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Why I Left Some of the Fibromyalgia Support Groups

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When I was finally diagnosed with fibromyalgia a few months ago, I did the same thing I did when I was diagnosed with post traumatic stress disorder (PTSD) – I joined some support groups on Facebook.

It was the natural thing to do. Joining groups for those who experience PTSD was eye opening and being able to talk with others allowed me to accept and understand my condition.

I wish I found fibromyalgia groups as encouraging. I have found myself un-joining many groups simply because of the negativity was making me ill.

Granted, it is always good to be reminded that you are not alone. Other people have an idea as to how you feel when your body randomly spasms as you try to get to sleep, that we sometimes hurt in places we didn’t even think possible and that sometimes we wonder why we go on living. I confess, only hearing the bad things makes it hard to stay positive, but how can we be picked up if we don’t let others know we have fallen down?

What sucks is what I call “scaremongering.” Not that the members are doing it, but there are so many articles online that claim to know what causes fibromyalgia or how the illness progresses.

The worst thing about fibromyalgia is not having answers as to why. We know cancer is caused by cells dividing in a uncontrolled way. Doctors know how to treat many forms of cancer with a number of medical options.

It’s not the same with fibromyalgia. With no one known cause, many symptoms that can vary from person to person. In addition, professionals argue whether it is an autoimmune disease or a central nervous system disorder – when they believe it exists at all. Because of this, it is natural to trawl the internet for answers when all you can do is take medication for the pain and try to pace yourself through the day.

I went through the phase of reading everything I could find on the subject. I scared myself. I thought my life was over. I had been under the impression that if I lost weight, all my problems would go away. Finally I accepted that there was no answer and just focused on living with guidance from my mum (who also has fibro) and my doctor.

The problem with joining the groups was that people are always sharing articles in the search for answers. I couldn’t help but read them. The last straw was when a site was shared that claimed fibro was terminal. We know it isn’t. It made me realize that the old devil had been creeping back in – I was letting the unknown scare me.

I wasn’t even trying to pace myself. I didn’t even move beyond my bed, armchair and the loo in case I caused my condition to become worse. I don’t simply mean a flare-up. I mean causing me to be bedridden.

Thank heaven for The Mighty, my mum and my doctor, who reminded me that my life is mine to make it.

Now I ignore any posts that claim to have the answers, I have left some groups and allow those that I remind me that my situation could always be worse.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “HOME” to 741-741. Head here for a list of crisis centers around the world.

Follow this journey on My Fibro Feud.

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Thinkstock Image By: kongnana

Originally published: August 7, 2017
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