Support Groups in south London

Find a support group in your area or find out if there are others with whom you could start up a group.

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Support Groups in south London

Postby jacque » Fri Feb 02, 2007 10:43 am

Hi

Is there any support groups in South London, i have had fms for 7 yrs, & occasionally need alittle bit of support, if there isn't i would like to start one myself, i'm sure there is plenty of south londoners that could really do with it, been to the royal free, but it takes me over 1 hour to get there, i am a single parent, so getting out in the evening is hard, i have spoken to my doctor & agrees that we do need a support group in south london

keep smiling
jacque :)
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Re: Support Groups in south London

Postby janham » Sun Mar 29, 2009 3:12 pm

Hi Jacquie and all you other Fibromites,

I feel sure there must be groups in or around south London. If not I know someone who can help you through FMA UK to start a group. There is a lot of help and guidance available.

If you write to me with your email address and are happy for me to pass this to Steve Westrop who is the Regional Coordinator for the FMA UK London area, I will be happy to put you in touch with each other. If you started your own group you could choose you own time and day, as long as there is not another group too close to where you live.

The same message applies to anyone around the UK. If you want to join a group or your own, contact me I will try my best to put you in touch with the appropriate Regional Coordinator who will help you.

I should stress there is no finance involved and we do recommend you do NOT meet in your own home, but in a public place - for your own security. We also recommend you do not use your home telephone number, but a mobile number or when you are registered an 0845 tele.no. again to protect your privacy when advertising on leaflets details of meetings. Even if you are a therapist or have medical qualifications do beware of giving advice. Folk should always consult their own GP before trying new things to avoid conflict with existing medication etc. .

I have two groups running in south east Hampshire and we began meeting in a public house for lunch (no over heads or commitment). You should preferably choose one that is not too busy so that the staff are not rushing you away for the others waiting to eat.

It is extremely rewarding to start a group and to see fibromites at last able to talk one to one with someone who knows - who has been there and done that. The networking and information exchange is fantastic. I have heard all about the effects of drugs, complementary therapies etc. from my members. They even offer help to each other based on experience with benefits appeal.

Details of our first meeting in Horndean can be found on

http://fibrofollyfogs.wordpress.com.

It was laughter from beginning to end and has been ever since. They are just fun loving members - all postive thinking.

On of my regions includes Oxford and I am desperately looking for a new Group Leader in this area - any volunteers?

As I said there is a lot of help available - at the end of the tele. or email.

Also once a year all the Group Leaders from over the UK get to meet one another. This is another plus and a great opportunity to network and socialise, as well as make new friends.

Before finishing my ramblings as someone who has been researching FMS since 2003, who is writing a book about fibromyalgia with the proceeds to go to research, who provides http://fmsglobalnews,wordpress.com with news bulletins, and who has met lots of American professionals in FMS, I feel it is important to say FIBROMYALGIA PAINS ARE REAL. You are not imaging it. It IS NOT ALL IN YOUR HEDAD as they would have you believe. You are not a mad malingerer. Yes I too have fibromyalgia, CFS, IBS and other mysterious unaccountable pains, aches, feelings and itches. If you need proof - Google me - jeanne hambleton.

Altho I would not wish FMS on my worst enemy - well maybe I would on a bad day - but if only these GPs, specialists and other 'alleged' professionals could have fibromyalgia for three months, they may think differently. If only eh? We know it is not catching although they now believe it might be hereditary, but how great it would be if they could just inject those disbelievers with a dose of FMS for a trial research period to see how they coped. I know this is not a nice thought but it does make me mad when the doctors say FMS is a waste paper basket disease and it is all in our head. I could scream.... we have got one of those doctors.....

However here is hope - there is a relatively new theory following extensive brain imaging by Professor Patrick D Wood that the brains of fibromites are different to those of normals - folk without FMS. So it is now thought to be a chemical imbalance in the brain - no longer a muscle wasting disease. It is just too much of this and not enough of the other...so to speak. This is why blood tests show no markers (are negative) and x-rays and scans show nothing where it hurts. In fact most FMS diagnosis are arrived at by the process of elimination or by using the 18 Tenderpoints, of which 11 must be active (and hurt like hell) with continuous body pains for some months.

