Pelvic Pain Support Network
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What do you think of this ?

Institute: Health and Biomedical Informatics Centre, University of Melbourne

Topic: Understanding individual perceptions regarding how different social media influence health outcomes for people with chronic pain

Contact: Mark Merolli, PhD Candidate, 0408 513 984

Online survey:

11 Replies

I've done it.

Not sure what results they are trying to get though or how this might help chronic pain sufferers generally.

there was no option to ask for a copy of the paper to read when its done.


I've done it too. It will be interesting to read the outcome, I hope we get the opportunity.

I think the study may be more related to what type of chronic pain sufferer uses which type of internet platform, rather than what help this study will be for chronic pain sufferers. BUT I could be very wrong.

People with chronic pain who have no actual diagnosis or accountable disease/injury and more importantly, have unspecific and changing symptoms will usually be put in the chronic pain syndrome (CPS) central sensitisation (CS) group which means pain 'exists' but there is no actual reason for that pain. PAIN as a disease! This can occur after an identifiable problem has long since healed and disappeared.

It may be due to altered pain reception, which is treatable by cognitive therapies.

This patient category is said to be often female, over 50, prone to catastrophising, not usually highly educated, from a lower social status. . . .oh! the list goes on. It's all about biopsychosocial aspects rather than a bomedical reasons for a disease.

I wouldn't be at all surprised if they find that the CPS and CS sufferers are more apt to be very involved in social network sites like facebook groups for pain.

I can't bear much of them myself, as I find that they sometimes have more of a pain content, in a 'poor me' way, rather than trying to find sensible solutions (but that's probably just me being rude :0) I have been diagnosed with central sensitisation along the way so should love facebook pain groups if my theory is correct ;)

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Helen legs, agree with you about the poor me's - but sometines we all need time out and a moan.

That's interesting what you say about the demographic for CPS and CS. I fear I am a CS sufferer (my injury was 16 yrs ago and started suffering pain 11 yrs ago, various malalignments have been corrected but I still have pain).

I am under 50, educated and not lower social status. I'm very insightful into my

Condition, having read several nedical papers on it, and have never dramatised it.

I know my brain is making this pain, so I do alot of meditation and mindfulness to switch brainwaves and try and push it into the background. I use distraction too. Infact, I have a great time going from one alternative therapy to another, picking and choosing what activities I do. I've learnt so much about myself and discovered hidden talents, its almost worth having the pain, because of it my life is so enriched.

Without the pain, I would be stuck in a 9 - 5 dead end job, because jobs are hard to come by where I live, if you have one you keep it. Now though, I have my own business, work my own hours, its quite ironic that pain has brought me so much freedom and choices. Usually pain is associated with imprisonment (either being imprisoned within a body that refuses to work, or within a house because its too difficult to get out and about, or within failing social and medical services).

I have pain whether I do things or not, and I believe having fun is a priority, and yes I will pay for it with more pain, but its only pain being manufactured by my brain. Its only pain.

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Oh Zanna,

What have you done?

I have been told by so many Doctors " It is ONLY pain, it is not going to kill you!"

But Zanna, even if we understand the physiology, which I do, the pain is my torturer and tormenter!

I have never been on any site and whinged, whined, moaned, EVER!

I come to THIS site to respond to emails that I think I can help with, offer support to others, and sometimes, though rarely, to find support for myself, on the days when I am driven to despair, to self-harm just to FEEL something other.....!

But, if I am now going to hear in this, my safe place, "It's only PAIN!" I do not think I will come here.

So happy for you that your pain has liberated you and given you such freedom and empowerment. Keep up the good work of telling people how great your life with PAIN is.

I feel sorry for those who like me have lost their careers, their relationships, who live on benefits and have lost so much.

You could give them lessons on setting up their own businesses, when they haven't changed out of their pyjamas for weeks. Those were the people I supported.

Thanks to the members who really CARE and SUPPORT.

I hope you find someone else to encourage you, because I'm sorry, but it can't be me anymore.

I can't be in this group anymore.

I feel SO hurt and insulted.

I get enough negative, destructive comments in my life.

I don't need to get them here too.

Hugs to those I care about xx

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Hi SuzyQ, I agree with everything you say. Pain is the worst thing coping with day after day,what is she talking about,does she really know what we go through, I hate the pompous attitude,we dont need it. Dont leave this site just for one persons silly reply, Hugs to you as well, Jacky.


I am highly educated, had a Professional career for 21 years, until my incontinence became too difficult to manage. I was effectively "asked" to leave my teaching career (which I loved) because I could not leave my class unattended for toilet breaks. I am extremely knowledgable about my condition "Chronic neuropathic pelvic pain caused by Pudendal entrapment".

