Saturday, January 22, 2011

A Unified Front

There are so many variables with Fibromyalgia. Some people have this symptom, some have that symptom. Some have found ways to heal while others have not (surely not for lack of trying!). Some are so severe they can barely walk and live on narcotics while others lift weights at the gym daily and work 2 jobs. I am coming to realize the pure range of this illness is one of the main reasons we are so misunderstood! Not only can modern medicine not just poke your blood out of your vein with a needle or scan your brain with some radiation blaster to tell you what is wrong with you, but we all experience Fibromyalgia with different symptoms and varying severity and it has compounded a mass confusion. We the patients cannot even understand or agree on what it is!

Last year I had to get a root canal. I was extremely paranoid about the hurt involved, never having had one before and knowing how overly sensitive I am to any sensation of pain. The endodontist was amazing and numbed me up to the point that I felt NOTHING. God bless him! His assistant, on the other hand, was something else. When I told her why I was so worried about the pain, because I have Fibromyalgia, she looked her snooty little nose down at me lying in the examining chair and told me she had Fibromyalgia as well. I asked her how she managed it. She pompously informed me that she worked out every day and just powered through the pain. My thought, You must not have the same kind of Fibromyalgia I have! Luckily at this point my mouth was hinged open in prep for the root canal so all I could do was glare at her.

But I have noticed this attitude over and over again. There are so many different theories out there. Root causes, nutritional deficiencies, neurological, cranial injury, depression, viruses, TMJ, sleep disorders, genetics, trauma, elevated neurotransmitter activity, central nervous system pain amplification, hormonal imbalance, depressed serotonin and/or growth hormone...oh the list goes on and on! And then there are so many other conditions most Fibromyalgia patients suffer from as well, each encompassing their own complexities of cross-over symptoms. But the bottom line is that the jury is still out, the clinical basis still in the research and development arena, and while there is a real push for awareness and treatment, no 1 protocol works for every patient. This is the crux of our problem!

I believe if we, the patient body, accepted that Fibromyalgia is indeed a cluster of varying illnesses sharing similar symptoms, and showed a bit more compassion and understanding to our fellow-fibrates, the acceptance and support would go a long way to showing the world at large what we are going through is indeed real. Let's be honest here, half of what makes this so hard to live with is the way we are treated, and not just by uncompassionate family members and friends or archaic MD's. The way we relate to each other has a huge impact as well! I see a fair amount of judgment in our fraternity towards its own members. Some have found the holy grail that works for them (or what they are trying to sell) and set out to convince the world that if every Fibromyalgia patient just took this supplement or did this exercise or got this treatment then poof! It would be gone. Some are genuine in wanting to share their success. But I know personally when I was in the depths of despair over my quickly disintegrating physical and mental capabilities, the last thing I had the patience to listen to was one more anecdotal tale about how if I would just buy some special vitamin or juice or potion I would be cured. Quite frankly, it only served to piss me off! I was one sick girl and vitamins alone were not going to provide a magical remedy to solve my myriad of problems. Like politics or religion, this is not a 1 size fits all disease!

The reality of Fibromyalgia is that the tremendous amount of variable symptoms and degrees of incapacitation are serving to sever us as a community, a community that MUST stand with solidarity, with one voice, if we ever expect validation. I even find myself (before I sat down and wrote my nifty little synopsis) focusing on my individual experience instead of a general overview of what the disease is and how it affects those afflicted. I believe I know what my particular Fibromyalgia was caused by and have figured out a way to manage it to the best of my ability. But that in no way means every Fibromyalgia patient has it for the same reason, can manage it the same way or will experience relief from the same treatment. The sooner we get on the same page, hell, even just start reading the same book, I believe our cause will come together under the umbrella of compassion and grace and truly further awareness for real.

I have just defined the platform for phase 1 of "The Fibromyalgia Crusade"! Let's stand together, accept that Fibromyalgia is a DIVERSE disease and support our fellow-sufferers with compassion, acceptance and understanding, not harsh judgment or dogmatic close-mindedness. Let's recognize that my Fibromyalgia is not the same as your Fibromyalgia which is not the same as their Fibromyalgia. But we all have Fibromyalgia! Let's bring awareness to a whole new level by accepting each other first, and then demanding acceptance from the world at large. God bless us all!

Thanks for joining,

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  1. Well said, Leah ! This is exactly why I don't share with people that I have Fibromyalgia or any other chronic illnesses I have been graced with. People forget Fibro is more than just a disease that causes physical pain --- there is a myriad of other symptoms that go along and quite frankly, I find much worse to deal with than the pain. It is sad that fellow fibrates do not unite, but I think they are like non fibrates in their attitudes. I have found that once I talk about my illness, I push people away or they tell me nothing is wrong with me. For the past three yrs I have had multi chemical sensitivities - part of Fibro as you probably know. I stopped having my hair colored by my sister hairdresser who continued to tell me it was all in my head. Three yrs later, she still doesn't believe me when I say I have trouble breathing around chemicals. The icing on the cake --- this past Christmas she gave me a scented candle ! She is a perfect example of the close mindedness of society and their ability and/or desire to show compassion towards another person. It makes this journey difficult, but to get through , no matter how I am treated or viewed, I just simply treat others as I would want to be treated.

  2. This dismissal from others in the world is what feeds the fire of depression for me. it would be alot easier for us to deal with if we were treated with the compassion and respect. Too many people like to call us "hypochondriacs" and "lazy"...this hurts !!!

  3. A doctor said something to me the other day that really hit home about Fibromyalgia and it's many causes. He said there are many roads that lead to Italy.......but once you get to Rome, you're going to have pizza.

    In other words, there are many causes and reasons someone develops the symptoms of Fibromyalgia............but once it all starts in the central nervous system, it ends up the same..........the pain, fatigue, sensitivities to light, sound, odors. We don't all have the same causes, but we end up with the same effect.......Fibromyalgia.

  4. Very well put Leah. The one thing that makes me crazy is when you tell people that you are on disability and they look at you and say "you don't look disabled so "why" are you on disability?? I tell them to step into my body for just a day and then tell me I'm not disabled!! I totally agree that EVERYONE has different symptoms but we all have Fibromyalgia! My Doctor is great, she is always saying that it is a true entity. She is an MD but treats several patients with it! She is always willing to listen to my new symptoms or that this medication isn't helping and we work together to mix the right cocktail of meds to make my life tolerable. It is every changing, just like the symptoms. But it is definitely REAL!

  5. Youre so right! Ive had the same exact thoughts so much over the past year.

  6. Thank you for sharing this.. There is no diffence in the way people act .. I experience the same, allthough I live in Denmark..