Hi, just introducing myself - Fibromyalgia Acti...

Fibromyalgia Action UK

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Hi, just introducing myself

Rachel174 profile image
41 Replies

Hi,

Well i have finally, sort of, accepted my diagnosis of Fibromyalgia. After a particularly bad bout I have realised I have to accept this a long term condition. I like to enjoy life and don't like feeling labelled. I have felt very alone with my symptoms and my GP has suggested contacted others people with the same condition. So, I would like to say a big hello to you all :)

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Rachel174 profile image
Rachel174
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41 Replies
BlueMermaid3 profile image
BlueMermaid3

Hi Rachel

Welcome to our lovely forum :) You will find everyone very helpful kind and compassionate. We try our best to support each other as best we can.

You have really managed a great hurdle in accepting your condition. I can honestly say that after having Fibro over 30 years I still haven't fully accepted it. Not for the want of trying.

We are a friendly lively bunch and lots of people will soon be welcoming you too.

The forum does tend to be slightly more quiet over the weekends but there is always someone around to chat to around the clock.

Best wishes

Lu x

Rachel174 profile image
Rachel174 in reply to BlueMermaid3

Hi Lu,

Thankyou for your reply :) It is great to know there are people out there who know how it feels. I'm glad you have said you still don't fully accept it because I don't think I ever will. I'm always looking for another cause. ....hoping the docs have missed something ..... worth a try :D

Rachel x

BlueMermaid3 profile image
BlueMermaid3 in reply to Rachel174

I know what you mean. Me too. Always hoping they will find it is something that can be cured instead of Fibro.

Look forward to chatting to you more :)

Take care

Lu x

Keeleybee profile image
Keeleybee

Hi and welcome good advise from gp always good to talk to others who suffer the same and understand where your coming from 😊

Everyone is lovely expecially lu who has already replied to you. lu was the first person who responded to me on here and I was so greatful x

Hugs keeley x

Rachel174 profile image
Rachel174 in reply to Keeleybee

Thanks Keeley. I feel relieved that I can talk to people who understand. My friends and family find it hard to understand as there is nothing visually wrong to see. My GP is great and had been really helpful. ...I'm a lucky one!

Thanks again :D

Rachel x

BlueMermaid3 profile image
BlueMermaid3 in reply to Keeleybee

Hi Keeley

I've had a really rotten day and that lovely comment you wrote above made everything feel a bit better. Thank you my lovely. I hope you're doing ok. Haven't seen much of you around lately.

Hugs Lu xxx

lou1063 profile image
lou1063 in reply to BlueMermaid3

Comment from Keeley well deserved, you helped me in the past and probably didn't realise how much xxx

BlueMermaid3 profile image
BlueMermaid3 in reply to lou1063

Oh Lou. Thank you so much. I'm pretty sure I don't deserve all this praise, but I can't tell you how lovely it is to hear.

You're right, I had no idea I helped you. But then you probably don't realise how much you have helped others too.

Take care my friend xxx

Shadows-walker profile image
Shadows-walker

Hi I was exactly the same took me 3 years and to find this site and to read and learn from the other wise souls here , ask your go to send you on a pain and fatigue clinic ,go along with an open mind , they teach you understanding, pacing , what your pain Meds do and how the body reacts , ask for a occupational assessment from social services self refer adult section , they will help with aids for your home , always talk to assessors about your really bad days don't make mistake I did , learn from everyone on here ,it's also a aid , I did not understand and was to proud , most here were fit ,energetic and feel there lives were stolen , look up the spoon theory on line , try not to stress and learn to except ,is the best way to go forward

Hugs

Chris 😊

Rachel174 profile image
Rachel174 in reply to Shadows-walker

Thanks Chris! I will look up your suggestions. That's exactly how I feel, that my life is being taken away and everyday I desperately try to claw it back! Exhausting isn't the word :) I still work full time and love my job. My fear is I'll lose that too and I've worked hard to get where I am.

I've had such a lovely welcome and it's definitely put a smile on my face!

Thankyou and a return hug to you! Rachel x

Shadows-walker profile image
Shadows-walker in reply to Rachel174

Your welcome 😀x

Volatileval profile image
Volatileval

Yep you have found a fabulous site - lots of laughter, lots of good suggestions, and people that know what you're going through. Never worry if you feel like a moan, someone will soon get back to you, got a problem that isn't Fibro base, your friends on here will do their best to help or point you in the right direction.

Gentle hugs,

Val

Rachel174 profile image
Rachel174 in reply to Volatileval

Thanks Val! Gentle hugs are good. Normal ones are torturous :( Laughter is such a good medicine :) :)

Rachel x

Regnofibro1 profile image
Regnofibro1

Hi nice to meet you and welcome to the site.! Just to let you the mother site has some great information and so do the people here.

