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The UKFibromyalgia Forums • View topic - ppl using FM suffers to cleam info from them



ppl using FM suffers to cleam info from them

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Re: ppl using FM suffers to cleam info from them

Postby ouchisme » Fri Mar 18, 2011 9:04 pm

:wave:

Had been v quiet on the posting of my 'friend whose concerned about symptoms'. Hoping shes got the message! Most prob come back as a different 'person'. Its ppl like that, that make me extremely :x My partner said that even he knows swelling hasn't got anything to do with FM. Hes been checking out info for himself aswell as asking me q's. :fingerscrossed: don't hear from her again
hope all is well in each others worlds x
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Re: ppl using FM suffers to cleam info from them

Postby cherryblossom » Sat Mar 19, 2011 1:11 am

Hi All. :D I'm just gobsmacked that people actually 'want' to be ill, especially with this illness! :yikes: I'm amazed! I'm like one of the others on here and don't pick up on these things too easily either and get easily 'misguided'. Gives me the creeps too that there's people about like this but I suppose there is in every other part of our lives, be it the streets, newspapers etc so I suppose on the internet shouldn't be a surprise really. Sad.I like this forum as I feel happy and welcomed on it and everyone is so friendly. So glad our mods on here work hard to keep it a safe place for us - :clap: thanks guys Anyway people, take care all and loadsa gentle :hugs: :hugs: :hugs: to you all. Cherry :blowkiss:
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Re: ppl using FM suffers to cleam info from them

Postby Emerald » Sat Mar 19, 2011 1:33 pm

I have to be wary as a group Chair too, I get all sorts trying to peddle their wares and expensive courses, miricle drinks etc. What they do is see the national charities policy on them and go looking directly for the groups details to hasstle them direct, quite cheeky tbh when they know we will share the same policy!
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Re: ppl using FM suffers to cleam info from them

Postby ouchisme » Sat Mar 19, 2011 1:47 pm

:wave:

I suppose in a way i'm fairly naive too. Ur not alone in that. Would never occur to me to use different media tools like that :dunno: Obvious being bhind a keyboard makes it v hard, i suppose, to read 'sincere' postings. As the written word can b seen, mayb in different ways. Interprations and all that. Soz not with it 2day :lol:
Emerald i can't blieve that ppl would try to do the things u've described on a group of ppl for their own gains :dunno: Bad enough that it goes on to individuals, but to a support group where ppl have different feelings about their illnesses. Ranging from, despair, acceptance, bargaining with a higher being (dear god plz do this and i'll do that), sadness, severe depression etc. They should have the book of law thrown at them! soz if affended any1, but feel v strongly about it since seeing it with my own eyes. Hope all is well in ur worlds soft :grouphug: x
Had symptoms for 5yrs. Dx February 2011
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Re: ppl using FM suffers to cleam info from them

Postby thewireweaver » Sat Mar 19, 2011 1:54 pm

I like the soft :grouphug: thing :)

My other half has been giving me extra big hugs since I got my dx and it hurts my ribs! I love him though so he's forgiven :)
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Re: ppl using FM suffers to cleam info from them

Postby Emerald » Sat Mar 19, 2011 4:24 pm

lol they gotta get past me then a committee 1st. Have to get up really early, like few years early to get one over on me.

Some of the courses I told one guy, why would I recommend it to my members when they can get the same stuff he is implimenting free through the jobcentre or the NHS, which if you know where to look in my area like I do arent hard to find. I wouldnt have people throwing away over £100 quid for the privelage.

Herbal drink places too, we have a Nutritionalist who has done talks to the group and a few members have had really positive experiences with her so its a case of trust what/who you know and I remembered about the specific thing trying to be peddled she said to be very wary of so they were politely told to do one.

The decisions etc made behind the scenes of support groups by committees to keep members safe and the group going is no mean feat. Id never done anything like it before till last year and it was a steep learning curve, I enjoy it tho even when balancing home and group stuff gets difficult at times it keeps me sane and grounded as you feel a sense of responsability and achievement making even a little difference in someones life including your own.
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Re: ppl using FM suffers to cleam info from them

Postby ouchisme » Sat Mar 19, 2011 8:17 pm

:swear1: :swear1: :swear1:

I'm absolutely furious!!! The woman was back on the forum. Said that there is immflammation in FM. Her having probs getting a dx etc. It made me look like an absolute moo 2wards, which i haven't, i worded it v precisely and without being mean. Makes me look like i haven't got a clue etc. So another place i thought i could talk to other mums etc of coping skills etc is now defunct. I know i don't know alot about FM, but i was fairly sure i was correct, now doubting myself cos of fibro fog and memory probs. I suppose i should say that its their loss etc :dunno: :needhug:
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Re: ppl using FM suffers to cleam info from them

Postby Roseofsharon » Sat Mar 19, 2011 9:11 pm

:grouphug: :hugs:

I'm so sorry ouchisme. You are correct that inflammation is not a part of fm so don't be hard on yourself.
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Re: ppl using FM suffers to cleam info from them

Postby Adele » Sat Mar 19, 2011 9:17 pm

:hugs: :hugs: :hugs: :hugs: :hugs: anger isn't good for you honey. maybe ask her if her hair falls because of the fibro because your's does, does she get the purple rash and have her earlobes doubled in size? make fun of her, she deserves it.

pm for a rant if you want xxxxxxxxxxxxxxxxxxxxx
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Re: ppl using FM suffers to cleam info from them

Postby nutty1 » Sat Mar 19, 2011 9:59 pm

:clap: :clap: :lol: :lol: adele,take a step back ouchisme ,otherwise you gonna go down with a bang ,fm hates stress aggro etc .as i`m sure you already know :hugs: :blowkiss: :flowers:
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Re: ppl using FM suffers to cleam info from them

Postby FluppyPuffy » Sat Mar 19, 2011 10:01 pm

If this is causing as much concern and upset as I think it is, the best thing to do (as I said in a previous post) is report it to the forum's moderators. They will look into it and take the appropriate action. Unfortunately, every forum seems to have these sorts of members which detracts from the genuine members wanting to contribute and get the best from the forum.

If it were me, I would either stay off the forum completely, or if it was one I wanted to continue using, then try to avoid any threads involving the member causing the problem.

I don't think there is much more to be said with it being related to another forum. Unfortunately these people exist to seemingly get their kicks from causing such incidents and upsets.


If your dog doesn't like someone, then you probably shouldn't either
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Re: ppl using FM suffers to cleam info from them

Postby Emerald » Sat Mar 19, 2011 10:07 pm

I thought it was CFS you could get inflamation with not FM. Thus why im diagnosed with both due to overlapping and a post viral thing going on.
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Re: ppl using FM suffers to cleam info from them

Postby hamstergirl » Sat Mar 19, 2011 10:24 pm

Hi

I Have both CFS and FM and I have no inflammation.

Lorraine
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Re: ppl using FM suffers to cleam info from them

Postby Emerald » Sun Mar 20, 2011 3:25 am

Nah was just I read somewhere that you could with CFS whereas FM you dont unless its summit like arthritus causing it in certain areas thats affected.
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Re: ppl using FM suffers to cleam info from them

Postby denys » Sun Mar 20, 2011 2:37 pm

Ochisme, I agree with Fluppy the only thing you can do is report her, if the forum is a good one then the mods will correct her publicly and then have a quiet word with her regarding her actions :goodluck1: and as Flup also said avoid her threads or stay off that particular forum :goodluck1:
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