My Fibro Story

I’ve been battling with the idea of sharing my Fibro story for a while now.  I’m not sure what I can say that would be of benefit to anyone.  However, I’m sure putting it out there would be therapeutic for me at least.  So, I am going to attempt it.  Because my writing style is such that I just write off the top of my head without any notes I’m not positive how it will come across.  It may be a jumbled mess.  We shall see.

As I have looked back over my life in the last few months my thoughts about when the Fibro actually “woke up” in me has changed somewhat.  I’m not really sure that I didn’t have symptoms as a child/teenager.  I have been reading a lot about Fibro’s connection to rheumatic diseases.  I had rheumatic fever as a child.  I am still researching that and am not satisfied with any definite answers about it yet.  Also as a teenager I suffered with intense headaches – similar to what I have dealt with for all of my adult life.  So, who knows if that was connected as well.

What I DO know is that after I gave birth to Michael I was never the same again.  I could also say that is where my depression story begins as well.  But I intend to write about that another day.  Fibro “awakens” in a carrier as a result of a tragic trauma to the body.  And, honestly, what is more traumatic to a woman’s body than being pregnant and giving birth?  I don’t mean that in a negatively traumatic way for us as mothers because it is a joy to bear a child.  I truly enjoyed being pregnant.  But when you think about all the changes that go on in your body during that time there is really no other medical word for it than traumatic.

Anyway, as time went on I began noticing changes in my abilities to keep up without the fatigue.  Six months after having Michael I got pregnant with Lauren.  My body barely had a chance to recover until it began the whole process over again.  It’s really hard here not to link my depression story with my fibro story because the two go hand in hand.  They are probably more linked than even I have researched yet.  But I will research it.

When Michael was 3 and Lauren was 2 we moved to another part of the state (Florida).  I noticed over those 2-3 years that my headaches were getting worse.  So when we settled into our new home and our new life I found a doctor and began a series of tests.  As you know, there is no test to specifically diagnose Fibromyalgia.  They run you through the test mill to eliminate everything else.  When nothing else shows up then they say you have Fibro.  I was diagnosed by a wonderful Neurologist finally in 1998.  What followed after that involved many visits to the ER for shots for the pain, many medication adjustments to find the right dosages and many more tests and doctor’s visits.  I pretty much remember feeling like a lab rat.  All of this was going on while I was experiencing overwhelming fatigue, extraordinary pain and continual medication side effects.  I did try some alternative therapies to help – acupuncture, massage and oxygen therapy.  If you have Fibro then I am probably writing your Fibro story as well.

It wasn’t until we moved here to Nashville and I found my current pain management doctor – who I’m convinced is the best in Nashville – in 2001 that I really felt like something effective was being done.  I settled into a routine that lasted about a year until I found myself bedridden.  Basically I was miserable and in bed for a little more then a year.  During this time my husband started a new job that required him to travel AND we began homeschooling.  Can you say overload?  I managed to make it out of the house only for doctor’s appointments.  I pretty much did everything else from bed.  I had a terrific support system.  Our neighbors also homeschooled and allowed our children to bring their school work down there some days or they would go spend the afternoons with them to play.  They were a wonderful means of support and friendship during that time.  I’m not sure I could have just made it through the day without them.

At this point in time a clinical nutritionist/chiropractor in our Sunday School class told us about his services.  I was once again run through a battery of tests to test various mineral/vitamin levels in my body.  I was started on a boatload of vitamins.  Within two hours of taking my first dose I was feeling alive again.  In the first couple of months I dropped 20 pounds just from being up and moving every day.  I made it back to church.  I was once again a part of my family’s life.  I had various flare ups over the years since that time.  I have decreased the vitamins to a smaller amount now.  Life is more manageable.

As many of you know the last year has been nightmarishly stressful for our family – for so many reasons – some of which you know and many which you don’t know.  About the time that I was sure my dad was gonna be ok after his cancer fight my body pretty much shut down.  I’m convinced that it needed time to react to the stress.  Somehow God worked it so that the Fibro stayed at bay until I was sure my dad was out of the woods.  Until 2 weeks ago I was in a 5 month long flare up.  I have had some procedures in the last month that seems to be helping the headaches, which have continued to be a problem since I was about 15.

I am hopeful that things will turn around once again.  I’m not sure how long it will last because that is the nature of the beast.  However, there are better days ahead.  I’m sure of it.  I’ve battled this condition for 17 years at least – maybe longer.  There is no cure.  There is only a managing system for the symptoms.  With my excellent medical team I am confident that it will be manageable.

One thing I have learned in my research is that the condition is hereditary.  I watch my children closely for signs of it in them.  I pray that the hereditary line stopped with me.  It would break my heart to know that I have passed this horrible gene on to either of them and eventually to their children.  I pray regularly for God’s protection on them so they do not battle the same tragic battle that I have had to fight.


8 thoughts on “My Fibro Story

  1. Thanks for sharing your story! I have been debating doing the same on my blog. I was wondering what vitamins you took that made such a difference. I know what helped you may not help the next person because that’s just how it goes, but was just curious. I’m glad you were able to get away for a wonderful vacation!! Hope you are feeling well today 😉

    • I’m not sure there is anyway I could remember all of the things I was on. THere were approximately 30 vitamins/minerals that I took in addition to my regular meds each day – sometimes several times a day. I do still take 2000 iu of Vitamin D and a Calcium-Magnesium twice a day. Everything else I stopped. I really would like to get tested again and see where my numbers stand now and what my new dosages would be. But I’m not interested in taking so many pills anymore. They helped then. But after a few years I decided to stop most of them and noticed that once again I felt even better. I have just restarted the D and Cal-Mag in the last 4 months after doing a lot of research.

      • Thanks~I am taking vitamin D and magnesium too. I am also taking flax oil and 5-htp which naturally raises seratonin levels. I read about this somewhere that it may help with fibro. I haven’t been doing it long enough to tell yet though:)

  2. Thanks for putting your journey to words. I have had drs ask me my trauma that caused this. I have not had anything “major” happen to me…wait I gave birth to four children. Two within 13 months of each other. The other two were eventful births. The guilt that I have felt over the thought of that. Your story helps me realize that it may not be an uncommon thing. The more we talk about our experiences the more we help one another find answers.

  3. Wow, I am so happy that you shared your story! It also makes me think I have nothing to complain about right now with my 2 & 3 year old! I couldn’t imagine being a Mom to them right now and dealing with the things you did! Wake up call! Thanks Pam. You are a strong amazing woman and I am so glad we connected online.

    I have heard that the melaleuca vitamins are AMAZING for people with Fibro. I know some people who can set you up with an account if you are interested in getting the vitamins.

  4. Thank you for sharing this,I was in a car accident in Feb/10 and I’m still undiagnosed, Post Concussive Sydnrome, muscle damage….there are so many things we are working to rule out. Recently a friend with Fibro who reads my blog mentioned it to me and I’ll be interested to see if this is my end diagnosis. Thank you.

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