Now I am not crazy even though you may think so at first. I am really not😳😳no matter what you may hear😜😜! I just love to joke and keep the mood up!

Actually I have met many wonderful people here. The administration is wonderful! They too are dealing with a lot of health issues and still manage the site! I don't see how!

I am from over the pond! I live in Texas so I am just me! I try to help where I can . Hugs

Rachel174 profile image
Rachel174 in reply to Regnofibro1

Hi! I'm fine with crazy. I would much rather laugh than cry 😃😃. I signed up to this site this afternoon and then couldn't remember what the site was called......have to laugh😆!

I'm from Manchester UK so smile from here!

Rachel x

Regnofibro1 profile image
Regnofibro1 in reply to Rachel174

Well that's something we all do! We call brain fog or fibro fog or I forgot what was going to say😳😳😳! Oh well I am one of several who have had fibro before there was a name of fibro... Not sure that made sense but oh well! I have had in they think since birth ( injury) . The first time I was diagnosed I was 7 😱😱😱!! Humm I seemed to have gotten side tracked..oh yes lu is I know has had it for yyyeeeaarrsss!! I know we both try to help! Lu is very smart and caring soul. Then there is foggy who when she pops on will welcome you! You have already met Chris (shadow) ! Actually I do believe that I will let them show themselves! They are great! I huh oh boy Humm forgive me please we had a big drop in temp here last night and I don't think I am all here! Nope pretty sure something is not all here😱😱😱😳😳😳! That's it between pain meds because really someone either put ants or bees in my bed last night! I think maybe I missed a few I will have to look in a bit😷! I live with my youngest daughter and her hubby along with 4 wonderful boys. Oldest 14 a bit shy who had a very ruff life before coming to live with her hubby. 7 he is our miracle baby he was born 3 months premature and has a speech problem (very smart) he too is a bit shy. 6 he is our charmer with ADHD and also 2 months premature. ( my daughter seems to think she doesn't have to carry them the whole time because they are perfect the way they are) no seriously I know she would rather carry full term!! Bad joke because she went through a very bad time actually we all did. Then there is 5 he has some sensory issues is how hubby puts it. I simply treat him as one of the boys and he has responded as one of the boys! Hubby is amazed at his progress since he has been with me and my daughter. He is a great little boy! That's me and my life !! Enjoy your day !!

Rachel174 profile image
Rachel174 in reply to Regnofibro1

Ah so that's what fibro fog is! It's so annoying because some days I can't even speak properly! Wow, you must be busy with your family :) I have one son who is 11. He was born 2.5 months prem, as I developed pre eclampsia and haemorrhaged. I was advised to not have any more so I didn't. Just as well as I don't think I'd have the energy!! I have already 'met' so many lovely people on here. I'm smiling and relaxed for the first time in ages 😃😃😃

I live with my husband, son and our 3 mad cats! They like to try and dive bomb under my feet and send me flying....not helpful 😆😆😆

You've had FM since you were 7? How have you coped? Mine developed about 5 years ago but feels like longer!

Regnofibro1 profile image
Regnofibro1 in reply to Rachel174

One day at a time! Seriously that's how I do it! I was a chef for 20+years . Till my body decided I needed to stop. I argued with it another few years but decided that I better slow down before I couldn't get back up. Lol some days I feel like I work harder now ( I don't it just feels that way)! The best two gifts I have ever received a memory foam mattress and a iPhone!!

Rachel174 profile image
Rachel174 in reply to Regnofibro1

Good on you! Must have been hard all those years. My best possession is my iPad. I do alsorts from it. hurts my hand holding it though!

Regnofibro1 profile image
Regnofibro1 in reply to Rachel174

They have little stands for them . Believe you me I use mine all the time!! Oh I also forgot to let you know.... Humm pixie is one of the sweetest person you will ever meet shh don't let her know I told you shh also Ken is super smart ..badger takes wonderful pictures.. Gins coffee chats I look forward to.. Oh I could go on for days.. I took a little nap in a electric fence so I am now electricfied!! Oh yea shh this is a sneak attack I keep forgetting that humm

Njh1975 profile image
Njh1975 in reply to Rachel174

Hi Rachel I've just latched onto your comment about where you live, I too live in Manchester north - Middleton to be precise. Just wondered where you are getting treatment? This site is amazing and although I don't post on it a lot it has helped me immensely. Take care and pace yourself

Big hugs

Nicola

X

Rachel174 profile image
Rachel174 in reply to Njh1975

Hi Nicola, I live in South Manchester. I go to Wythenshawe Hospital pain clinic and Washway road GPs. They have both been really good. I have found this site great already. It's daft because there is a FM support group where I live but I have never been. By the time I get home I haven't got the energy to attend the meeting. I really should make the effort 😀

Anyway thanks for getting in touch. Hope you're doing ok.

