Hello everyone!

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

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Hello everyone!

Postby SopsIsTops88 » Sat Oct 19, 2013 8:59 pm

Hi there,

I'm Sophie, I'm a bit new to this but it's great to find support online and know that other people share my pain and understand the condition.

I am still waiting for my Fibro diagnosis, my doctor said that I have it but that I need to be referred to a specialist before I can be formerly diagnosed. I've had every test under the sun, (I feel like a human guinea pig!) with all results coming back clear. I've been waiting for the specialist appointment for so long now, only 3 more weeks to go - hopefully I'll get the diagnosis and answers I need! Lets hope I can keep my sanity until then!

Anyway a bit more about my symptoms - I'm in pain everyday, I'm only 25 and sometimes it's a bit hard to cope with. My worst problem is the neck pain, it hurts so much sometimes I don't know what to do! I also get Sciatica, headaches, allergies to food and chemicals, insomnia, non refreshing sleep, brain fog... you name it I've got it!

I work full-time, sometimes over 40 hours a week and my job is really taxing, mainly because of the stress. I don't like to tell people that I'm finding it hard to cope, sometimes I just cry because of the pain and I get really frustrated with this invisible illness.

I've been on codeine for over a year, with Naproxen occasionally. And Mebeverine for IBS. But unfortunately not much helps!

Anyway, enough of my moaning... :mrgreen: I hope I get to speak to some of you soon, I'm looking forward to meeting people, learning more about other people's experiences and how they cope.

Thanks for reading!

Sophie :oops:
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Re: Hello everyone!

Postby Dj 73 » Sat Oct 19, 2013 10:21 pm

Hi Sophie :welcome:

I'm new to this too, like me you're probably glad you found this place, have a good scout round, you'll find loads of great advice and realise you're not alone :-)
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Re: Hello everyone!

Postby FluppyPuffy » Sun Oct 20, 2013 11:22 am

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

There are few on here who are waiting to find out if their problems and symptoms are due to FM, so you'll have some company whilst you're still in LimboLand :cow-wave: :cow-wave: Only 21 more sleeps until you'll hopefully be leaving there and taking up residency in FibrroVille :fingerscrossed: :fingerscrossed: :fingerscrossed:

There are quite a few members on here in your sort of age group, as well as us older ones (that's my body acknowledging it's true age, my brain thinks it's still much younger :lol: :lol: :lol: :lol: ) We all share our experiences, thoughts and findings we've come across in our journeys to FibroVille, so whilst you're counting down how long it is until your specialist appt, you could have a bit of a looky~round. With all the info and advice across the boards, there's bound to be something that proves helpful in some way, shape or form. You could also have a peek at this Linky to give you a bit of an idea about what could happen during your appt.

anything you want to know about, all you need to do is ask and we'll see how we can help you with it :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave:
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Re: Hello everyone!

Postby SopsIsTops88 » Sun Oct 20, 2013 8:54 pm

Thank you both for the lovely replies!

It's so good to know that I'm not alone and that there's so many lovely people who want to share their stories and help others with fibro.

Thank you for the link too, that has really helped. It's felt like forever that I've had to wait for my specialist appointment and I was worried at what might happen. My biggest fear is that they will not believe me or send me for more tests! If they do that I think I might go crazy! I will definitely start to write things down so that I can show the doctor how much my symptoms affect my life.


Right, I think it's time to have a delve through the forums and see what else I can find!

Thanks again and have a good evening :-D

Sophie
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Re: Hello everyone!

Postby denys » Sun Oct 20, 2013 11:45 pm

Hi Sophie and :welcome: to the forum :cow-wave: :cow-wave:
Denys

As a Public Moderator 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.
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Re: Hello everyone!

