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The UKFibromyalgia Forums • View topic - Introducing me any my new website



Introducing me any my new website

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

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Introducing me any my new website

Postby anonymouse » Tue Apr 24, 2012 12:17 pm

Hi everyone I just wanted to say hello and introduce myself. I have been a forum member for some time now but I have not managed to be as active as I would like to be. I am 28 and male and live in the UK, I would like to keep myself anonymous so I can post more freely about my medical conditions to benefit others without the possibility of being recognised and linked to medical problems, some of which are quite private, but rest assured I am real.

I was diagnosed with Fibromyalgia in 2007 but I think I have had it for most of my life but prior to diagnosis I didn't know quite what was wrong. I suffer from chronic pain and chronic insomnia as I'm sure most people do on here. I am virtually bedridden and don't often get out of bed however it is possible with medication to sit with visitors and attend appointments etc. I have been through the process of claiming ESA and DLA and have plenty of experience and research to offer, some of which comes from research into the aspects of law behind these benefits as that can often differ with the custom and practice that we are all subject to. I find it easier to navigate and digest legislation as I was a Police Officer until a few years ago. I also have a knowledge of pain conditions and medications and have been on quite a list like, pregabalin, duloxetine, amitryptilyne, benzodiazepines, tramadol, MST and Oramporph so I can help answer people's questions with regards to these subjects.

Due to my mobility I have now invested in a nice new iPad so I can spend most of my time on the Internet with ease now from bed rather than having to be well enough to sit at a computer. As such I have decided to create a my own website which is www.myfibromyalgia.co.uk and I am slowly adding a lot of content for people diagnosed with Fibromyalgia, their friends, family and people researching the condition. It helps me give back some of my time and experience to benefit other people and helps me keep positive about life. My site in the early stages so I haven't done any design work on it yet and I am open to, and encourage, comments and suggestions about the site. I hope it's ok to talk about my website on here so moderators please be kind to me if you object and I'm more than happy to comply with any rules but the main purpose of the site is for people with fibromyalgia to access helpfull information. I am also on twitter @my_fibromyalgia

I often struggle to accept my day to day management of my condition and it helps to know I can help other people with the same condition so please feel free to get in touch, look at the site and give me a shout if you have any questions.

Thanks everyone! :-)
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Re: Introducing me any my new website

Postby shazq » Tue Apr 24, 2012 12:49 pm

:welcome: to the forum anonymouse :wave:
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: Introducing me any my new website

Postby denys » Tue Apr 24, 2012 3:05 pm

Hi Anonymouse and :welcome: to the forum, if you add a forum to your site it will have to be removed but at present its ok :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: Introducing me any my new website

Postby anonymouse » Tue Apr 24, 2012 3:12 pm

Hi shazq and thanks for the advice denys, if I do add a forum it will be a while off and I will take my links off posts as I will abide by the rules. I just hope it helps people because ive been working so hard on it lol
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Re: Introducing me any my new website

Postby denys » Tue Apr 24, 2012 3:16 pm

OK dont post links to it on any of the other boards as that could be construed as spamming and no poaching of members and you will be fine :lol: :lol: :lol:
Denys

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Re: Introducing me any my new website

Postby diane1 » Tue Apr 24, 2012 3:57 pm

Hi anonymouse :wave:

Just had a quick look at your website and it seems that you can put comments on but need to be logged in to do so. There doesnt however seem to be anywhere to enrol. How do you do this.

Its great to have places to find information especially from those who have experienced fibro.

I too have a good knowledge of the benefits system and related law having been one of those decision makers !

I would like to say the piece on ESA is good but it might put some people into panic as you have said that ESA C will only be paid for 365 days. Whilst this is true in parts it only relates to ESA C customers who are in the WRAG. If you are in the support group your ESA is paid as long as you are in that group.

I hope you dont mind me mentioning it but as a quick look it cause some to panic.

I'm going to get a coffee later and have a good read and hopefully will pick up a few tips myself as i've recently changed medication.

Good Luck.
:goodluck2:
Does an elephant with fibro fog ever forget ?
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Re: Introducing me any my new website

Postby anonymouse » Tue Apr 24, 2012 4:37 pm

Hi Diane,

Thank you very much for looking at the site and providing feedback. Fo ease I have decided to use Wordpress to create my site so I can edit and post from my iPad rather than start from scratch with a design. The log in and comment functions your refer to are for Wordpress account holders but I can not seem to remove this function or the top bar as your the second person who has had this problem today. I am desperately trying to solve this problem without having to design the site separately but I am not having much luck (anyone on here with Wordpress skills, HELP) lol

I am aware of the 365 day cap being only in relation to the WRAG and I'm sorry I have not made that clear, your spot on and I don't want to scare people so I will make that change my next job.

I'm so glad that you may find the site usefull, I need to write more about medication as I've only done two so far however I've just added some bits on pain conditions under symptoms which is also one of the work in progress pages. Hopefully I will get the comment function sorted out soon so you can contribute but in the meantime let me know if you need any specific advice on a topic I might know about. Having a former decision maker in my contacts would be very very useful so it would be great if you could keep in touch and maybe contribute more in future If you wanted to. I'm on @my_fibromyalgia on twitter if your on it.

Thanks again
Anonymouse
Xxxx
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Re: Introducing me any my new website

Postby diane1 » Tue Apr 24, 2012 4:53 pm

Hi

I havent managed to get on twitter yet, i'm not a facebooker either. It would be good to keep in touch you can send private messages on here to individuals if you go on your home page and look for the member. I'm "diane1".

I'm ofay with ESA, JSA & DLA i've got around !!!

I've only just retired though only 47 anf have had fibro since 2002 so have tried most medications got most associated illnesses you could say i've "been there bought the tshirt"

Looking forward to reading your site later i'll send you some feedback on here.

Di
Does an elephant with fibro fog ever forget ?
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Re: Introducing me any my new website

Postby anonymouse » Tue Apr 24, 2012 5:20 pm

Hi folks, just an update: you "should" all now be able to make comments on the site using an email address :-) let me know how it goes!
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Re: Introducing me any my new website

Postby diane1 » Tue Apr 24, 2012 6:50 pm

It works

Just sent you a testing message.

Good Luck

Diane

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Does an elephant with fibro fog ever forget ?
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Re: Introducing me any my new website

Postby anonymouse » Tue Apr 24, 2012 7:07 pm

Got it and replied, thanks Diane!
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