Who has friends with fibro

All your fibromyalgia experiences, questions and answers.

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Who has friends with fibro

Postby painprincess1 » Fri Jan 17, 2014 9:59 am

I was writhing a reply to someone on here when it struck me ,I sometimes meet ppl I don't no who say they know someone with fibro and sometimes I meet someone who has it,but I don't have a real friend who does,would help if I had a mate I guess lol.but really do any of you have mates with it who u can turn to you no someone not online you can ring or go see when you are really down.
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Re: Who has friends with fibro

Postby elaineann521 » Fri Jan 17, 2014 10:36 am

hi i have facebook friends who have it so can message them.the only person i know understands what fibro is,is one of my sisters because she knows someone who has it.i am feeling proper fed up today as i have had a bad few days with the weather i always said i wouldnt wish this on anyone, but i would like other people to experience it for a week so they could understand
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Re: Who has friends with fibro

Postby Garyl » Fri Jan 17, 2014 10:42 am

Know no one inthe real world with Fibro all the people with it are Cyber friends
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Re: Who has friends with fibro

Postby Kalev » Fri Jan 17, 2014 10:53 am

Yes I understand were your coming from I live in Bristol & seems there are no other men in Bristol who have Fibro, which I don't believe. There are times when I just need to call someone who understands & just have a chat it seems the art of talking is going out of fashion so I really understand.
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Re: Who has friends with fibro

Postby dejay » Fri Jan 17, 2014 10:56 am

I don't have any friends with fibro, But my daughter was diagnosed with fibro. is it hereditary? I sort of knew by her symptoms, before the dr diagnosed her , she has other health problems, but I feel very bad that fibro is another problem,i wonder if I passed it down to her,when I see her struggling my heart breaks I am now crying as this is the fist time I have spoken about my fears, lol
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Re: Who has friends with fibro

Postby MikH-D » Fri Jan 17, 2014 10:59 am

I consider myself quite lucky, both me and my sister are diagnosed with fibro and we are best friends also


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Re: Who has friends with fibro

Postby Kalev » Fri Jan 17, 2014 12:14 pm

Living with Fibro is no joke whether it's you or someone you love it can really bring you down. There are many Fibro support groups around the country but they seem manly to cater for woman which is fine as Fibro seems to attack more woman then men. I've spoken to some suffers & they say the best thing is to reach out & try to find some other suffers near you & get in touch. You are not alone but finding someone you can trust & speak to is hard but well worth the effort & forums like this can help the other great problem I've found is getting people to believe that your really sick & it's not just all in your head. best of luck people are out there just keep looking.
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Re: Who has friends with fibro

Postby HeppiBean » Fri Jan 17, 2014 12:20 pm

I have 2 friends with Fibro, I've been friends with them for years, long before any of us were diagnosed or even showing signs.

1 was diagnosed over a year ago, but since I told her that I have been diagnosed with it also she has been off with me, and the other was diagnosed shortly after me, by like a couple of weeks. She hasn't gone funny at all.

It is good to be able to speak to people who know what you're going through that aren't just online xx

Katie. Mummy to 2 with Fibro and HMS.
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Re: Who has friends with fibro

Postby Diane64 » Fri Jan 17, 2014 12:26 pm

Yes my best friend of 20 ish years was diagnosed about 5 years ago, I have to say I was guilty of not understanding alot about fibro and was a bit dismissive of her saying how much pain she was in..for this I am truly sorry to have acted or dismissed how ill she was/is..I was diagnosed last year and since her diagnosis I believe there is so much new information and initially I googled for loads of it, so now we kinda bounce ideas and thoughts every now and again, the good thing tho is we don't constantly moan to each other which cud land up depressing. my sister was also diagnose a few years ago, my mum, other sister and my son all displaying symptoms also.
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Re: Who has friends with fibro

Postby Kalev » Fri Jan 17, 2014 12:59 pm

Friendship & talking to people who understand is the most important thing in granule but even more so if you have Fibro, the trick is getting in touch with them & this is made even harder by the lack of honesty & trust that's out there. I'm just trying this forum but so far it seems very good but I wish there was a way to speak to an individual as a posed to just posting things but it's early days yet.
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Re: Who has friends with fibro

Postby FluppyPuffy » Fri Jan 17, 2014 2:50 pm

:welcome: to the forum Kalev :cow-wave: :cow-wave: I hope you'll continue to find that the forum is like your first impressions. We do our best to try and keep it a friendly, understanding and supportive little sanctuary for members of our little FibroFamily to escape to :bear-dancing: :bear-dancing: :bear-dancing:
Kalev wrote:There are many Fibro support groups around the country but they seem manly to cater for woman which is fine as Fibro seems to attack more woman then men.

