New to this: Hi, I've recently been... - My Fibro Community

My Fibro Community

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Wavelength profile image
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Hi, I've recently been diagnosed with Fibromyalgia and there is no support groups in my area, exhausted myself trying to find any information. If things weren't bad enough! Feel totally alone so I'm going to try and start my own support group, any ideas how to do this would be greatly appreciated.

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Wavelength profile image
Wavelength
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shellyuk profile image
shellyuk

Facebook has lots of support groups I use these.. It help I don't after to go out too. But if you go back to your gp they should be able to give you any information on groups in your area xx

Hi, You've taken the first step by joining this website. Many women are suffering with Fibro without even realising it, so talking about your problem will enlighten them. They think they are just:

getting old,

are inadequate

have injured themselves and it will go away, eventually

have a viral infection which, " " " "

Have got Flu.......................... " " " "

You must learn to pace yourself and realise that if you over-do it on your good days, there will be some, don't despair, then you risk the chance of being flat on your back for the next 2 or 3 days 'cos you won't even be able to get out of bed! Be kind to yourself. l have been able to join a group called, "A Way With Pain", in the north of Northamptonshire, England. We meet just one evening a month, 7.00p.m. on the 1st Thursday. l will be there tonight so l'll ask for some tips for you. Hugs, Jacqui

Wavelength profile image
Wavelength in reply to

thank you & good to meet you.

Hi again, l did send a reply about tips for starting up your own group, but l think it is floating about in the hemisphere, cos it aint down on this site. l am desperate for some sleep, l've been awake all night again. l keep nodding off at the p.c. & waking up to find that l've written gobbledegook. l've previously fallen asleep standing infront of the 6ft tall bookcase....bang went my head on the shelf, l'm only 4ft 10ins, thump went my bum on the floor , mieoooooow went the cat, hooooowl went the dog, but l think the bantams slept thru it.

l promise to write it all down for you again asap AND l've got what might be some exciting info for you. ln the meantime, get soaking your feet in epsom salts, which you can buy much cheaper on the internet in bulk, split with a friend/s? (Good for constipation taken internally) You can soak your whole self in the bath with arf a cup of it. lf you are able to get in & out of the bath, that is. You need the mangnesium to counteract the calcium which has built up in your muscles and has them in its grip........which is causing the pain. Also, apple cider vinegar used neat in a poultice on kitchen roll, bound on with cling film for 20 mins at a time, repeatedly if needs be, to get relief from pain. Give it a go & let me know how you get on. Hugs, Jacqui.

Wavelength profile image
Wavelength in reply to

thanks so much for that, I look forward to hearing about the group info. I've just finished doing an editorial for the paper so hopefully that might spark some interest. I'm interested in this calcium theory as when I had blood tests my calcium levels, I'm told, are normal albeit I have also been diagnosed with osteoporosis. it's so complicated but can you fill me in with this calcium theory, many thanks

Wavelength

in reply to Wavelength

me again, David Kellym who runs the 'A Way With Pain' gruop suggested that you try to secure charity status to help with the finances , especialy if you want to be able to host speakers and demonstrators, which we did last night.

My advice is, don't be tempted to run the group from your own home. this would be ok if it were just a group of your own friends, but if you are going to advertise the group to the general public, well, there are some strange people out there & you never know what or who is going to walk thru the door, it could even be ME!

We discussed the best places to advertise and came up with: doctors' surgeries; hospital clinics; libraries; supermarkets; web sites like U-Tube, Face Book & Street Wise; community centres and schools and colleges (?) that hold evening classes.

The exciting info l promised was the demonstrator we had last night. She practises The Bowden Method. It's a bit like a physio therapist, only much more gentle and its aim is to teach the brain to look after the body. lt can only be accessed privately usually requires a set of 3 visits to sort the body out to start with at a cost of £40 per visit which lasts an hour. A check up is advised after 3mths to see if the brain is holding its course.

Apparently there is a wealth of practitioners in the south west & the north east. One heart warming story to tell you is of a lady who had been confined to a wheel chair for several years with a 'dead leg' Whilst having the treatment she gave a running commentary such as 'Ooooh, that feels strange', & ' wow, that's an unusual feeling' . For her 2nd visit she walked unaided from the car, and subsequently gave the wheelchair up completely.

l am organising a day when 4 or 5 of our group will gather at my home so that Sandra, who lives some distance away, can spend a day with us. l'm really looking forward to that day, as the pains have been quite continuous & severe of late and my sleep pattern total haywire. lt's 2.20a.m. and my head has nearly hit the keypad several times so l will away where the fairies play.

Will catch up with you again soon & by the by......l've only been using this site for a couple of weeks. Hugs, Jacqui.

Wavelength profile image
Wavelength in reply to

Thanks so much Jacqui, I'm on the hunt for a Bowden therapist, sounds marvellous. Also thanks for all the tips for running a group, very helpful. You don't happen to be in South West do you? have a good weekend

Wavelength

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