Friday, June 29, 2012

A United Front

Last year I had to get a root canal. It was a maiden voyage and I was extremely paranoid about the rumors of pain it would cause. My 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 tipped back in the doctors chair and told me she had Fibromyalgia as well. I asked her how she managed it. She pompously informed me 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.

There are as many variables with this illness as there are theories on what causes it. Nutritional deficiencies, neurological damage, 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. Some folks have this symptom, some have that symptom. Some have found ways to get it managed or even heal while others have not. In some people it's so severe they can barely walk and live on narcotics while others go to step class at the gym and work two jobs. And then there are so many other conditions many Fibromyalgia patients suffer from as well, each encompassing their own complexities of cross-over symptoms. 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 hi-tech image slicer 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!

Whatever its cause the bottom line is 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 one protocol works for every patient. This is the crux of our problem. I wonder if we the patients accepted Fibromyalgia as a cluster of varying illnesses sharing similar symptoms and showed a bit of compassion and understanding to our fellow patients, maybe that acceptance and support would go a long way in 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 doctors. The way we relate to each other has a huge impact as well. I see a fair amount of judgment in our fraternity towards our 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 that 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 one size fits all disease.

The reality of Fibromyalgia is 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 and one voice if we ever expect validation. 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. Can we stand together, accept that Fibromyalgia is a diverse illness and support our fellow-sufferers with compassion, acceptance and understanding, not harsh judgment or dogmatic close-mindedness? Is it possible to recognize my Fibromyalgia is not the same as your Fibromyalgia which is not the same as their Fibromyalgia, but we all have Fibromyalgia? Would it bring awareness to a whole new level by accepting each other first, and then seeking acceptance from the world at large? I think it would.

Thanks for joining,

This blog was originally published on 9/14/10. I have met many people since writing this, and learned many things about Fibro, and am sad to say the mystery and judgment surrounding this illness still stands. We are making steps, my friends, but they are hard-fought and very slow.


  1. I can relate to this posting. I went to join a weight loss center recently and was explaining to the "counselor" that my activity was limited due to fibromyalgia. She says "Oh, I have fibromyalgia too." She said it in a way that told me she didn't think it was a big deal. I wanted to ask her "do you cry because you are tired of taking apin medication but it is the only thing that enables me to be able to work?" or "does your husband have to do your grocery shopping because pushing the full cart puts you into total flare with spasms?" Have a feeling the answer would have been no.

  2. Straight up. I went to get my hair cut the other day and the hair dresser also has Fibro. She told me "you just need to do what you need to do and ignore it." Um no. Maybe that works for her, but that is not my cup of tea at all. Thanks for being real with your readers, Leah. You are a definite encouragement in my Fibro journey. I would be lost had God not led me to this blog a couple of years ago. Holy cow, has it really been that long?!

  3. Every time I say something to my MIL about my fibro, she says,"I have that too." Um, no. You don't. You just like to one up everyone.

    I spent the last week finding myself a new car and haggling the deal and when we finally brought it home yesterday, my own HUSBAND said to me "what did you notice about this week?" I said, "What?" He said, "You were busy so you didn't notice your fibro." Seriously? Are you NEW here???

    How can the people closest to us be so thick headed???? And that doesn't begin to cover the people we don't know who judge us before they even ask about our symptoms or think they have it too?.

    Sometimes, it's very sad. Thanks for being there with so much understanding.

  4. If I had money for every person who has told me that they have Fibromyalgia and I know that they do not I would be rich. I know that there are degrees of this illness but there are people who just want the attention and have a ache or pain and run to the doctor and come home with Fibro. When a lady that I worked with over 25 years ago and I talked on line and we were discusing that I have Fibromyalgia, she say, oh, I have that too and when I questioned her about her treatment, she said oh I just deal with it. My first thought was girl you ain't got Fibro..... I know that there are many who use the "Fibro" word for every little pain and there are those who suffer everyday, all day, all night. It gives people who are truly sick and suffering a bad reputation and makes people believe that if you just go to water aerobics that you will be wonderful. Well I tried water aerboics and I was not fine. First you have to be able to get yourself to the YMCA to do it. Anyone who truly suffers as I do knows what I would like to do to these people.....LOL I remember a while after I was diagnosed with Fibro one of my friends who had been in a wreck while intoxicated and had pins in her leg and feet and I am sure had pain, no doubt and was extemely overweight decided to ask her doctor if he thought she had Fibro.... He said well you could have, so she diagnosed her self. I know that there are people with similar pain and so many times because there is nothing to test wise to indicate Fibro they assume they have it. I have people who say I think that I have it. Believe me if you have it you will know it. I know that there are people who respond to meds and who work but if affects people differently and those with constant pain, who can barely make it thru the grocery store, to the doctor, who are unable to get out of bed for days, who never leave the house unless it is a total necessity know how I suffer. I live alone and I have to do for myself, no family help, except for my daughter who also suffers from Fibro and has 4 bad disks in her neck that she needs surgery for, two which needs to be fused but at 41 does not want to live with her neck fused and has no insurance and she will not file for disability. We are there for each other even when in pain. Everyone who says that they have Fibromyalgia does not. I think that the evidence speaks for itself. If you feel like going to the pool hall 3 nights a week with your hubby and clean 4 or 5 houses while drawing disabiltiy makes me wonder how you do it. You certainly do no have my pain. The last 6 months have been extremely bad with no relief. At times I feel like giving up but I know I have to keep fitting for myself and my daughter. Just because we go out to do some necessity does not mean we forgot about the pain or felt better it just means that there are things that we have to do as long as we can force ourself to stand up. Were it not for my meds, Pain Pills, muscle relaxers, etc. I would not function and yes I smile and lie thru the pain when I meet someone while I am out doing those chores and then I come home and cry..... Thanks for letting me rant about those people like we all know and come in contact with.

  5. Fibro is something that I am learning to live with and with that, I am learning that not all of us do have the same issues. Right now its being really tired that gets me. I went strong for days, and although I am not really hurting anymore than normal I have the issue of being so tired today, having to take the whole day to rest. I just wished everyone could read your blog about us not all being the same.....thanks.