A newbie introduction.: Hello. Glad to... - Fibromyalgia Acti...

Fibromyalgia Action UK

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A newbie introduction.

18 Replies

Hello. Glad to have found you. I'm 40 and a mother of 5. I have worked long and hard all my life, and in April I took I'll and haven't been able to work since. I've been und a rheumatologist who initially diagnosed RA (I'm on that site) and now has added Fibro to the mix in place of RA. I've read some of your posts and your symptoms match mine exactly. I take Pregabalin and amitriptalyne, along with various other pills. I'm also B12 deficient and have Pernicious Anaemia. I'm not a quitter but today relented and hired a mobility scooter to get around shopping centre. It was fun but I don't want to get dependant on it. I use 2 sticks and now a wheeler walker as I stumble and trip over nothing, and I can't stand for long so the walker comes in handy as a seat. I feel a fool using it at my age but then it is firmly on the grand and I've had less accidents from it. I've recently had an OT assessment and have had extra stuff fitted in doors. Trying to keep a balance of a normal family home and my disability aids is not easy. My family are my carers, and my youngest fetch and carry and remind me to take my pills. I didn't realise the dodgy water works and IBS were linked until I read some of your posts. I had a TVT done in 2003 as my bladder control was so bad and I blamed my twins for it! I'm seeing a Neurologist at the end of the month to see if they can pin point which part of my head is affected due to the severe headaches, loss of eye sight and pressure in head and eye. I'm on Facebook as well so if you would like to catch up and get to know what I get up to, message me. I live near Maidstone, Kent. Are there any support groups here or nearby? Take care one and all.

Angie x

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18 Replies

Hello and welcome Kentishlady, so good to have you with us! 5 children my goodness - I have 3 and that's enough lol! You will find lots of advice and information in our lovely forum, if you look at the tags on the right, you should see info on your meds etc. There are so many symptoms with Fibro, we all appear to be affected differently but also alike in some ways too. Some suffer with IBS whilst others find that their brain fog moments are the worst thing. All cases are different, but we all understand that's for sure! I suffer from Osteoarthritis, Fibro and CFS/ME, but also get migraines. I am lucky as I am very mobile, whilst others aren't. A support group is always a good idea to get to know people locally who have the same condition as yourself. Your local council or CAB should be able to tell you about local groups, unless someone here lives near you and can advise. It will be lovely getting to know you better, see you around our forum. Anything you are not sure of, or can't find, just shout and we'll be more than happy to help you. :) :)

in reply to

Hi LibbyDe, 5 children is a bit much but 2 are twins. Ages from9 (twins) and 18, 19, 21. My RA consultant confirmed FM and hinted that I could have ME/CFS or even MS. The final labelling of whatever it is will be when I see Neurologist at end of July. I have a brain scan on Monday. I am/was an information and advice coordinator for a large charity but since becoming ill I can't remember all the things that I used to know. I've only recently been able to read and absorb what is there. I still have word muddles, and can't say which word I mean which is frustrating. My GP has been great and doesn't want me to go back to work as I'm just not well enough. I feel like I'm letting them down. My mum says as I'm 3 months in then I'm half way there to ESA. I've got DLA low rate care high rate mobility but this needs reviewing as my family have to do an awful lot for me, even though I've had OT equipment fitted. I used to do these forms for people and now I need help myself. I feel robbed of me. It takes me so long to get anywhere, do anything. I've got a burning stabbing in my bum and left leg which has been there all week and it's driving me mad. My neck and shoulders hurt and I fell like an elephant is sitting on my chest. Sorry I'm going on now but when pain gets a grip it takes over your life.

Angie xx

glochessum profile image
glochessum

Hi, welcome to this very friendly group. You will get plenty of support here.

rosehip profile image
rosehip

HI and welcome i was diagnosed in march after symptons started in january xxx

roxyroo profile image
roxyroo

Hi & welcome, look forward to seeing you on here. xxx

friends4u profile image
friends4u

welcome xx

welcome lv,you should be very happy in our family,lots of lv and fluffy cuddles fm me :) xx

ziggyinhants profile image
ziggyinhants

hi angie great to meet you i am not in kent but visit when i can to visit ben mills(re the x factor)

hope you enjoy chatting as i find it really is like talking to family on here! just grab a cupper n a buisut and have a natter lol xx ziggyxx im on facebook under ronda macdonald pics of me n cats all over

in reply toziggyinhants

Oooo I like him with his gravelly voice. I'm sleepy but enjoying the posts. I will check Facebook in a mo. I do like the chatting. Angie xx

Thank you for the warm welcome. It's nice to be included. Have lost many friends since becoming poorly, like I've got the lurgy or something. Not one person has been to visit. Oh well, it's their loss not mine. I may not be able to drink or party but I can still enjoy my family and what life I do have. Hugs to all x

scrumie profile image
scrumie

Hi and welcome this is a brill site everyone so friendly and helpfull. soft hugs xx

Welcome to our little family of Fibromites, Angie.

Gentle hugs,

Love,

Carol xx

penny41 profile image
penny41

hello hunny this group is fab, in my lonely bed time which is vast I now have company and compassion ...

Welcome ...

Soft hugs xxx

Penny

getactive profile image
getactive

Hi and welcome this site is great lots of really caring people look forward to getting to know you better take care Sue x

angelhugs profile image
angelhugs

Hi kentishlady - I'm one as well, lol - in fact I don't live that far from Maidstone... small world heh!! :) There used to be a support group in Maidstone which I went to a few times but I'm not sure if it is still going!

Hope you are having a nice restful day ... I am as I overdid it yesterday so suffering for it today ... will we ever learn, tut, tut. Sending lots of soft huggles and caring thoughts, angelhugs xxx

I'm having a bad day having already been back to bed to sleep another 3 hours. My back is killing me and my head is thumping. Think I possibly overdid it too yesterday. Xx

nonamedaisy profile image
nonamedaisy

Hello Kentishlady, i am also quite new to this site, but find everyone really friendly and the advice and support you get is really great, its just nice to know your not on your own. I used to work, but have fibro and other conditions now, and i know exactly what you mean by not knowing yourself anymore. I am receiving treatment for mental health problems with a cpn., and I am trying to come to terms with grieving for the old person and trying to except the person that i am now, all very hard to come to terms with i'm afraid. so big hugs to you hope you will enjoy listening to everyone, some of them make me laugh so much, and thats not a bad thing is it. xx

boxter profile image
boxter

Hi,

I am also quite new to the site i have fibro/diabetes/under active thyroid also sacro illiea dysfunction and problems at the base of my spine.I too grieve for my old life and don't know if i can accept who i am now.There are so many things i cannot do anymore and some days feel 95 not 55.I love to come on here and see how others are coping and read their sometimes sad sometimes funny stories.I don't sleep very well and spend probably far to much time on facebook but hey i am not hurting anybody.

Carol x

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