I was holding out for summer in the hopes I'd start feeling better, it seems in fact I'm feeling worse. It's been a week since our meeting and I have been trying to write this post since. I expected a flare, all the conditions were right for it and completely unavoidable, but I was hoping it wouldn't be quite so brutal. Anyone else think it's kind of messed up that just thinking that makes me laugh a little, not a loving chuckle, more like a hysterical hiccup.
Anyway the point of that is; sorry for the late minutes.... and thanks to everyone who made it out on Tuesday despite our little location hiccup. Your support and dedication helps so many including myself, and I am so grateful to everyone in this little community.
We kept it a casual so I don't have a very formal minute review this month. However, something we touched on in our discussions was distinction between Fibromyalgia and something else. I know in the past I have written in length about other conditions that can mimic or be misdiagnosed as Fibromyalgia, in reality we are all probably misdiagnosed and over-categorized and will be until the science catches up. Part of the reason I feel compelled to define things a little more specifically for each individual is that it provides more information for subgroups, biomarkers, and definitions for what is and isn't considered Fibromyalgia. Each individual diagnosis may not do us much good in the way we treat ultimately, but it can help us obtain medical coverage and research. Medical codes are what determine which medical assistance will be covered by insurance, for that reason alone it's is practical. Also because just a slight change in symptoms could mean a different diagnosis and a more effective treatment protocol. Unfortunately making those distinctions is more about the research you do than your doctors and we know most doctors aren't even doing the basic tender point checks anymore.
Sometimes we know when our diagnosis fits and sometimes it just doesn't feel right or complete. Trust your gut, if you feel there is more investigate. Ask questions of those around you, what they experience. You might be able to learn something and the more learning we do as a whole the better of we will be as a community.
When I start feeling better I think I may try to compile a check-list of sorts to help define a few of those things. I've got a few ideas about a few different things, bear with me and we'll get to them. in the meantime if you have questions please ask, maybe we can figure it out together?
I want to understand Fibromyalgia so I can fight it, but in order to understand Fibromyalgia you have to understand the things that looks like it too.
Please check out the pdf I compiled on things that can mimic Fibromyalgia in the resources page of our website.
Keep coming out! We will be having a guest speaker next month: Marnie Schroeder, talking to us about PTSD and psychological aspects of disease.