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I am a Fibromyalgia survivor.  I was first diagnosed in 1992, at the age of 12, and have been re-diagnosed countless times over the years seeing specialists of all kinds.  In the late spring of 2005 I began taking an experimental drug for Fibromyalgia that wipe the disease away.  One year later, pregnant with my second child I stopped taking it and slipped quickly and painfully back into the world of illness.  Two years later, with my new infant daughter and 5 year old son, I reached an all time health low.  The pain was unbearably severe. The exhaustion was all consuming.  Our life as we knew it was brought to it’s knees.  I couldn’t care for our children.  I couldn’t care for myself.  Rescued by an amazing group of mostly strangers rallied from a local parenting group, we limped along accepting casseroles and prepared snacks for the children, strangers sweeping the floors and doing dishes, friends coming to hold the baby so I could sleep.  It was brutal and for the first time in 13 years I was truly devastated and frightened.  I packed up and headed back to the doctor’s office to ask for help, again.  Again, again, again.  It had been such a long decade.  Because I was unwilling to wean my tiny baby girl I was limited to drugs that might suppress the pain.  I knew this road.  It would work for a short time, but the symptoms would return more severely than before, but I did it anyway.  I went home defeated by my new prescription, and watched and suffered as the pain began to break through and become unbearable again.  I trooped back to the doctor and begged, cried for help.  Together we went over my extensive history, discussed what we could try.  The futility descended on me… so dark it seemed to suck in light.  I had done this.  All of it.  I had done all the New Drugs.  The Promising New Things.  I had been in this thing from the beginning, before anyone had heard of Fibromyalgia, when you still had to explain it to doctors and wait for them to research it.  I had seen the show, over and over and over.  Parading as something new, and always turning out to be the same old pig with new lipstick.  I couldn’t take any of it anyway.  Wasn’t willing.  I could nurse my daughter, hold her, love her, cherish her.  I couldn’t get better.  I couldn’t see the point of weaning her just to exhaust the same old tricks again.  I sighed and looked at my doctor.  “I can’t do this,” I told him, “I’ve done all this before.  Had all these drugs, tried all these combinations, watched my mother do the same.  No one gets better.  This isn’t worth it. ”  He set down the files he was looking through.  Put down his pen and looked at me for a minute, taking me in.  We’ve been here a long time, I thought, absent mindedly wondering if there were other patients waiting.  “Pointless.” was hissing through my ears.

I sighed it out, looked at my knees, and he started talking.  “Yeah, fix it, Doc,” I thought.  I half listened as he told me there wasn’t really anything new.  He wasn’t going to lie to me.  We could try new combinations, physical therapy, blah, blah.  “I have nothing new to offer, not really,” he told me, “I think you should try something else, maybe acupuncture.”

I snorted.  Sure.  Thanks.  Awesome.  I’ll do that.  “Yeah, thanks, I’ll do that,” is what I said.  What I did is go home and cry harder than I ever had before.  I cried out all the disappointment, all the suffering, the exhaustion.  I grieved for the life I would never have, for all the things I would never do.  I cried for the babies that would watch their mother suffer.  I cried for the anger I imagined them feeling.  I cried until there wasn’t a single tear left in the world, then I slept.

When I woke up I felt a tiny kind of bud of peace in my gut.  An acceptance.  In 16 years I had never accepted, and I had just moved through all the stages of grief over the loss of my own life with one good cry.  I had no idea that my life was about to begin.

11 responses »

  1. Hello,

    Thank you for your webpages. Pleaese let me know what kind of supplements and how many you had to get cured? How long did it take to get completely cured?
    I have a fibromyalgia and Im having some supplements but I don’t know how much to have.

    Kind regards,
    Linda Lahtinen
    Finland

  2. Hello Amy, what a time you have been through, I cried when your dear husband was rubbing you back in the video… He certainly is a support to you. I have had Fibro for 7 years now, and it is at its “worst” the pain is shocking. I have had to give up my part time nursing job, … the pain is overtaking my life, and extremely debilitating now. I am 52 years old, had many surgeries and an extremely stressful time in 2006. I was later Diagnosed in 2007. Now the leg pain is so intense, I cry most of the day. Amy, your story was “beautiful” if I can say… in the sense of “you wanting to share your story”… I felt “not alone” and you made me smile when you picked up your daughter in your kitchen… I actually “waved” to you to say goodbye… silly as it may sound, I felt “I had a new friend”.. could you let me know what suplements you take on a daily basis, and how I could obtain them. I live in the Wollongong area of NSW Australia. Take care Amy and a special hello to your wonderful caring husband. with kind thoughts … Deb :o)

    • I have fibro too I am amazed that you are so much better 🙂 I love Ur blog and willingness to share. I’m trying new things too I am going to try tinctures 🙂 thanks!
      Trina
      mom of 2 7/10

  3. Dear Aimee,

    I need to talk with you so badly. Looking at your utube, was like watching my own past. I too, am a red-head! If you will do it, I’d appreciate you sending me your phone number to my email address. There is so much reading and I am a very poor reader….can’t concentrate. I’m so exhausted….

    Thanks for your video…words cannot express my relief to see you and your experience! Hope you are well.

    God Bless,
    Lynn

  4. I have the same thing. What has helped is a beginner’s yoga online, juciing, lots of greens, coconut oil, vegetable based Calcium, Flax seed oil, Glucosamine, wearing tight stretchy braces on painful areas, heat and ice and last but not least a new food product in capsule form that causes new stem cell growth called Laminine. My pain is so much better. There’s a few other things, I’d rather not share on here. Please feel free to contact me at jamieraegro@yahoo.com if you really want help, no spam.

  5. Hello again
    After several months I am just writing now that I have now symptoms of fibromyalgia any more. I had ozone therapy and it really worked!

  6. Hi Aimee,

    I see that you haven’t posted in about a year, how are you doing? I am reaching out because I too am a young mother of a 3-year old and I have been scarily sick since having a virus in March of this year, no diagnosis yet but we seem to be headed in a fibro/cfs direction. I do not want to be told that I will never get better! I find your story very inspiring, I also live in New Mexico and I also plan on healing no matter what, but get so dejected sometimes and the symptoms range from manageable to terrible and I was already (I thought) pretty healthy before getting sick. I would love to see an update for 2013 and would also love to be in touch with you. Best from our family to yours.

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