Zanna, I do not sit and watch trashy TV, mope endlessly on Facebook, and whinge about my life.

I paint, create, write, compose poetry, take on-line courses.

However, I am still in debilitating pain, on benefits, incontinent and in my pyjamas.

Wouldn't want you to think that I was a lesser being than you.

Your attitude is beyond belief...

I haven't bothered with the Survey, because it won't fix me.

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Oh Jacky,

I wish I had seen your message before I turned into a pompous so & so!!

I am in floods of tears. She hurt me, you, us all SO much!!

I am so sorry. I reacted on impulse. Today is a really, really bad day.

I should have waited until I was calmer.

I didn't mean to upset you, or anyone.

I just wanted to express the reality that pain hits anyone, regardless of class!

It steals from us. It takes our dignity away!

My Mother would be horrified by my messages. I wasn't brought up to behave like this.

Pain has driven me to it, and to be told it is "only" pain, when it has stolen so much from me just hurt so much.

I was angry for those who might feel intimidated by a strong character like that.

She made me feel like "white trash"!! And I'm not. If people seek help on a Facebook site and it helps them, why should it concern her?

I am sorry Jacky.

I would have a cup of tea and calm down, but there is no one here to make me one at the moment! Typical.

I am calmer now though, and I thank you got caring enough to reach out.

That is what I thought this group was all about!!

Hugs to you too, Sue xx

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I too have completed the survey.

Helen I will send you a message this week, i am after some advice re the dreaded ESA.

Best wishes to you all



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I have completed the survey.

I am surprised at some of the comments here though. I have lived with pain my whole life and been brought up to think that I am a hypochondriac when in fact I have 5 different debilitating ailments. I have been in the position of not even being able to stand up and gone without food because it hurts to much to make it.

I have used blogs/facebook and chat rooms to whine and get support when I've been at my lowest. I think that's what the questionnaire was about tbh. Without these site I would have felt even more alone and like nobody understood me. Thanks to facebook/blogs and chat rooms I have made friends from all around the world who are there for me on my darkest days and vica versa.

ANYONE can suffer with pain and everyone deals with it differently. Nobody should judge on here or any other "support" site. Pain has nothing to do with class or money and I think you'll find it's more likely that the pain is the reason people ar on benefits not the other way around. Ignorance is the biggest problem for chronic pain sufferers out there!!

Hugs to all in pain, it really and truly is debilitating xx


Your safe haven remains SuzyQ, I do understand the need, when all else around us don't have an inkling. . . .I don't mean understand, I wouldn't want anyone to truly know and really understand. . . .that would be too cruel.

I think that is why we come here; and yes everyone needs to spout off every now and again, agreed, zanna; I think the fact that we don't over dramatise, is another reason to come here rather than some others places. It also demonstrates that everyone doesn't sit squarely into a CS, CRPS and CPS slot.

We are all different, yet do have a commonality but there is no doubt that we will all deal with things differently too.

Hopefully we can gain something from those different dealings, but in the mean time please realise that the 'name on the tin' is pelvic pain SUPPORT network and I'm sure that is what everyone involved is endeavoring to do.

Edited to add. . . . .

Have just read some of the posts I'd missed above and would like to say that I am not the person who gave these classifications, biophsychosocio babble did, I'm just one of those who have been tagged!!

I realise that I have judged some; people who whinge incessantly without ever offering help or constructive advice, some people are too needy and self centred and although I am lovely ;) I am not Mother Theresa. My tea towels are mainly plain.

I am never quick to judge however, in fact I spent a small fortune on phone calls to a girl in a different continent, until I realised just how needy (but still didn't abandon her, ahhhh ).

I think the thing that really gets me is that some do just take and never give anything back. . . . . was that part of the survey??

Thing is, I am over 50, have been known to watch Jeremy Kyle, and in my pyjamas, so they must be right. . . . . . Erm, except they are not!! Very recent nerve conduction tests show sciatic pelvic nerve entrapment, my symptoms have always shown this and 3 other pelvic nerves, so no CS for me now. It's only taken 5 years for them to believe me (which stinks!)

Helen xx

I haven't got a message Marion ?? just send again and I will help if I can.

Reply to this

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There you go you see I was wrong. This

explains the reasons for the survey.

When I was diagnosed as having CS (alone that is; siting a well resolved, 10 year old back injury as the catalyst) The very eminent pain doctor stated that my involvement with pelvic pain internet forums was actually helping sustain the central sensitisation and until I moved away from forums such as this and the wrongly held belief that I had actual pelvic pathology, specifically piriformis and resulting nerve issues, I would never be able to gain from any cognitive therapies which would otherwise be my salvation.

Of course he was completely wrong as recent nerve tests have shown.