Fibroska4 years ago

Hi folks, Firstly, I find this forum extremely helpful, knowing that you can link with others in a similar situations as myself is beneficial, mentally and physically; I don't know what I would do without it.

I have not only linked with people who have completed the Pain Management Programme, but to people who suffer from the same health issues as myself; and have received some expert/ helpful advice which I hadn't received from my GP.

I feel the forum is very clear on how to use, and having the wonderful admin team; who are all extremely approachable and friendly is so reassuring. I don't really think about people replying unless I am asking a specific question, and on those occasions I have never been disappointed.

I am extremely new to the whole social media/internet world therefore, I do wonder what kind of thing you are looking for members to post, how often is too often(would you like people to use it like a daily blog), I don't want to be taken as an attention seeker or a moaner, and i do understand that i can not dictate what others think; I suppose I don't want to turn into either.

Should it only be upbeat positive posts or is it ok to actually vent about what is affecting you.

I do find it difficult when in a flare up, I sometimes don't go near my PC for day's/weeks; should I be trying to post at these times.

I thank you for your attention and wish you all the very best in gaining the information required.

Remember and be kind to yourself.

Stay safe, keep well & be strong.

PainConcernProjectsPartner• in reply toFibroska4 years ago

Hi Fibroska thank you for taking the time to reply! It's great to hear that you are finding this forum a positive place to be and gaining support from it - these are exactly the kind of things that we hoped having this kind of space to connect online would provide, so thank you so much for this feedback. In answer to your comments above, the idea of the forum is that it would be what members wanted it to be, in that you could post as often as needed/wanted and that people would feel it was a safe space to share experiences of living life with persistent pain (the positives and negatives - on topics like emotional wellbeing, sleep, pacing, setting and getting along with goals, money, work etc), to share things that helped, to remind each other of aspects of the Pain Management programme that help, or that you might like to revisit , a place to find good resources and news (research, relevant things happening for the pain community). The moderators were keen to also make the forum a place where people could have informal, non-pain related conversations too - to keep those connections alive and create new ones.

And I would say absolutely post if you are in flare up, if it would be helpful for you to do.

Some of the other moderators might come on and add things but I just wanted to say, thank you for your feedback, it is really valuable to us and thank for posting and contributing to the community.

Best Wishes

Diana - Pain Concern

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