Myths, Assumptions, Realities, and Confusion Surrounding Fibro
Let me start with myths and assumptions. People with Fibromyalgia are not lazy. They are not hypochondriacs. They are not crazy (at least not because they are aware of their illness!). Fibromyalgia is not something you can just ignore or “power through,” and it absolutely does not mean you are weak. Trust me, those of us who have it have gone through many days of questioning ourselves about these exact things. It is only when you recognize that NONE of these things are true about you, that you can begin to tackle the disease, and all that comes with it. AND, it is only when you realize that none of these things are realities about someone you know or love who has Fibro, that you can begin to understand them, help them, relate to them, and be informed.
Next, I would like to address the realities of Fibro. It is still very misunderstood, even in the medical community. Because it is a pain-centric illness, it is hard for many people (doctors included) to see as “real”. There are a set of sister illnesses that come with Fibro (and assist in the diagnosis of it) but Fibromyalgia itself cannot be seen, it does not manifest in visually tangible ways. Also, because it is more often a “womens’ illness”, like many other things that affect women in the medical community, it is not taken as seriously.
My own doctor, in fact, does not take Fibromyalgia seriously. He has told me as much. However, I don’t have insurance, he treats me with compassion, and because of the medications I take, changing doctors at this point would be a nightmare. There are so many ailments that accompany Fibro or are (in combanation) seen as signs of the disease, that I cannot name them all. What I will name are the ones that I suffer from. Chronic, unrelenting pelvic pain. Endometriosis (an overgrowth of the uterine lining that can grow anywhere in the body–including the brain, that causes a LOT of pain). Intersticial Cystitis (an inflammation of the bladder and urinary tract which makes you feel like you have a severe bladder infection, but shows no signs). Fibroid tumors in my uterus. Irritable Bowel Syndrome. Depression. And, most recently, chronic and debilitating migraines.
Most doctors, and people who hear these symptoms, see treating the symptoms as a solution. However, the thing about Fibro is that pain and ailments migrate. Once you have “remedied” one problem, another arises. Also, I (and others with the illness) can feel fine one minute, and be beside myself in pain five minutes later. So far, the doctors I’ve seen (and I’ve seen A LOT!) want to do numerous surgeries on me, and/or they treat me like an addict seeking pain medication because they can’t SEE the problem. I am not okay with having surgeries that inject steroids into my spine, removal of my female organs, or going home in pain, and trying to “forget” about it, and NOT OKAY with being treated like a criminal because I admit that I have pain!
I am slowly finding my way through the web of confusion surrounding this illness, and I want to advocate understanding for myself and other sufferers. There is no “cure” for Fibromyalgia, but there is a cure to ignorance and insensitivity:)
Chronic Pain Rights & Responsibilities 
As a nurse who has recently graduated from school we are taught to take a patients pain as “truth” no matter what your personal thoughts or beliefs are.
At the same time I have witnessed the same instructors who teach us this, turn around to us as students when a patient is being overly difficult or slightly over bearing and say “don’t worry about her she just wants her Percocet , she does this all day long, It will do her good to wait a while”.
There are definitely those who “drug seek”. The bottom line is that it is not my decision to make nor is it anyone else’s. If a patient says they are in pain THEY ARE IN PAIN. Even though I could not give a prescription for pain medication because I am not a doctor there are MANY things I am able to do to make a patient more comfortable. EG Heat, Ice, Television, Distraction, coffee, food, conversation, VALIDATION!
I have seen many nurses and especially doctors discount other peoples pain. This is not acceptable. Remember this next time you decide how much pain someone else is in because it very well could be you someday.
Thank you! SO TRUE! And, validation means a lot! There are definitely those who drug seek, but although I would never say this in the ER, I could get better, cheaper, quicker drugs on the streets, if that’s what I wanted!:) Also, I find that the worse I feel, the more I try my hardest to be easygoing and patient. So, I know it’s not my “pain in the butt” behavior!;)
I enjoyed reading your article about the realities surrounding fibromyalgia. It is difficult discussing fibro with people. I have been looked at like I was exaggerating, crazy, over sensitive, etc. Actually, I was down-playing how it really feels because I felt like they would really think I was crazy if I told them I felt like I was draggged on top of nails sometimes, or that someone just stepped on my entire leg or back who wore a size 12 shoe; or how about feeling like you never slept after going to bed at night like everyone else. There is more, but I am sure that you get the picture. What I have learned through it all is not to be a whimp; and how to be more sensitive to other disabilities, and those who are physically and mentally challenged. It has taught me how to look outside of myself, and into the truth about all things.
The Silence of Pain, no pun intended, but “I feel your pain!” If you didn’t yet read it, you should check out my first entry, “I’m Coming Out of The Fibromyalgia Closet,” it addresses many of the issues you’ve mentioned. I am just beginning to accept the illness, myself. No one wants to feel “weak” or “helpless!” Keep writing, keep fighting, and keep your chin up!:)
Hi, I am trying to get more LIKES on my Facebook Page, The Painful Reality of Fibromyalgia, could you please be so kind to LIKE my page? It is on my blog and it says Follow Me On Facebook. Thank you so much.
Barbara
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