I work in the medical field and I always hear people talking about how patients with fibromyalgia are just seeking pain medication and how they hate to get a patient with that disease. It really makes me feel sad and isolated. People that don’t live with pain every day can’t understand people that do. I know that I’m not ever going to have a day without pain, but I do want to be able to make it through my day without crying in pain. And because I know how people with chronic pain are treated, I never go to the hospital, even when it’s the worst pain of my life because I know how I will be treated. And they also put you on a frequent flyer list.

It’s a culmination of factors. The only reason the surgeons I work with will even acknowledge fibro is because they know me personally and have gained first hand experience of what it looks likes. But some of the factors include:
1) Fibro wasn’t even differentiated from a rheumatic disease until within the last decade or two.
2) There is no quantitative diagnostic test for fibro (though, one of my research projects from a little over a year ago showed that out of 18 fibro patients, 17 of them had DOUBLE the nerve shunts, which explained their heightened sensitivity, particularly to pain among other sensations... and 18 participants normally wouldn’t make for a statistically significant study, but as all but one concluded with the same results, it became a ground-breaking study, particularly for the potential diagnosis of fibro).
3) It’s invisible. This particularly sucks since numerous studies have shown that the pain experienced by an individual with fibro his rated has the most severe pain any individual could ever be in, which included labor pain, cancer pain, etc. On average, in someone who has a moderate case of fibro, their pain was worse. Yet somehow we’re invisible?
4) We don’t have a treatment. It would be one thing if there was a specific chemical compound that was known to combat fibro, but since our symptoms are housed in one category, it’s nearly impossible to treat with one magic bullet. If there’s no treatment, it makes it that much harder to acknowledge as real (for some lazy individuals).
5) The most annoying reason of all: it’s not them. They don’t have to deal with it. So they don’t think to put themselves in the shoes of someone who does have to deal with it. Part of this, from my background in Neuroscience, appears to majorly be due to the fact that it’s so great that it’s hard for them to conceptualize. I think that’s understandable to a certain extent. When something horrible happens to someone, have you ever found yourself either thinking or saying out loud “I can’t imagine.” I think it’s the same thing here. Now, there’s a large gap after that because while I can say that I can’t imagine, I still won’t tell them that what they’re experiencing isn’t a real thing, though the inability to conceptualize fibro as a condition appears to be the jumping off point.

None of these reasons are okay, but if there’s one thing that my schooling and career has taught me it’s that even when it doesn’t make sense, try to get the most robust understanding of where they are coming from because as this is exhibit A, how many times have you been in a position where others aren’t able to understand where you’re coming from?

They have not had any diagnostic tests to determine if someone has fibro other than the 18 tender pointa. So doctors would rule out all the different illnesses and when nothing else was diagnosed they would tell us it is fibro. Now i have seen that there is a bloodtest to diagnose fibro but it is very expensive. So without any actual tests to be done, so that they can prove someone has fibro it made doctors and alot of people think it is all in our heads. I am glad they are finally starting to believe us and doing more research to hopefully help us one day soon. I hope one day there will be a test to measure our pain. That would show everyone how much pain we actually live with each day. Wouldn"t they be shocked? Lol.

Yeah u would think so. I really hate be treated like a crazy person from yes, Doctors, as well as my family and friends. It hurts and i have noticed that i try and not to talk to people about my Fibromyalgia because it's frustrating to try to get other to understand me. It really is a silent disorder. We look ok, so than it must be in our heads and we should just get over it. Oh how i wish it was that easy, don't we all!!!
I find talking with others with fibromyalgia helps so much more then any therapist i could go to, so thank you for being here for me.
God bless you and gentle hugs🙏👍😁

oh how true they put a flag when they type in your name it comes up ! so so very true !