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.

4 thoughts on “Fibromyalgia: “What exactly IS wrong with you?”

  1. Thank you for sharing , I to suffer fibromyalgia and find unless you find somone else who has it the others don’t understand. I have been fighting doctors and unbelieving family members on this for years as well. I to have had many differnt diagnoses and still haveing tests done with no answers. My thoughts and prayers are with you ! God bless

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  2. I only knew that achy, weak, and sore muscles were part of fibromyalgia – I didn’t know it also affected digestion. Though I’ve had different medical issues, I’ve faced some of the same things: an unknown cause, questioning the diagnosis, having to advocate for oneself, etc.

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