ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Fibromyalgia research: where we hurt most
Friday 24 January 2014
Fibromyalgia Research: Where We Hurt Most
Yeah, I know - you looked at the headline and thought "everywhere" or "where don't we hurt! But I think you'll find this research interesting - I really do.
While researching for an article on foot pain, I came across a chart showing where people with fibromyalgia report pain most often. It was part of a study comparing this condition with lupus and rheumatoid arthritis (RA.) I'd never seen that kind of information before - it's usually just "widespread pain."
After asking a couple hundred people with fibromyalgia, here's what researchers learned about how many of us hurt in which areas:
Lupus and RA are serious autoimmune diseases that cause immense pain. This is an accepted fact by the medical community and the public at large. These are nasty, debilitating diseases.
Without taking anything away from those conditions or the people living with them, I have to point out a significant fact - their percentages are significantly lower than ours almost across the board. People with both diseases have a lot more hand pain than we do (lupus = 73%, RA = 81%,) and those with lupus have more foot pain (63%.) Other than that, we hurt more everywhere.
More than 90% of us have neck pain. More than 75% have pain in the entire back as well as the shoulders.
The least common place for pain in us was in the jaw, with 36%. That means 15 places hurt more often. RA only had 3 regions that scored above 36%, and lupus only had 4.
What that tells me is that descriptions of "tender muscles" and "aches," like you see in fibromyalgia drug ads and on a lot of websites, don't even begin to cover it! More doctors need to take a look at these numbers and really digest them. These are not aches and pains of aging, like some try to say. This is truly widespread pain of a type not experienced by people with some really serious pain conditions.
Also, think about the jaw getting just over a third of us. Things brings up a frustration I've had since the early days of my diagnosis, when I finally found a decent symptoms list instead of the useless ones a lot of website have. I realized that the whole time I'd been searching for what was wrong with me, I'd ignored fibromyalgia as a possibility because the lists almost universally featured jaw pain/TMJ and depression as "symptoms." I didn't have either.
The problem is that TMJ and depression are overlapping conditions, not symptoms. And 36%? That's nowhere near big enough to go on a list of 7-8 things, especially when we've got dozens of symptoms that effect most of us. (That's why I put together the Monster List of Fibromyalgia Symptoms.)
I developed TMJ later and I know it's incredibly painful, but it kind of makes me mad to consider the research that's gone into the fibromyalgia-TMJ link when the same resources aren't going into neck and back pain that impact so many more people.
Again, I don't want to give the impression that lupus and RA aren't extremely pain, debilitating diseases. They are. They're both degenerative and life altering. They can both damage and even destroy organs. I'm not making light of them or trying to say that fibromyalgia is "worse." I just want to point out the difference in pain experience to demonstrate that fibromyalgia is often underestimated and misunderstood, and that we have the information to fix those things. If we don't get the information out there, nothing gets fixed.
How does where you hurt compare to the places in the study? Do you have pain in areas not on the list? Leave your comments here!
The above, with comments, originally appeared here.
blog comments powered by Disqus