Tell them to buy a copy of "Fibro for Dummies", as 1. they're obviously in need of education and 2. It is in the MERCK MANUAL OF DIAGNOSIS AND THERAPY, a standard medical reference, and while it's currently considered neuromuscular, the actual causes aren't clear. (As with about 90 percent of cancers, say, but cancer is still read, right? Right!)....

Some doctors who don't "believe" in it, however, are sure that it's a trashcan diagnosis by some other doctor who didn't do the work and testing to find the *real* problem. (My GP is one of those, certain he will unravel the puzzle others have not. 16 years later, stilllllll going... Still no answers, but he's a stubborn guy.) Others were educated in the era of FM being "a woman's psych disease", so don't think of it as "medical" but just "attention seeking" and so on.

Or, if you're as cranky as I am this morning, you could reply to that person, "Maybe what you need is a pill, or better yet a magic wand, for your non-fictitious ignorance." But that's me. I'm in a mood.... Look out world!

My actual real-life response, btw, is usually to point out that it's a neuromuscular disease recognized by the American Medical Association as well as the British Medical Association. And if the doubter wants to take on all those doctors, they're welcome to try.

Honestly, I always engage, but I do that in the same way I've done with my epilepsy. My own grandmothers tried ot have me *exorcised* for pity's sake, so I just see it as one more way to let the world know that yes, these things are medical, not mythical, but thanks for their (non)support....

OK, wow, triggering issue for me. So sorry. Didn't mean to Hijack, Daisy.

No you didn't hijack Leo. I actually may respond to that person now by saying it's recognized by the American Medical Association and British Medical Association and is in the Merck Manual. You're obviously better educated about it than I am.

I just don't know why someone would go out of their way on a message board to basically call someone a freak.

Daisy,

As a male who has had fibro for over 30 years I was very upset at what that person said to you & started to reply about an hour ago but held off (you know the count to 10 thing). Also wanted to hear what others had to say to you. Leo nailed it.

My initial thought was to tell that person to get the book, like Leo did, "Fibro for Dummies," but I'm afraid I would have had to add that is if the book would not be above your intelligence level.

Don't let me get started on the fact that since I am a male I do not have it as yes, back when I was diagnosed (a female rheumy) that is was considered "the white bright female disease" - that came straight from a medical booklet that I was given, not some term from a blog or Facebook or whatever as none of that stuff existed then.

I do believe that the person has put me on my soap box as it did Leo. Some people need educating. In addition if that person feels you need a pacifier then I feel they need an enema. Oops, I guess I did not get off of my soap box soon enough.

Best wishes.

1sugarbear, I totally understand your anger, since it made me very angry and insulted. I was just now going to respond to that person, but a moderator deleted his or her post, so now I don't have the opportunity.

Beyond frustrating but I am very glad someone deleted their post. Idiot!

Isn't it amazing so many people have been diagnosed with these syndromes and complain of similar symptoms? There are many people like myself who have had it for years and it just hasn't gone away.

There are lots of conditions not well understood but I think fibro has gained a lot of acceptance over the years. The fact that anyone does not understand it, and I include doctors too, doesn't make it imaginary. One major difference between doctors who practice medicine and the scientists that develop the medicine they prescribe is that researchers have a much broader mind. Researchers continue to learn and study and develop drugs that they are unclear sometimes why they work but know they do. Doctors that keep up with current research are better doctors. They are open-minded and willing to learn. How on God's earth did we come as far as we have in medicine?

As far as people making snide remarks, ask to see the information upon which they are basing their narrow opinion. Tell them you realize it is a complex condition and some people do not have the ability to understand it.