Postby sensualitykj » Mon Oct 21, 2013 9:11 am

hey Sophie I'm Kirsty, I'm also new to this forum, and am so pleased I joined, just a shame I didn't join earlier! Although I'm now 37, I was 26 when I had a car crash and I have been in pain every day since. My symptoms are the same as yours. Like you I've had so many tests and feel like a human guinea pig! The tests started shortly after the crash because I was in so much pain. At the time I was working as a mental health nurse, however after several periods of time being signed off sick by my GP, I was discharged due to ill health and I'm in the process of being retired from nursing due to ill health.

Since the crash people have said to me "well at least you are young, you have time on your side", all I can think is it means I've got more years of pain ahead! I've got worse, not better. I find it hard to cope with my now lack of social life, especially as my mum is 65 and has the social life I had before my crash. She'll happily drive to Manchester to spend the day watch X-Factor being filmed, lots of standing and sitting. On Saturday she went to the Rocky Horror Show, I was gutted as I'd love to have gone....no chance at the moment!

Good luck with the specialist appointment. I hope you get to see as great a doctor as I do. Even thought being told I have FM didn't take away any of the symptoms, it's was so nice to hear that I am actually unwell and it's not all in my head! :lol: I agree writing stuff down to bring to your appointments is really important. I always bring a pen and paper with me to write down any important points.

Yes, we are not alone! :-D
Be in the present moment. The past is a memory, the future isn't here yet. So enjoy the NOW!
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Re: Hello everyone!

Postby debsmith » Mon Oct 21, 2013 7:15 pm

Hia sophie sorry if I spelt ur name wrong I'm quite new to forum too so glad I found it!!! Its a relief to know ur not on ur own with this horrid f word!!! I work too and only 27hr,s and that's too much for me now I have got a form for PIP but doubtful ill get it the 1st time but guna give it a go as its to fall back on if + when I can't work anymore but love the job :cry: :cry: :scream-1 i had my diagnosis a few weeks ago at the painclinic after many years of banging my head against the wall + my gp,s not listning! its so frustrating isnt it if at ur appt ur consultant doesnt check you over ask he/she too! i have been under painclinic for 2+ years with a ignorant/smarmy doc! who never examined me! write everything down ur own list of things and hand it to them i had to write a letter ( complaint ) saying about my experiance there or more,s the point lack of care! someone must of kicked sum one,s butt! as i saw differant dr as i refused to see the ignorant one! she took 1 look at me and bang fibro then did full exam inc pin prick test with eyes shut,cotton wool over parts of body again eyes shut so stay positive and be upfront as u can with them after many years of pain finaly got diagnosed! then b prepared for the massive relief/anger/fear its normal the guys on here told me that chin up hunni and welcum to the club :lol: :lol: :lol: :lol: :lol: :welcome:
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Re: Hello everyone!

Postby SopsIsTops88 » Mon Oct 21, 2013 9:15 pm

sensualitykj wrote:hey Sophie I'm Kirsty, I'm also new to this forum, and am so pleased I joined, just a shame I didn't join earlier! Although I'm now 37, I was 26 when I had a car crash and I have been in pain every day since. My symptoms are the same as yours. Like you I've had so many tests and feel like a human guinea pig! The tests started shortly after the crash because I was in so much pain. At the time I was working as a mental health nurse, however after several periods of time being signed off sick by my GP, I was discharged due to ill health and I'm in the process of being retired from nursing due to ill health.

Since the crash people have said to me "well at least you are young, you have time on your side", all I can think is it means I've got more years of pain ahead! I've got worse, not better. I find it hard to cope with my now lack of social life, especially as my mum is 65 and has the social life I had before my crash. She'll happily drive to Manchester to spend the day watch X-Factor being filmed, lots of standing and sitting. On Saturday she went to the Rocky Horror Show, I was gutted as I'd love to have gone....no chance at the moment!

Good luck with the specialist appointment. I hope you get to see as great a doctor as I do. Even thought being told I have FM didn't take away any of the symptoms, it's was so nice to hear that I am actually unwell and it's not all in my head! :lol: I agree writing stuff down to bring to your appointments is really important. I always bring a pen and paper with me to write down any important points.

