Sunday, September 12, 2010

How Can I Explain Fibromyalgia?

I attended the birthday party of a good friend last night. Just an intimate and impromptu get together at her house, I found myself given the opportunity for the first time since I have taken up the proverbial Fibromyalgia cross to promote my condition and raise awareness, the new charge of my life. But I was at a loss as to how to explain it without launching into 20 minutes of background information to answer each question. It is a messy and complicated experience with so many variables between every patient, each with an individual and woeful tale to tell. It became abundantly clear as I was losing my momentum and focus that I must devise a "30-Second Elevator Ride" synopsis that clearly defines, explains and promotes the cause. So today amidst the booming NY Giants (GO GIANTS!) game pulsing from my big-screen, I set out to research and condense the best, most effective, clear & concise synopsis of Fibromyalgia that will get the word out and leave each person I encounter with a basic and clear understanding of what Fibromyalgia is. Not Fibromyalgia as Lyrica or Cymbalta advertise it, not to diss the attention their advertising brings, but really WHAT IS FIBROMYALGIA?

"Fibromyalgia affects between 2-6 million Americans. It is a neurological condition stemming from the central nervous system that produces a sensation of severe body pain, stiffness, cognitive impairment, fatigue & insomnia. Fibromyalgia patients frequently suffer from other symptoms and complex medical conditions as well. It is believed to be caused by a cluster of factors working together; a genetic mutation susceptibility, infections and a specific trauma or injury. There is no cure and prescription treatments offer limited relief with high-incidents of side-effects. It is a lifelong, non-degenerative condition that can be managed using a holistic, total body approach to wellness but the quality of life of a Fibromyalgia patient is forever altered as basic life functioning diminishes."*

Well there you have it folks! This is Fibromyalgia as Leah views it. I tried to keep it scientifically loose, comprehensible to the average person and broad enough to encompass the variety and flux of symptoms and severity we all suffer from. Now I just have to commit this to memory (fibro fog!) and pull it out any chance I get. If I keep the focus off my specific experience and make it more about a general condition many suffer from I believe that will go a long way to promoting the "realness" of this awesome predicament we find ourselves in.

Thanks for joining,
Leah

*Some information in this post was provided by The National Fibromyalgia Research Association and Mayo Clinic.

12 comments:

  1. I love this. It's SO hard to explain without sounding like a whackjob (at worst) or a hypochondriac (at best) sometimes. Those who REALLY know me, know that I'm neither (although, occasionally, they might say the whackjob label fits nicely ;-) But for more casual acquantainces, this description would work well. Nice job! Hope things are managing for you okay. I'm in the middle of a flare, but it seems we're nearing the back end of it, as I've been taking it SUPER easy!

    Be well!

    Michelle

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  2. I too have felt the need to have a proper explanation for my Fibro. I want something even shorter than you wrote however. Friends, Family and others kindly ask, but then I see their eyes begin to glaze over when I get into the specifics! My "Cousin, The Doctor" is the worst. I know he does not subscribe to ANY Fibro theory! It truly is a rock & hard-place disease. I pray every day no one will ask me,
    "how do you feel?" or "what is it again that you have?". Thanks for your blog and forum.

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  3. There is a great deal of data suggesting that fibromyalgia is a vitamin D deficiency syndrome, see all the patient reports at http://www.revolutionhealth.com/drugs-treatments/rating/vitamin-d-for-fibromyalgia-syndrome-fms
    and you can get a great supply of vitamin D from www.vitaminD3world.com

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  4. Thanks for the input guys! Yes I agree it could be condensed, at least to something one could remember and recite easily! But it is just so darn complex. As for the vitamin D, there are SO many "theories" out there but I went with what is most commonly accepted RIGHT NOW until they really figure out what's going on. I also personally believe there are many different "diseases" clustered under this diagnosis with very distinct causes but similar symptoms. We truly are the generation that will watch this mystery unravel!

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  5. Thank you Leah, You were able to say what I have been trying to explain for years. These past few days have been really bad for me - lots of flare ups, cant concentrate on a damn thing. Really want to just go home and sleep! I can feel the depression creeping in again. (((sigh))).

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  6. I love the Explanation Leah, it works for me if only I could remember it. ( maybe I should put it on some an index cards to carry around and pass out ) Which this gives me an idea. If we all printed something like this up on a cheap package of index cards and post them on bulletin boards where ever we go, it could be another way to get the word out. @ MBarnes, the Vitamin D deficiency is just another one of the complications of Fibromyalgia, It is not the cause.

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  7. Perfectly Stated - I love it.....

    And so agree....it is a complication of many things - and not all of us have the same probs - My Vitamin D does tend to go low - and I have to monitor it, however my doctors have found that most people in this region have Low Vit D...and they don't have Fibro....Hormones, Low Thyroid, Low Magnesium, Low DHEA - BASICALLY...for many years, I have been LOW in something....after bringing most of my levels to normal and even above normal - eat perfectly, exercise, sleep well -
    I still have Fibro - Flares - Fatigue and still hurt almost everyday. I realized the other day, it may be something I have for the rest of my life...which is ok - its how I accept it, that is the most important thing ~

    Love your blog - I started one as well - However, my insurance company began "monitoring it" so have not been posting for quite some time - about ready to start a new one, hoping they will be unable to find that one...

    Really miss verbalizing - it is such a great relief - Have any of you found that to be true as well - not complaining..argh - I hate to complain - but just verbalizing makes me realize how great my life really is....so I don't focus on the bad....

    Take Care ~ And again Thanks for your "explanation"

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  8. Thanks for the description Leah! Very helpful! I have been searching for clues and understanding as to what has been going on with my wife. Ever since she had children she has said how bad her Fibro is making her feel. Sleeps a ton, hurts all the time, has terrible memory issues and is very irritable. I still struggle to understand what she is going through as it seems like an invisible disease! I never thought I would be a virtual full time caregiver for someone who is only 40! I wonder how many other husbands and family members feel the same? Thanks & Best of luck to you!

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  9. Anonymous- You are a good man to stand with her through this. It is the hardest thing we have ever gone through (well the strokes give it a good challenge but you know...). Our life has not at all turned out like we expected (who's does?) but we are determined to still live the life we have. There were years, when I was still working, when I would have to put a smile on my face all day and would come home and fall apart on my husband. I am blessed he is still with me today...this has NOT been easy on him. God bless you for sticking with her. So many bail and that is just horrible. Stay strong! ;)

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  10. Leslie Martindale in OhioSeptember 24, 2010 at 4:02 AM

    At 4AM I woke up with pain and insomnia, so after some stretching got on FB to see if any friends were there.
    Fortunately someone I haven't seen in years had shared this...so glad he did! I have had this condition for years as did an older sister who eventually passed away because she took to her bed from the pain and all the side effects of the meds. After watching her die I decided it was time to throw away the meds and really concentrate on living life to its fullest, staying active, and telling myself each day that the pain will subside and the next day will be better. I have found that going into each day with a positive upbeat attitude and a sense of humor about my own forgetfulness or lack of concentration helps me greatly to deal with the pain and exhaustion when it is overwhelming. Leah I am grateful that you and others take time to contribute some positive feedback to this terrible condition in hopes of helping others like us and those around us who don't understand. Thank-you!

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  11. Thank you so much for having this Post. It is very tiring, especially during prolonged periods of FibroFog, to explain Fibromyalgia. I will jsut have to put it on my phone, on the back of a "business" cared, and hopefully be able to commit it to memory (eventually).

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  12. I have many physical problems Fibro is just one when people ask me about it I just remind them about the princess and the pea fairy tale and then say there are many other things added in.

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