIOUS about the whole thing. Angry and frustrated. Then I moved to a city where the sun shines over 300 days a year and I could afford to work less and I got with the right doctor and on the right combo of meds and slept for a few years and reduced stress and strangely enough I found myself enjoying life again. Each Sunday stopped consisting of my crying and freaking out because my husband wanted to go do something fun, but the thought of putting myself together and actually doing something after having worked a few days in a row was more than I could manage. His disappointment was apparent, then the guilt that I was ruining his life would set in, but I could not push myself, simply could not get up and do it, and I would wig out and sob and stress myself straight into LMA, I would! No my house was not a happy or fun place to be for many many years. But now we enjoy laughing again, and are establishing life goals, something I refused to do for years because I had no idea what next week was going to be, let alone next year. We spend quality time together and have found that lighter side of life that was hidden by the eclipse of chronic and pervasive illness for so long.

Yes I still have Fibromyalgia. I still have pain, get headaches, have phases where sleep is difficult, forget important things like my step-mother's birthday (I am still upset about that one) and get knocked on my tushie for that one specific week a month, but all in all I am in control of my life, not Fibromyalgia. I am not victim to her mood swings or extreme insomnia or constant and pervasive pain on a daily basis. There are specific things I must do, and when I do them I enjoy the pleasure of a decent quality of life. Not like I was before I got sick, no, that would take a lot to get there. That would take a cure. But I can set the tone for my day, make plans and know I can keep them, have reasonable expectations and watch my progress increase inch by inch. This is what we are working for. This is what I am talking about when I say managed. The first step is to get that sleep and pain under control. The right doctor is a MUST for this. Then there is the emotional, forgiving yourself for getting sick and letting go of past emotional pain. Believing in yourself and your right to a better quality of life. We are usually so darn hard on ourselves! Then there is nutrition and exercise and pacing and indulging the need for sleep that has often been shortchanged for years. I am talking about a holistic, or total body approach, to wellness. No this does not mean no prescriptions. It means look at your body, mind and soul as one entity and nurture all of it. Everything you put in yourself manifests itself in your physical body when you have Fibromyalgia. For instance, that doughnut I just ate, well now my tummy feels not so good! So let's walk this journey together and reach a better quality of living today, for who knows what tomorrow will bring...

Thanks for joining,


  1. the pain of fibromyalgia is controlled by painkillers like Vicodin is prescribed by doctors for their effectiveness and low prescription though, is one of the most abused medicines in the United States, although findrxonline listed in this medication can be by harmful side effects.

  2. Lilly,

    Vicodin, or other opiates, are but 1 way of controlling pain. There are a variety of other medications to manage pain including the 3 approved by the FDA, anti-depressants, anti-seizure medications and a variety of others. I am no expert, just a patient, however, pain medications used for pain management is not an addiction issue. This is a core misconception that serves to further the "stereotype" of Fibromyalgia patients as junkies.

    It seems you believe the only options in pain management are to take opiates or live with it. I am not sure if you have Fibromyalgia and if so how severe it is but the only options are NOT to live in disabled excruciating pain or be a drug addict. We are seeking a quality of life that should not be denied just because we have a pain syndrome modern medicine cannot quite put its finger on the cause of. Thanks for your comment.


  3. thanks for your great posts jacquie

  4. Leah, I'm in search of a new fibro doc and live, like you, in the Phx metro area....sort of. Would you be willing to pass on your doctor's info? I'm on Fibromyalgia Fun House on Facebook--just send me a message. Thanks.
    Kaitey Zollinger