Fibromyalgia and Online Support Groups

Welcome Back!

I belong to an online Fibromyalgia Support Group. I spend so much time on the computer that it made sense to me to find a support group online as well. It’s run by a lady named Catherine and has members from around the world – Australia, England, Canada, and the USA.

It’s a super supportive atmosphere and the one thing we are very clear about is that none of us are doctors and we are not there to dispense medical advice. We can talk about what does and doesn’t work for us, and our own medical experiences, but we can’t diagnose you based on YOUR symptoms, as Fibromyalgia can have SO many symptoms, it would be impossible to try.

~~~~~

One of the so-called “tests” used to determine if you have Fibro or not is the 11 Tender Points as shown here:

fibromyalgia-disease-overview-18-638

And for those of you unfamiliar with Fibro and all its many symptoms, this diagram might help you see how insidious this disease really is:

Fibromyalgia-Signs-Causes-and-Treatment

And here are some overall averages taken from a US study of percentages of people who experience these symptoms:

symptom_percent

So you can see why Support Groups are so necessary when you live with Fibro, or really any disease that causes Chronic Pain, such as Osteoarthritis, Rheumatoid Arthritis, Lupus, Ehlers Danlos Syndrome, MS and more.

~~~~~

Well, I joined a new Fibro support group a few days ago, and just had the most interesting experience. Yesterday, the Leader of the group “diagnosed” a member with a symptom she was experiencing (bloating and constipation) and told her she had “Leaky Gut”. I suggested that she shouldn’t diagnose, and what if it was something else, such as Gastroparesis?

My goodness, did I ever get a pissy response!!!! I took screenshots (which I won’t post here), but I ended up just leaving the group. I was told that this woman has 25 years of living with Fibro, she’s done years of research with top doctors, and she knows what she’s talking about. Apparently, this woman is determined that the only way to resolve Fibro is with Bovine Colostrum and a Chiropractor. Now, I’m willing to try the Bovine Colostrum to see if it helps, but you DON’T diagnose someone definitively, EVER. It’s even in her rules, which I quoted to her, which made her even angrier!!

And not only that, how dare I suggest Gastroparesis and the radioactive tracer test that would diagnose that because that would make this lady’s “Leaky Gut” even worse. FACEPALM (yes, she really put the Face Palm Emoji in there).

And not only THAT, how dare I tell her what to do in her OWN GROUP. She’s never been angry before, I’m the first one in the whole ten months to upset her, blah blah blah blah blah blah (yes, I am that talented!!)

So, I told her I was leaving the group because I obviously couldn’t state my opinion without being attacked, she couldn’t follow her own rules, and I don’t need that kind of energy in my life. I reiterated that it’s okay to suggest possibilities, yes, but you never tell a person that what you suspect they have IS what they have. That’s just being irresponsible. Then I called her an @ss and left. Oops!!

There is always hope.

About LadyPamelaRosehttps://pamelajessen.comWelcome! This blog is my life with Chronic Pain, Chronic Fatigue Syndrome, and living with Invisible Illness, including Fibromyalgia, Osteoarthritis, D.I.S.H., Hip Replacement, Trigeminal Neuralgia, Myofascial Pain, Diabetes Type 2 (on Insulin), Gastroparesis, Hypothyroidism and Bipolar Disorder. Despite this, I am also a volunteer with Patient Voices Network - an organization in British Columbia that allows everyday people to have a voice in how healthcare is delivered in our province. I also volunteer with Island Health in a similar role. I want people to know they can have a say in BC's Health Care and that voice can be in any number of different ways. It's important for our voices to be heard and I love to talk about how that works!

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