Yes, we are not alone! :-D



Hi Kirsty, lovely to meet you! It was so nice to come home from work and see some more people had said hello!

I'm sorry to hear about your accident, it really does sound like that's the catalyst for your symptoms. It's a shame to hear that your symptoms have gotten worse over the years - it doesn't bode well for me! I'm worried that I may have to give up work one day, I really don't want to! I'm sure you felt the same?

Thank you for the advice, I had a terrible appointment with my doctor today and I felt like he didn't take me seriously at all. Now I've just got to wait another 20 something days for the specialist appointment - I really hope they believe me and give me the answers I need!

I wish I joined earlier too! Everyone is so nice and has so much support for each other :-D

Hope your week is going well :mrgreen:

Sophie x
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Re: Hello everyone!

Postby SopsIsTops88 » Mon Oct 21, 2013 9:21 pm

debsmith wrote:Hia sophie sorry if I spelt ur name wrong I'm quite new to forum too so glad I found it!!! Its a relief to know ur not on ur own with this horrid f word!!! I work too and only 27hr,s and that's too much for me now I have got a form for PIP but doubtful ill get it the 1st time but guna give it a go as its to fall back on if + when I can't work anymore but love the job :cry: :cry: :scream-1 i had my diagnosis a few weeks ago at the painclinic after many years of banging my head against the wall + my gp,s not listning! its so frustrating isnt it if at ur appt ur consultant doesnt check you over ask he/she too! i have been under painclinic for 2+ years with a ignorant/smarmy doc! who never examined me! write everything down ur own list of things and hand it to them i had to write a letter ( complaint ) saying about my experiance there or more,s the point lack of care! someone must of kicked sum one,s butt! as i saw differant dr as i refused to see the ignorant one! she took 1 look at me and bang fibro then did full exam inc pin prick test with eyes shut,cotton wool over parts of body again eyes shut so stay positive and be upfront as u can with them after many years of pain finaly got diagnosed! then b prepared for the massive relief/anger/fear its normal the guys on here told me that chin up hunni and welcum to the club :lol: :lol: :lol: :lol: :lol: :welcome:


Hiya hun! Thank you so much for the reply, it's so nice to meet more people in the same boat!

Your situation sounds very similar to mine, I just wish the doctors would believe me - I feel like I'm going crazy! It sounds like it's taken you a really long time to get a formal diagnosis? The doctors at my surgery seem to all have the same opinion that it's made up and the pain is in my head. Did you have a similar experience?

What do you work as? I'm really worried that one day I will have to give up work, doing 40+ hours a week is really making life a struggle... but I really love my job too!

I'll have to learn all about the different benefits you can go on if you get signed off from work as I don't have a clue yet - something to think about in the future!

I wonder whether in my specialist appointment they will do similar tests? That sounds scary lol

Hope you're having a nice evening :-)

Sophie x
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Re: Hello everyone!

Postby sensualitykj » Thu Oct 24, 2013 10:03 am

Hey Sophie, thanks for your response. Yes I didn't want to give up nursing, however I just couldn't do my job. I hope you manage to keep your job. I want to use my skills as a nurse, so I've just joined the committee to help my mates set up a new chronic pain support group in Poole, Dorset. I'm hoping once it's set up I can run sessions I ran as a nurse, anxiety management etc, also I'm going to try my hand at Laughter Yoga.

Like you I have had doctors tell me the think fibro is all in my head. However the GP I have now recognises it as a condition. Hopefully with all the research that is being done, more doctors will realise it is real! I've found the specialist to be very supportive and understanding, I hope you have the same experience. I did find out that Fibro was suggested as a diagnosis a year before I was formally diagnoised, however because I'd had a car crash and because of my age, the doctor wanted to wait to make sure it wasn't anything else. However as fibro has already been suggested for you, hopefully you won't have to wait too long for a diagnosis once you've seen the specialist. Good luck.

I hope you week is going well.

Kirsty Xx :-D
Be in the present moment. The past is a memory, the future isn't here yet. So enjoy the NOW!
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