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Postby mellabella » Tue Feb 22, 2011 11:39 am

Is it just me or what? Obviously i've trawled through other fibro forums and some of them leave me almost feeling as if i have to prove myself worthy enough to join. - ie.. be in enough pain and stress - be determined to get hold of and willing to use, and know about as many medications as possible, be disabled by the condition enough ( God help you if you have more than a few good days in a row or put forward any non medication alternative pain relief ) .. or even be depressed enough, before i can join " The Fibro sufferers club" so to speak. It's a bit frightening to be honest as on some of them you get members who obviously enjoy the kudos of being top dog who dispense out all the fibro advice, including what appears to be in depth medical advice that surely only doctors are qualified to to give out. I understand that there are people who do know a lot but there are ways, and ways of giving advice out without it being given out as a total ego boost. These people seem to latch on to any newbies ( Newbies who usually come to forums because they are already vulnerable ) and appear so knowledgeable - almost like a doctor - that the vulnerable newbie is obviously going to hang on to every word. One person gave advice which i though was bias, extreme and could have possibly been dangerous but when i tried to - diplomatically- put over an opposing point of view I was ganged up on by various members and shot down in flames. The posting was my first and last on on that particular forum . Since joining this forum and finding how supportive and open minded people are on here, these other forums seem even more of a dangerous clique.

So, is it just me being overly picky and sensitive or have other people found this?

Mel,
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Other forums

Postby shazq » Tue Feb 22, 2011 2:20 pm

Hi
I only use this forum and pop on and off FB, i am happy to just stay on here as do find it a happy friendly forum to. :hugs: :flowers:
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Fibromyalgia Awareness Day May 12TH.
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Re: Other forums

Postby Ldyalb » Tue Feb 22, 2011 2:21 pm

I haven't come across it myself, I have heard on other forums though that people have had some similar experiences elsewhere. I was initially tested for Lupus and joined a Lupus site and some people on there said that there were some forums or support groups they'd been on/to where they'd felt ostracised for not being sick enough. I think some people feel the need to be the most disabled, fortunately these people are in the minority! I have heard of parents getting competitive over their SN (special needs) children, sort of this situation;

Parent one: 'My DD is being tested for ADD, Dyslexia and ASD'
Parent two: 'Well MY DC is being tested for ADD, Dyslexia, ASD, dyscalculia AND aspergers'

Like it's some kind of competition as to who has it worse. My Dad (71) gets it a bit from other people his age and family members, like they all think their arthritis etc is the worst and that they need the most sympathy - it's a shame as everyone needs support, I'd hate to think someone wouldn't want to give me advice just because they felt I wasn't in as much pain as them.

I wouldn't stress about it though - you get it with everything. At Uni some of my friends would drive me crazy with their competitive studying 'Oh I start revising at 5:30 am, you just can't pass my course if you don't, it's harder than your course' etc and 'I have to learn 22 lectures an hour' type comments. My bf was guilty of degree snobbery too 'the only degree comparable with Economics is Medicine, that's hard too'. His course friend called my degree (Politics) 'the poor man's economics', I used to get jokes about how his course was too hard so he might switch to mine. Some people are just ***** lol. The medics were the worst though, yes we get it, medicine's difficult, but that doesn't mean ours are practically painting by numbers in comparison. I did get my own back on my bf, he didn't do a dissertation, his school did 4 'extended essays' instead in 3rd year - each 'extended' essay was 3000 words!!! My normal essays from 2nd year upwards were 3000 words at least. My dissertation was 13, 128 words long - not the same at all :D (apparently writing 3000 words each on 4 topics is as hard as writing 13 000 on ONE topic) but I digress... :tongueout:

I'm glad this forum isn't like that though. I haven't even looked at any other fibro groups, glanced around initially but this one seemed to be the biggest and the nicest so I joined up :)
'Think of all the beauty still left around you and be happy' - Anne Frank

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Re: Other forums

Postby loubie » Tue Feb 22, 2011 3:01 pm

this is just a nice place to be :D

having this illness hurts 24/7 and some can have really good days with hardly any pain at all
and that is great to hear :D
but for others its just ongoing dragging pain that we live with day in and day out :(
and nobody is better than anyone else, or should i say worse than any one else :yikes:

confused.com :crazy: :crazy: :crazy: :shock: :lol: :lol: :lol: :hugs: :blowkiss:

forgot to say :roll: always ask gp about meds & any vitamins, hurby thingys, as they can
mess up your medication.
loubie xx

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Re: Other forums

Postby denys » Tue Feb 22, 2011 6:31 pm

The thing is, noone even the experts can agree on either the cause or the correct treatment of FM as everyone seems to be affected, respond differently. Pain is subjective so i could have less pain then you (if it could be measured properly) but be affected more, tolerances and such like.

We all suffer and that makes us all the same, personally I always hope that people will have good days even if its only a couple at a time cos thats what I want for me therefore its what I want for everyone else only fair so :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: for all that need them and long may our forum flourish :flowers: :flowers: :flowers: :blowkiss: :blowkiss:
Denys

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Re: Other forums

Postby Ldyalb » Tue Feb 22, 2011 7:22 pm

denys wrote:The thing is, noone even the experts can agree on either the cause or the correct treatment of FM as everyone seems to be affected, respond differently. Pain is subjective so i could have less pain then you (if it could be measured properly) but be affected more, tolerances and such like.