So loosely I suppose you could say it is in your head, but not as some doctors and Professors would have you believe. You are not off your trolley. If you have been diagnosed with fibromyalgia at least one person believes you - that doctor or specialists who diagnosed you - knows you have fibromyalgia. So you are sane.

If you are self diagnosed, get a referral to an FMS specialist or a good rheumatologist. Many rheumatology specialists do diagnose fibromyalgia. If you go to a support group ask the members who diagnosed them and ask for a referral to this doctor. Sorry if you know this already but there may be people who do not.

When you get mad about the lack of support from folk and doctors just remember MY F WORD IS FIBROMYALGIA....he he he... been there got the tee shirts the tote bags and the CDs....



MAY 12 WORLD FIBROMYALGIA AWARENESS DAY (WFAD) - what are you doing that day?

Sorry to ramble on as I post so infrequently, do not forget May 12 in International or World Fibgromyalgia Awareness Day. Stick a notice in your house window or the side window of your car or both, saying - My F Word is FIBROMYALGIA on May 12 - WFAD or you could write FIBRO WHAT? FIBROMYALGIA - May 12 - WFAD .

Why not send a reader's letter to the local newspaper about your FMS or start a competition among neighbours and friends to see who can make the most words of 3 letters of more out of FIBROMYALGIA. The prize - a nice jam butty - or a fair cake - something silly.

Do write if you want details of groups anywhere. I will do my best and I am happy to help.Ideally I need the town and county where you live and the nearest big towns you are able to travel to please. If you want to write to your MP and complain to him about the lack of FMS Clinics and FMS Nurses in major hospitals and lack of Govt. funding for research, ask me about this and send me your post code. You must include your postal address in your message or the MP may not reply thinking you are not a constituent living in his area. Remember he may soon need your vote. Your post code will give me the name of your MP and I will send the link - or you can look at TheyWorkForYou.com.. a great website. I would love a copy of your email to your MP....

janham1@mac.com

Thanks CAT for telling me about the concerns about FMS being all in your head. It is all a lot of tosh and twaddle. Think positive - you might have fibro fog but you are not imagining the pains. IT IS REAL.

Excuse typos - fibro fingers and fibro fog...that is my excuse...
Talk soon - Janham.
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Re: Support Groups in south London

Postby LinzWorld » Mon Mar 30, 2009 8:04 am

There are groups being set up in SOuth London right now. PM me and I'll send you the contact details I have.
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Re: Support Groups in south London

Postby fibropatsy » Mon Mar 30, 2009 3:59 pm

Hi there , My name is Patsy Baker, with Barbara along side, we run the Fibro Support Guys London, and am in the process of setting up several meetings/ groups over south London, as well as support at the Fibro Clinic at Guys Hospital. I need volunteers and am willing to talk to any one who wants to help people with Fibromyalgia, my email is <fibropatsy.guyslondon@yahoo.co.uk.>So please get in touch with me and see what we can all do as a team, its about time that there was serious awareness about this debilitating disease. I am planning a big awareness launch in JUNE, (Hopefully the !st date to be confirmed tomorrow.) The hospital is giving lots of support with the venue, fund raising and indeed publicity, and it will be a good day. There is a lot of movement in the research of fibro, and in the treatment protocols, and more happening as we speak... but there is still a lot to do to get that information out to the GPs, country wide. And more specialist fibro clinics need to be funded country wide. After all the stats say it all, 1 person in 50 has fibro, a lot undiagnosed especially in men and children, and most of us have seen a med prof. who has been less than helpful to our needs! I lived in North America for a few years and was amazed at how much fibro was recognized and treated over there, so imagine my shock to come back here to find nothing had changed over all that time I'd been away.
But I have noticed over the last year or so a change of movement, that will with a lot of support make a big difference.
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