The issue is there are some people diagnosed with it, but the severity of fibromyalgia differs person to person. I can tell you my old roommate would complain all the time of her fibro but decide to keep her place 100% clean and re-arrange the living room every couple of days. It makes no sense to me, because why would you be straining your back and such every couple days if you were in so much pain.. Personally I now do just the kitchen and by the time I finished yea I want to clean more but I'm so totally exhausted. And I don't clean as often as I'd like. Maybe 2 times a month if that.. The other problem is how invisible it is. I've been treated pretty poorly online also. but in person talking to doctors, therapists etc. They all tell me I can do more then I think I can and my expectations aren't "realistic".. I've asked for other assistance like a wheelchair in the past to help conserve energy but was told they didn't want me more disabled then I was.. etc.. I'm not on any pain meds and kinda left in the dust. It doesn't help to have previous mental health disorders diagnosed as some doctors simply write me off as soon as they learn I have PTSD, Autism, or was formerly diagnosed bi-polar (which Im not- haven't been on meds in over 3yrs)-[TBH I actually think my "bi-polar" was pre-fibro flares as I've had all these symptoms sporadically since high school just didn't have the vocabulary and was also called attention seeking-another reason I think it's not just fibro and something else-now my symptoms are more on a daily basis..]

Unfortunately this is no surprise to me as I have yet to meet anyone who believes our diagnosis of fibro, even my mother thinks I am faking it and looking for attention.

Best not to engage people and not to get stressed.

I agree that mental health diagnoses don't help. And news articles like the one I just read from the NY Times that includes several paragraphs on the high prevalence of major depressive disorder and other psychiatric problems among fibro sufferers. Maybe I will post a link to it. Another fibro sufferer posted it on facebook.

One of my favorite comebacks is "My invisible illness is more real than your imaginary medical expertise."

What's interesting abou the "association" with psycb issues? Is that CHRONIC PAIN CAUSES THEM. Gee, shocking, huh?

BTw, even Dr. Oz (the recognized expert in all things despite his limited actual expertise) has done shows on FM being real.

I wrote to the New Yorker's Atul Gawande because he doubted an architect with back spasms who was lying on the floor in front of him spasming in pain. I told Atul, you think that guy enjoys the display in front of you? Atul thought he was faking.

Atul Gawande is an orthopedist. Go figure. Actually he is more enlightened these days.

The New York Times ran some articles a few years ago doubting the existence of fibro. And my father, who believes in the NY times as some do in the Bible, told me he didn't believe what I had was real. Now he has Alzheimers, Maybe that was the cause of his faulty thinking!

People are uneducated. As I continuously learned as a nurse, you have to get all the facts, get the patient and the family and make sure you have all the information possible before you make any pronouncements. Amen.

That response pisses me off so much!!! Moreso just because it's so rude. It's fine if that person wants to think that....but why say something so mean and rude!? That person is heartless.
I have actually found more of this kind of thing from other fibro suffers. I'm a runner....albeit a slow one! And because I work 50 hours a week, I run/ power walk, do yoga, clean my bosses house every week.....because of this I've had people don't my pain.....this is incredibly more hurtful than people who don't understand thinking that. My daily pain is a 4-5.....and I work thru my pain. This often means I go home and watch tv in bed all night....or don't do anything but sleep on the weekends. Some days I can only do half a mile on the treadmill...other days I can do 2-3 miles. My flares are an 8-9 on the pain scale.....usual happen after work....and you'll find me shaking with pain in bed trying not to vomit from the pain.
I just try not to care what other people think or even understand. If you don't live it....you can't understand it.

Agreed - - if you don't live it, you'll never understand it. Sometimes I get frustrated because when I'm in a flare and so fatigued that I can't join in activities with my husband (e.g., on a weekend), I know he can't completely empathize. Sometimes I wonder if he doubts that I could be so tired.

#1sugarbear: I'm also a male with FM, which almost seems like it heightens doctor's skepticism that there's anything really wrong with me, sometimes.

Have you had that experience?

Daisy: I'm also a runner, or at least, used to be. So I really commend you for staying active in that way and engaged with the community. I've retracted from so many former athletic communities because I don't want to explain, defend, or try to help folks understand what's going on with me and why I have all these new, seemingly unexplainable limitations to my athleticism.

I admire what you're doing.