Fibromyalgia Action UK
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Anyone else wanting to connect via Twitter?


if you add your Twitter name in this thread I'll add you too!

Or if you follow me, I'll be notified and will follow you back.

It is wise to say right in your twitter profile that you have #fibro or #Fibromyalgia or that you are a #spoonie so that others that suffer will know exactly why you are following them. Lessens the chance someone will not follow you back :)

11 Replies

Hi, just added you x @fairylady1962



FibroAction is @fibroaction on Twitter. I don't always follow everyone back because my stream gets swamped (bad I know!) and I'm not on there enough.


it's ok Lindsey, I'm still figuring out using lists the best way myself. My stream is so flooded I can't keep up! hence using lists

I've already followed @fibroaction :)

Also, wanted to say straight up that I won't follow accounts that are rarely used. There's just no point. I'm sure you understand :)


@andanutherthing is following you now

happy hugs, kate :)


sorry i dont have twitter but willfollow you all on here i dont have facebook either i hear you all gasp lol love diddle x


I alsp dont have twitter, so will follow you all on here too :) love helen xx


I am WhackyJackie62

I like to use twitter as it keeps you in touch with the outside world when you've lost contact with friends etc over the way your illness has affected you. I cut myself off from everyone & now just have my family.

However there are thi gs I would'nt want to discuss on twitter.

I will add you now.


Jackie xx


thank you so much ladies! I appreciate that Twitter isn't for everyone, but I honestly do encourage you to at least try it. Especially if you find yourself up all night (like me) due to #painsomnia or a nasty flare. You don't have to use your real name (though I encourage you to list your first name in your profile) which may be even better. You get to vent if you want to or say exactly what you want with no repercussions and no one knowing who the real you is. So you get all the perks w/o feeling you are exposed and have no privacy.

Having friends on Twitter has saved me from a lot of very dark and painful times. They keep me sane even during the very worst pain flares. I really, really appreciate the value of that support any time of night or day. You should benifit too!

Sunshine and smiles,



I recently discovered that some people seem to have the impression that there are rules to using Twitter. Or that there is some kind of magic way to using hashtags "properly" or at all. The fact is that Twitter is the most organic and spontaneous social media there is, imo (in my opinion). It is no different than texting your friends via cell phone.

Everyone online eventually starts to use or understand internet short hand (aka internet slang, or internet abbreviations, etc). Usually to save time and key strokes. In Twitter's case, because of the 140 character limit. If you've ever texted someone, you can use Twitter. It's just as easy and convenient.

Hashtags are used to find other people talking about similar topics, to make a point, or relate how they are feeling. There is no rule that you have to use them in a certain way, or at all. Some people use them #JustForFun even.

Typical abbreviations used on Twitter are simple to learn as well. Or not. Again, no one says you have to use them. Some folks (like me) prefer to use full entire words when possible and only use "short hand" for type certain words. For me one of those words is "ppl" (people). I often forget to type the whole word when I'm writing on my blog or in blog comments.

I understand if it's a cognitive thing (all too well!) but that's part of why I like Twitter so much. I can jump in on any conversation that is going on at the time. Or scroll back a few hours to see what folks have been talking about. or use the search feature to find conversations that interest me. At that specific time I don't have to talk, join conversations or even do anything but click links to see photos or sites folks are talking about. At any given time I get to choose when I talk, or not. And that very much depends on my current state of mind (or fibrofog).

Why I stick with Twitter is the friendships, the instant and very personal contact with people just like me who need companionship, comfort, a smile, a hug or a laugh for the same reason. Because we live with a very trying and stressful condition. I know from personal experience that talking about it all helps me a huge amount.

That's what I want to impart to others. The benefits outweigh the inconvenience or difficulty of learning something new. Even better, you get to say and do whatever YOU want. No rules, no one to say that's against our guidelines, policy or whatever they want to push on you. It's your account, your voice and your choice. Go nuts! You may even have fun. :)

Sunshine and smile,



Sorry Twitter's not for me either, don't get it at all. I used it a few times and ended up with so many followers and couldn't figure out why. I guess you either love it or you don't. I just don't understand why people would post "Got up, had breakfast etc . . . . . ", perhaps it's me haha! Give me Facebook any day :) love the games on there too! :) :)


aww that's so too bad. it frustrates me knowing how much you really miss out on. But that's ok! I can't force people to do anything lol. I was on Facebook years before most of my friends too. Folks will catch up soon enough :)


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