Fibromyalgia: “What exactly IS wrong with you?”

Over the years I have had many people ask me, “What exactly IS wrong with you?”  My family all love that question.  “How much7-16-10 Yew tree near Ormiston 9 time do you have?” they joke.

My rheumatologist tells me I have fibromyalgia.  Some people, mostly well-meaning people, tell me fibromyalgia is not a real disease.  Well, something has been wrong with my health on and off for over thirty years.  The same set of symptoms have waxed and waned throughout this time.  My current family doctor calls these ‘on’ times flares.  I’ve been in a flare now for two years.

I think it’s sad that most fibromyalgia sufferers have trouble speaking up for themselves. When you feel so sick so much of the time it’s hard to clearly verbalise what is going on in your body.  Some of the best advice I ever received from a doctor was, “You have to advocate for yourself.”  It’s true.  I don’t need a psychiatrist, and I am not making up my symptoms nor am I looking for attention.

Frankly, I don’t care what they call it.  Over the years I have been told I have Chronic Fatigue Syndrome, fibromyalgia, colitis, IBS, and allergies.  I’ve been tested for Celiac multiple times, all with negative results. When a flare would end I was told I must not have really had the diagnosed disease, until the next flare which would bring a new label.

Right now no one definitively knows what causes fibromyalgia.  Hopefully in the future research will discover that it is caused by SOMETHING specific:  a vitamin or mineral deficiency, microwaves, a hormone imbalance, a parasite, global warming, Tupperware, vaccinations, dental fillings, barometric pressure changes, or space aliens – SOMETHING. I don’t care if they decide to call it bibbity bobbity boo, snicklefritz, Jabberwocky, or Persimmon’s disease.   My symptoms are real and something is causing them.

Learning to advocate for myself has required a leap of faith on my part. When you have minimal energy you can’t afford to chase down everything which may possibly help you. I have been greatly encouraged this past year by going gluten-free, taking magnesium supplements, and having allergy and food sensitivity testing done.  I have learned that specific foods, preservatives, and additives cause me to have a violent physical reaction and I have learned to avoid things which are obviously poisonous to my body. Right now I’m also working on shifting to a more alkaline diet.

I have also become a label-reader to make sure I am avoiding the foods and additives that I know cause me to throw up, have pounding headaches, or suffer from severe gas, bloating and the runs.  I lived almost thirty years of my life with serious digestive issues and accompanying nutritional deficiencies. Having relief from that downward spiral has been liberating.

My muscles feel achy, weak, and sore when the weather is cloudy or when it rains or snows.  Restful sleep, a regular schedule, and proper nutrition help me to be more productive, even in times of flares. I also have moderate to severe osteoarthritis and am waiting for a hip replacement.  Sometimes it’s hard to separate the fibromyalgia symptoms from the arthritis symptoms. Maybe there is an organic connection, maybe not.

Friends and even acquaintances share ‘causes, cures and remedies’ with me.  I really don’t mind; they might be on to something.  But honestly, there is no way I can even begin to afford buying and trying everything suggested to me.  If I’m feeling half decent I’ll do some research and make a decision about trying something new based on that. If I’m feeling very ill with a flare, I’ll say thank you and wait to investigate until a time when I am stronger.

Next time:  a little more on my background and the beginning of the symptoms.

Friday’s Fave Five #6

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Welcome to Friday’s Fave Five, hosted by Susanne at Living to Tell the Story, in which we can share five of our favorite things from the last week, a wonderful exercise in looking for and appreciating the good things God blesses us with. Click on the button to learn more, then go to Susanne’s to read others’ faves and link up your own.

1. Is it spring yet?  Because of my limited mobility, this year I find myself REALLY longing for winter to be over.  The ice is enemy to my ability to get around on my own.  But as in all things, we can turn our thoughts, this time to the blessings that accompany wintry weather.  The past week as been full of sunshine!  I am very grateful for the longer days and that it has been warming up to minus eight to ten during the day.  My kitchen is particularly sunny in the afternoon because it faces south.  This is a view from our kitchen garden doors:Sunshine on the snow

Plus the trees and bushes look pretty when the sun shines on the ice and snow!

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2. Mondays are family night.  Our daughters and their roommate come over and we share a meal and talk or watch a favorite BBC program.  Sometimes I make the meal and sometimes they pick up a roasted chicken and a salad from the store on the way home from work. It’s a real blessing to have them living nearby and for the fellowship we enjoy together.

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3. Hangout with our kids in China. Our other two children live in China.  I am extremely grateful for Skype, Hangouts, and other media that allows us to have a weekly face to face chat.  It’s great to be able to talk with our youngest daughter then have our son, daughter-in-law and two grandchildren pop into her room and visit with us too.  One of the greatest sacrifice missionaries of old had to face was the possibility of never seeing family again once they left for the field.  We are so blessed to be able to communicate every day if we wish.

Christmas chat from China 1

4. Memories of my mom. As I was cleaning out 2013 files in order to prepare for tax time, I came across the results of old allergy testing I had when I was ten.  I had uncovered it when going through files I had collected from my parents’ home when we sold their house.  Because I had food sensitivity testing last summer I stuck the ancient file in with my current one.  In various places on those test results I saw notations in my mother’s handwriting, and loving memories of my mom flooded my heart and mind.  I was blessed beyond measure to have a godly, loving mother and I look forward to seeing her again in heaven one day.

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5. Taxes The thing I hate most to do every year is taxes.  Because we are dual citizens we have to file in two countries, and because my husband’s work does not fall into one simple category, we have to keep track of a lot of things for tax time.  Normally it is a very stressful time for me.  However this year I got an early start, did not feel at all stressed by doing it, and am actually almost all done with my part.  This is a big, big blessing to me!