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The UKFibromyalgia Forums • View topic - Saying Hello



Saying Hello

Introduce yourself and find fellow sufferers in your area or who share the same interests.

Moderators: perseus, *Lisa*, FluppyPuffy

Saying Hello

Postby Lady16 » Tue Oct 15, 2013 9:51 pm

Hi. :-D
Have done this once, but think I put it on a reply answer. Not great on computers, so hopefully, this is right, lol. My name is Leigh, I have 3 sons, eldest 26, middle son 24 and youngest is 12. I do not have Fibro, it is my 12yr old son who has it. He was finally diagnosed in January of this yr, though I think he has had it since he was very young. For years, we have had different diagnosis, like Perthes, Hyper-mobility, Hypo-mobility, Jeuvenille arthritis, Lax-Joints, in his head....until, at last :-o , a Doctor who wanted to get us some answers, and who did his job properly, and so, here we are, a 12yr old child with Fibro. He has other conditions that run along with it, Allodynia, various allergys, poor bladder, constipation problems, Asthma, Tinitus, Gag-reflex (guess that's linked to the Allodynia?) could list more yet...... But he copes with it brilliantly, always trys his best to keep a smile. He would put a lot of adults (normal health!!) to shame. I seem to be the one having the difficulty...don't figure really...just hurts me so much seeing him suffer so badly at times. Wishes I could take it all away. We are in Bodmin, Cornwall....so that's me and my son xxxx Hello everyone xxxx :-)
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Re: Saying Hello

Postby helen.whittaker.125 » Tue Oct 15, 2013 10:19 pm

*waves* hi there


BB Helen xx
BB Helen x
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Re: Saying Hello

Postby FluppyPuffy » Tue Oct 15, 2013 10:26 pm

:welcome: to our little sanctuary Leigh :cow-wave: :cow-wave:

With you starting this topic and posting on the Introduce Yourself thread, I've removed the post on the thread to save on the confusion and chaos that comes with duplicated replies.

I'm sorry to hear your youngest has been dx'd with FM at such a tender age :blowkiss: :blowkiss: :blowkiss: :blowkiss: :blowkiss: Bless him, he sounds like an absolute star :bear-dancing: :bear-dancing: :bear-dancing:

I think I can understand why you're finding it so difficult, it due to Mum mode being permanently engaged as soon as they're born, and when we see then hurting, we just want to be able to take it all away and make them all better again. But unfortunately, due to FM playing by it's own rules that are constantly changing, it's not something that is possible to do, which goes against everything we feel we should be able to do as Mums :grouphug: :grouphug: :grouphug: :grouphug: :grouphug:

There is lots of info on here, hopefully you'll find some of it helpful. There's also lots of support and understanding, both for your son and for you. It can be difficult for someone to understand what it can like living with FM as there isn't anything that can really be likened to how it makes us feel that everyone is likely to have experienced, which can give rise to all sorts of frustrations and worries for all involved. And knowing what my offspring was like at the same age as your son, they're not always forthcoming with explaining how they are feeling, which also adds to these frustrations and worries. With what is on here that others have experienced, hopefully there will be some bits that can help with these worries and frustrations and make things a little easier for both of you and other family members that they ripple out to and affect :cow-wave: :cow-wave: :cow-wave: :cow-wave:


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Re: Saying Hello

Postby denys » Tue Oct 15, 2013 10:37 pm

Hi Leigh and son, what a brave boy as Flup has said a little star :-D :-D :-D :-D while your son probably wouldnt get anything out of the site maybe you can ask questions on his behalf and we can try our best to help if we can :cow-wave: :cow-wave:
Denys

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Re: Saying Hello

Postby fibro-lu » Wed Oct 16, 2013 10:20 am

hi and welcome Leigh and son

in addition
when I was a kiddie my "bones" often ached and they said it was "growing pains" and I would grow out of it (didn't happen yet)
as a teen it was the hormones
then when I asked my best friend if she too could feel the weather change she gave me :?: :?: :?: because she never heard anything like that and I was :?: :?: :?: because it was new to her (not to my mum or her mum)
whenever I had a cold/flu it really hit me hard with lots of pain, but because this was normal for me I never thought to question it
I didn't like cold weather or getting cold because my whole body would start aching etc
when I was young there was no dx, no name, no symptoms, no umbrella

keeping in mind that there is no cure etc I think I am glad there was no dx
I might have ended up as being the "sickly" kid, the "poor" one with the "dreadful" condition etc
I might have also ended up thinking of myself as this "sickly" kid and would have restricted myself (through my own thinking of me)
and would have been much worse off much earlier in life (instead of pushing on til I broke down)
(on the other side, with pacing and therapy etc I might have managed better, would have done things different and might not have been as bad as I am now, who knows)

I think the point I like to make is the psychological aspect
(often FMS and depression are linked but)
my formost point is how to explain to your son that all these conditions etc don't make him any different (in achieving stuff in life etc) to any other kid (so he doesn't give up on himself mentally)
don't know if I make sense

sorrry, went on a bit
all the best :cow-wave: Lu
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Re: Saying Hello

Postby *Lisa* » Wed Oct 16, 2013 3:13 pm

Hi and welcome :-)

I have fibromyalgia but so does my daughter. She was diagnosed at 16 having symptoms for a year before diagnoses.

Its very hard to see such youngsters living with a chronic condition as there is nothing we can do to help to take there pain away :(

With being a sufferer myself i do have the knowledge and experience to guide my daughter and get her help. Saying that its a struggle to get her to recieve treatments as she just dont want anyone touching her and asking so many questions. She gets very angry and frustrated.

Trying to teach a teenager to pace and look after themselves is hard as there young minded and want and need to be like there friends and so she pushes past her limits and becomes bedbound with pain and exhaustion.

Its hard work! im always having to be one step ahead of her and watch everything she does to step in when i feel she over doing things.

Its good to hear he is coping. :-D
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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