I don't think it's a case of the groups catering mainly for a mostly female membership. Yes, most groups do seem to have mainly women attending them, but they are equally open to men as well, it's just that a great number of men with FM seem to be very reluctant to let it be known that they have the condition, even to their closest family and friends at times. I'm not going to speculate as why this may be the case, as the male psychi is as complex and involved in its own way, as that of us females. There have been a few more men joining us over time tho, so maybe things are starting to move in a slightly different direction on that front, albeit very slowly.

Where I am, there seems to be very few fellow FMers in the area. The nearest support group for me is about 25 miles away, and not being able to drive, plus OH working shifts makes it difficult to attend meetings, and that's before other factors are taken into consideration :( :( :( I recently completed a Pain Management Program, and I was the only one on it with FM. The peoples behind the PMP even acknowledge that there seems to be very few with FM and/or other similar conditions in the area they cover.
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Re: Who has friends with fibro

Postby Kalev » Fri Jan 17, 2014 5:47 pm

Hi Fluppypuffy,
Thanks for welcoming me I do hope my remarks have not offended anyone I have Asburgers as well as Fibro & can say the wrong, I was just trying to say that here in Bristol the groups mainly cater for women & as there is nothing at all wrong with that it leaves me & another man who wishes to talk about his struggles out in the cold. I understand that on the whole men don't talk much & don't share there feeling Ect. but I think that's wrong & as my family think that it's all in my head & I should just get on with it. I find it very hard & I know I'm not alone no matter what sex you are. I'm not very good on a computer & much prefer to talk to people but it seems these days that going out of fashion & I guess I'll just have change with the times. I do hope you'll replay & If I offended anyone I'm truly sorry
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Re: Who has friends with fibro

Postby painprincess1 » Fri Jan 17, 2014 6:52 pm

Hi Kalev ,you have not offended me and I'm 99persent sure no one else hehe, and I understood what you meant so did fluff Asshe said in pp.i was brought not far from you in brighwater , also we have a good few men on here who do chat a lot ......and they say women talk a lot lol.joke no really everyone I have talked to on here is freindly and kind and funny. When u got this u have to laugh when you can.so relax and next time you post bring chocolate biscuits grins xxxxx
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Re: Who has friends with fibro

Postby SchroedingersCat » Fri Jan 17, 2014 7:15 pm

Yep, 3 real friends with it, one who has had it for decades
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Re: Who has friends with fibro

Postby FluppyPuffy » Fri Jan 17, 2014 9:36 pm

Kalev wrote:Hi Fluppypuffy,
Thanks for welcoming me I do hope my remarks have not offended anyone I have Asburgers as well as Fibro & can say the wrong, I was just trying to say that here in Bristol the groups mainly cater for women & as there is nothing at all wrong with that it leaves me & another man who wishes to talk about his struggles out in the cold.

There's absolutely nothing wrong with what you've said Kalev, so no need for any apologies or for you to worry about things. What you have posted is how you have found things to be in your area, which is very similar in a lot of other areas too. And not just with groups for FM, it's something that can be seen support groups in general. I think if anyone got their words mixed up, it was me as reading back what I actually posted, it just doesn't come across with what I was trying/wanting to say :oops: :oops: :oops: :oops: :oops: :oops: :oops: So apologies from me for that, and I'll try again :fingerscrossed: :fingerscrossed: :fingerscrossed:

Whilst support groups do cater for both men and women, as the majority of members tend to be women, they can tend to head off in the direction where they mostly cater for them. Then, when a man (or a number of men) joins the group, things that are added/included for them seem to just tagged on at the last moment, like an afterthought, rather than being a regular part/activity of what the group usually does.
Kalev wrote:I was just trying to say that here in Bristol the groups mainly cater for women & as there is nothing at all wrong with that it leaves me & another man who wishes to talk about his struggles out in the cold. I understand that on the whole men don't talk much & don't share there feeling Ect.

With you saying this, it reminded me of a scheme that was being piloted a few years ago by Age UK with the aim of offering older men support and an outlet for their thoughts and feelings whilst at the same time sharing skills and activities and socialising. It was called Men In Sheds. Maybe if someone was able to take the basic idea and work it into something that could cover/include conditions/illnesses/disabilities, it could encourage more men with various problems to come forward, and together, take part in suitable activities, and talk to each other about things in the way that men do, quite often stood side~by~side and making or repairing something from what I have seen with the men in my life, then they would have a similar benefit from a group that the ladies get from theirs.
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