Tennessee Communtiy Project
7 Members
Created by Michelle Hamilton

Unsolicited Advice article from About.com

Those of us with fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) seem to be advice about our illness from people who (usually) mean well but don't have a clue what they're talking about.

I find it extremely amusing that so many people with no medical training and no knowledge of FMS or ME/CFS think they "get it" better than us, our doctors, and lots of researchers who've been puzzling these things out for decades. Some of the old standards are:

•"I'll bet you have mold in your house."
•"If you'd just get out more/get more exercise/get some sunshine/go have some fun you'd feel better."
•"It's all those pills you take that make you so sick."
I've come across a few others, as well:

•"With all that reading about health problems, of course you think you're sick."
•"If you'd move your legs more during the day, you wouldn't have restless legs syndrome."
•"My chiropractor/naturopath/nutritionist says she can cure you."
•"Stop drinking soda."
•"It's because you microwave plastic."
And of course, there's the fad-du-jour: take whatever supplement has made news lately and all your ills will be cured. This sometimes naive, sometimes bad advice can come from anywhere. Right after I joined Twitter I just had to reply to a tweet that said, "Fibro=tissues, myalgia=inflammation. Don't let your doctor over-diagnose you!" That was from an actual health-care worker (some kind of physical therapist), who claimed to treat people with FMS! I had to point out that actually, my=muscles and algia=pain, fibromyalgia doesn't involve inflammation, and if anything we're UNDER diagnosed.

The bottom line is -- we can't keep people from giving us unsolicited advice, but we can be smart about what we do with it. Some of it is worthless, but now and then you can glean something useful from it. The key is to do your own research, make your own decisions, and stand your ground.

What crazy advice have you gotten? How have you handled it? What's the best advice you've gotten about managing your illness? Leave your comments below!

30 months ago
Tagged
Results 1 - 10

  • Michelle

    I've heard just about all of them, especially the taking too many pills and the old house I just left, I always heard from my mom "I bet there's mold in your house.

    SHELL

    30 months ago

  • Jennifer

    I have gotten:

    it's caused by asparatame

    it's because you're allergic to gluten

    30 months ago

  • Angel

    Buawhahahahah!!! This article made my day. I gonna go start a thread on my blog and see what others can come up with too. This is really funny to talk about.

    Let's see. .... I've heard

    "It's because you have dry skin." 

    "You just need to EXERCISE more!!"

    "Just pray to God, honey. He'll cure you." (This one hit me especially hard. I have never felt so much like hitting someone in my life. I am a very religious person. And then when I stated I was a religous person I told them what denomination and they told me that it's no wonder!! I'm the wrong denomination! GAHHHHHHHHHH!)

    "Ballet and yoga. You messed up your body from all those years being a pretzel and stretching your body out." (Like, what the hell does stretching have to do with a NON inflammatory disease like FM?? My RA factor is negative you nitwit.)

    "You just need super mineral water, sweety! Like MonaVie!" (*slow blink* I honestly had no intelligent rebuttal to that one. I mean, come on. Really. What can you say? I like my Britta water filter + multivitamins just fine.)

    "You don't stand up straight, sweety. Your posture is horrible. That's why you feel the way you do." (Pardon me. 15 years of ballet and yoga and I have very good posture. Thank you very much. I only slump on the days when I hurt too badly to force my shoulders back. Chicken and egg, SWEETY. Which really came first??)

    30 months ago

  • Chris

    I was thinking yesterday, just HOW MANY of us were VERY active as kids.  I used to dance 3 hours a day - to stay away from my family. I guess it was an "escape". But that escape of exercising (dance), also creates hypermobility.

    I never heard of that, until a month ago, when my Physical Therapist said, I was very hypermobile. Huh? Who knew...

    So does that mean that all the kids sitting playing games all day instead of being a tomboy or dancing, or riding bikes, or  MOVING, will feel great in the future?

    Someday we'll poll everyone, because it does seem that fibro people were/are active, or have the attitude of TRYING not to quit, trying to keep moving.  Although that's also probably because we've been at the place of NOT being able to move! And appreciate it so much when we can move.

    Just a thought??

    30 months ago

  • Michelle

    I was an avid horse rider as a kid.  I did all the work that comes with them too like feeding them, grooming them, and even hauling hay.  I also moved around a lot with my parents and we did all the moving ourselves.  My dad couldn't help because he had a bad back.  

    The one that really gets me is Angel.  Aren't they trying to say that stretching and yoga are GOOD for FM?  It's crazy.  If that's true you should have never gotten FM to begin with.

    As far as what you said Chris about the kids that sit around doing nothing, well that's my kid and he is already showing signs of FM.  I have to find a dr that will look at him because of his age.  I know that "Growing Pains" don't exist so I've got to get him help.  If it's not FM it's CFS.  He is 16 next month and never has any energy and complains of pain all over all the time.

    Oh yeah Angel, that was hilarious about being the wrong denomination!!!  I too am very religious and I just couldn't believe that one.

    If the dr.s don't know yet I don't think our friends and family have a clue. 

    Jennifer, I've heard the aspartame one too.  I wonder about it though because they have found that it causes tumors, headaches, memory loss and can keep you from losing weight.  I have to use it though because it's all I can afford right now.

    I thought this was a great discussion.  I hope more people add to it.

    SHELL

    30 months ago

  • Lynnette

    Well here I am a day late and a dollar short. Just love this thread and the answers. I just love all the things people say will work, and sadly, I've tried most. Haha. I would wear a dog turd on a string around my neck if I thought it would help. It would keep the idiots giving advise away.

    25 months ago

  • Michelle

    LMAO Lynnette, you are so funny!!!  I would join you though!!!


    SHELL

    25 months ago

  • Susan

    LOL, if I hear someone ask "how are your meds working" one more time I think I'll go crazy!

    23 months ago

  • Michelle

    I am past crazy with that one!!!!


    SHELL

    23 months ago

  • Kenyatta

    I haven't gotten any crazy advice yet, and I think that's largely because people don't know about this condition. What bugs me is that when I tell them that I have fibro, they're like "Oh", and don't inquire further .

    23 months ago

Sign In to leave a comment.