Big hug back to you xx

littleeffie profile image
littleeffie

Hi and well done for joining in.

I don't like labels in fact if I had a label for everything the docs keep finding I have I would look like a walking post it note !

I find people find it difficult to realize what I feel and how grim it can be because they see me smiling or joking about but its the way I deal with it and as kids have painful disabilities aswell I like to show them you can live with it all and not just exist.Apart from that I am crazy and far far too blonde but hek that was my lucky break when I was born the crazy bit the blonde was an option I took up when much younger and feel happy with.

Have fun and pace yourself .

Effie x

Rachel174 profile image
Rachel174 in reply to littleeffie

Hi Effie, I love post it notes! My colleagues laugh because I put them everywhere.....just so I can function in my job. Labels never seem to be positive. I don't want to be given a title and then just give up trying to find a way out of this horrible thing!

I am a joker too! I find humour gets me through most stuff but when I'm alone I have a little down time, until the next morning and then get up and start again 😄

So you're crazy and blonde? I have no excuse...maybe it's my curly hair :)

Regnofibro1 profile image
Regnofibro1 in reply to Rachel174

Well I have curls and two blonde daughters so that's my reason!! The only labels I like are the ones I work my b*** off to achieve! Mom, chef, mammy momma things like that! So in a way Effie I is with chew!! Doctors keep putting labels on I keep proving to them they don't matter! I have found though doctors can get cranky when you show them what they think a label means is wrong!!!

littleeffie profile image
littleeffie

If you don't allow yourself some down times you won't know when you've picked yourself back up 8 )

As for finding the way out of this awful thing I have a great map that takes you round the bend but the fibro fog muddled the rest so its round the bend or nowhere for me at the moment he he.

Regnofibro1 profile image
Regnofibro1 in reply to littleeffie

I thought I knew you!! Eeek around the bend is that where we are! Wow

Regnofibro1 profile image
Regnofibro1 in reply to Regnofibro1

Oh yes note to self remember dyslexia tells you it up when it's down or right when it's left! Ha ha now figure out where you are!

littleeffie profile image
littleeffie in reply to Regnofibro1

Yep erm no erm yep aarrgh the fog gets caught round the bend I think that's where we are but I'll check the map to be sure.Well I would if I could remember where I put it .

Regnofibro1 profile image
Regnofibro1 in reply to littleeffie

Gets on glasses well I thought I had my glasses.. Humm while we are looking for map if you see my glasses will you please hand them to me? I need them to Humm why are we looking around again??

Rachel174 profile image
Rachel174

I need a map but I'd forget where I'm going, why I'm going there and where I've just come from 😂😂😂

Hi and welcome to our fabulous family Rachel, you have certainly come to the right place for friendship, support and great advice. There will always be one of us here to chat to, anytime....

Best wishes and all the very best to you :) xxx

Rachel174 profile image
Rachel174 in reply to

Thanks ryanbone. I certainly feel supported already :)

TheAuthor profile image
TheAuthor

Hi Rachel174

Welcome to the forum and it is wonderful to make your acquaintance. I sincerely hope that you are feeling as well as you possibly can be today? I gneuinely hope that you find the forum useful, informative and loads of fun!

I have pasted you a link below to our mother site, Fibromyalgia Action UK which hosts loads of useful Fibro information: fmauk.org/

I want to genuinely and sincerely wish you all the best of luck with your Fibro.

All my hopes and dreams for you

Ken

Regnofibro1 profile image
Regnofibro1 in reply to TheAuthor

Hi ya Ken !! How are you tonight? How's Julie doing? I am sending hugs to you both!!

TheAuthor profile image
TheAuthor in reply to Regnofibro1

Hi Reg, we are not too bad thanks.. I am a little tired as had really busy day. Hopefully I will sleep later. Hope that you are well my friend?

Regnofibro1 profile image
Regnofibro1 in reply to TheAuthor

Just flare! 30 degrees drop in temperature causes fibro to speak its mind! Once the temperature settles it will get better! Just right now hot during the day and pretty cool at night fibro doesn't like it.

Rachel174 profile image
Rachel174 in reply to TheAuthor

Thank-you Ken. I am slowly finding my way round the site. I will have a look at the other site as I really need to find out all about this condition. I've been diagnosed with it for quite a while but just ignored it and put up with all the symptoms!

Rachel

1954jac profile image
1954jac

Morning Rachel welcome to our chat room I've got osteoarthritis and few other problems you will love this site it always helps when you know you aren't on your own xx

Rachel174 profile image
Rachel174

Hi, I am loving it already :) Hope you're having a good day x

Jaqs2017 profile image
Jaqs2017

Hello Rachel174, welcome to the group xx

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