We all suffer and that makes us all the same, personally I always hope that people will have good days even if its only a couple at a time cos thats what I want for me therefore its what I want for everyone else only fair so :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: for all that need them and long may our forum flourish :flowers: :flowers: :flowers: :blowkiss: :blowkiss:


Hear hear! (esp the forum flourishing part!!! :D )
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

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Re:Other forums

Postby denys » Tue Feb 22, 2011 7:33 pm

:lol: :lol: :lol: :lol: :grouphug: :grouphug: :grouphug:
Denys

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Re: Other forums

Postby tonydin » Tue Feb 22, 2011 9:53 pm

:clap: :clap: :clap: :clap: :clap: :grouphug: to all this is a exelent fourum well run and with a great mix of understanding people.
we all need some meds but many cause more problems than benifits ,
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Re: Other forums

Postby denys » Tue Feb 22, 2011 11:35 pm

Hi Mellabella, Hope you dont mind but I've changed the title of your post to Other forums as you weren't really talking about meds and I've moved it to general topics as I think you might get more people responding here :hugs: :hugs: :flowers: :flowers: :blowkiss:
Denys

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Re: Other forums

Postby loopyloo » Tue Feb 22, 2011 11:50 pm

it's so nice to listen to other people who dont have to compete about every little thing i have siblings who do so it's such a relief to be able to talk to people who dont it realy helps your state of mind to come on here and talk to people who get what you mean, thank you all :) :flowers: :grouphug:
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Re: Other forums

Postby cherryblossom » Wed Feb 23, 2011 12:49 am

Well, I think this forum's great! :D :clap: Since joining last July I have been made to feel very welcome, I haven't been too afraid to put any replies in, and it really does feel like an online family - people care enough just to say a few words and help each other along, and everyone knows how you are feeling as someone somewhere has usually experienced it. I try to pop on here most evenings but really miss it when I can't, like at the mo as we are down to one pc between six of us - the other one gave up!! :( Anyway, keep up the good work. All the best, Cherry :wine: :blowkiss: :grouphug:
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Re: Other forums

Postby Nellyphant » Wed Feb 23, 2011 11:32 am

I love this forum too. Loads of cyber hugs are given out and encouraging words and that really lifts my spirits and I'm sure it does for everyone else.

I'm newly diagnosed and already realise how many different levels of fibro there are and how it affects everyone differently. I wouldn't want anyone to feel as bad as I do on bad days and hope everyone feels as good as I do on a good day!

I just love that everyone knows exactly what we are all going through and can support us.

:hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs:
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Re: Other forums

Postby Nellyphant » Wed Feb 23, 2011 11:34 am

Oh, and I meant to say that I really feel for those that have fibro really badly and almost feel guilty that mine isn't that bad and I'm able to do lots more than some other fibro sufferers can. But I also can do lots less than others but I don't feel jealous of them, I'm happy for them and hope that it doesn't get worse for anyone.

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Re: Other forums

Postby FluppyPuffy » Wed Feb 23, 2011 2:25 pm

I use some other forums (mainly doggy related ones) and the way some members are treated and shot down in flames for expressing an opinion or asking a question that they deem silly and trivial is shocking :evil:

It's happened to me before, on a post about what type/brand of food dogs are fed on. I mentioned the brand that we were using at the time and was compared to being a bad mother feeding her kid additives and junk all the time. What they didn't know and realise, altho they quickly did find out, was that as DS has had problems with additives and colours, I had more of an idea about the ingredients than they actually did :tongueout: :tongueout: :tongueout:

Not had anything like that on here :clap: :clap: The majority of the time everyone seems happy with what is said, regardless of things being in agreement or not. I was rather shy and reluctant to post when I first joined, due to what I'd experienced on other forums, but it didn't take long to feel I was settling in here, part of a community that tries to help fellow sufferers, sharing experiences to hopefully help others get thru what FM throws at us :blowkiss: :blowkiss: :blowkiss:

I've had a look at some of the other fibro forums and it seemed like they were dominated by an elite clique. To join them, it seemed like you had to go thru some sort of initiation based on the amount of pain you were in, number of pills and types of meds you took, who could do the least amount of things yet get the maximum amount of sympathy and help for it, and other weird and not so wonderful things. Seemed more like some kind of dark fraternity rather than a public forum :yikes: :yikes: :yikes: :yikes: :yikes:

Plus they didn't have :penguin: [chocolate] :wine: :easter1: :easter2: :rudolph: :xmasdance1: and the bespoke level of :crazy: :crazy: :crazy: :crazy: :crazy: we do on here. I would have thought just that was enough to make someone want to join us :clap: :clap: :clap: :clap: :clap:
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Re: Other forums

Postby hamstergirl » Wed Feb 23, 2011 3:40 pm

I am only on this forum and am quite happy here so dont need to look at any more sites. You can come on here and moan, doesnt have to be about fm, anything and you will always get a reply, especially from the lovely mods who do a wonderful job and who makes sure that everyone is welcomed warmly.

Everyone will always have different opinions about things that help our fm. There's so many meds that made me feel worse yet others who take them say they help. I can exercise and it helps me but i know others cannot. No one should judge anyone only you know what is and is not good for you.

Any relationship will only work if you can respect other people's opinion whether they are the same as yours or not.

So i do hope you fell part of this FM community on here.

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