Tuesday, September 14, 2010

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,


  1. Thanks so much for posting this! I wrote about being someone who has lived with FMS symptoms for almost 30 yrs and yet, lives an active life only to be attacked by other FMS sufferers! I was even accused of lying about having FMS because I dance, hike, swim, etc., despite being in chronic pain.

    I hate it when other FMS suffers try to convince me I can't possibly have FMS because I don't take meds despite having the same symptoms as everyone else. My decision not to take meds is a PERSONAL choice and in no way a reflection on anyone else! MY condition is MY condition and has nothing to do with anyone else but ME.

    We as a community need to stop attacking each other and lose the "Woe is Me" mentality. Yes, it hurts! But constant whining DOES NOT make it easier to live with! Nor, does being jealous of others who suffer LESS than we do!

  2. Thank you so much for this post. I have just recently been diagnosed with fibro, though I have had symptoms for many years. I also have autoimmune arthritis and I find that easier to explain to people. I have some very supportive friends and they are doing their best to understand the fibro but they get confused when I say things like 'when I hear a sudden loud noise, my arms hurt' and 'sometimes I'm too tired to go to bed, because it's too far to walk.' Luckily for me they are caring and supportive even if I can't really explain the symptoms. It's been really hard to explain when I don't understand the causes myself.

    I used to go to an arthrits support group but I experienced more discrimination there than anywhere else. People were making judgments about the fact that I don't work full time and went on about the fact that they pushed themselves to work and study full time. I push myself to work 6 hours a week. I work on a mental health helpline, a job that I love and that I know makes a difference in people's lives. I hate that their comments made me feel that this was not good enough. I KNOW it is good enough. I am happy with what I achieve and I shouldn't let people who are supposed to be part of my support system take that away from me.