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Unsolicited advice about Fibromyalgia & CFS

Thursday 11 August 2011's Adrienne Dellwo reports:


Fingers in earsUnsolicited Advice About Fibromyalgia & Chronic Fatigue Syndrome

By Adrienne Dellwo, Guide
August 9, 2011

Blog Classic: Aug. 17, 2009

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, 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!

Learn more or join the conversation!


Suggested Reading:

Things People with Chronic Illness DON'T Want to Hear
A Simple Understanding of Fibromyalgia
A Simple Explanation of Chronic Fatigue Syndrome


The above, with comments, originally appeared here.


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