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Fibromyalgia Action UK

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Please join by showing support of this Blog Bomb for International Fibro Awareness Day today !

Mdaisy profile image
21 Replies

Fibromyalgia Syndrome (Fibro or FM) affects at least 1-in-50 people or around 2 million people in the UK alone. Despite this, awareness of Fibromyalgia particularly in the UK remains very low. Many people with Fibro struggle to get diagnosed and lack access to effective treatments, despite there being a huge amount of research on the condition

Please copy & paste either of the italics below then personalise the information where you see the X to comment

I have been living for Fibro for Xyears and I experience Xsymptoms. Fibro impacts on my life as I cannot do the following Xand I support International Fibro Awareness day 12th May 2014. We need more awareness so we can receive adequate treatments from Healthcare Professionals & also we need understanding from the general public as a whole #May12BlogBomb

OR

I have been living for Fibro for many years and I experience a whole range of debilitating symptoms. Fibro impacts on my life as I cannot easily manage small things health people take for granted and I support International Fibro Awareness day 12th May 2014. We need more awareness so we can receive adequate treatments from Healthcare Professionals & also we need understanding from the general public as a whole #May12BlogBomb

Or you can add your own comment of support too :) I'll start ! :)

Thank You all for the support over the last year and welcome to all new members to the FibroAction community

#letschangethat lack of awareness we've all experienced at some point either before or after diagnosis or both!

Emma :)

FibroAction Administrator

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Mdaisy profile image
Mdaisy
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21 Replies
Mdaisy profile image
Mdaisy

I have been living for Fibro for 8 years and I experience chronic pain, fatigue, fainting, dysautonomia, headaches and many more symptoms. Fibro impacts on my life as I cannot do the following simple tasks like having a bath during a flare and I support International Fibro Awareness day 12th May 2014. We need more awareness so we can receive adequate treatments from Healthcare Professionals & also we need understanding from the general public as a whole #May12BlogBomb

Shazzzy profile image
Shazzzy in reply toMdaisy

For the last 15 years I have endured chronic pain, debilitating migraines, weakened muscles, chronic fatigue, nausea and mental confusion these are just some of the fibromyalgia symptoms I deal with on a daily basis. The part I find hardest to deal with is the isolation, pain and exhaustion prevents me from joining in with the rest of the world on a regular basis. That is why fibroaction is such an important part of my life, I can talk to the world from my bed, just as I am doing right now to you, to say I support International Fibro

Awareness day and look forward to improvements in treatment and public understanding in the future.#May12BlogBomb

Fibrofoggiest profile image
Fibrofoggiest

I have been living with Fibro for well over 30 years - I had thought I was going mad,surely young people didn't all feel like I did but fibrositis, as it was known at that time, was even less understood back then.

I eventually got a proper diagnosis about nine years ago which suddenly made sense of everything I had been through over the years. I suffer a lot with chronic intractable pain, chronic migraines, muscles spasms, IBS, irritable bladder, fatigue and the ever present memory problems.

Fibro impacts on every aspect of my life making 'normal life' an almost an unachievable goal.

I fully support International Fibro Awareness day 12th May 2014 in the hope that we raise the understanding and treatment methods from healthcare professionals for Fibro and that we can also raise public awareness about this condition in general.

#May12BlogBomb

pottyness profile image
pottyness in reply toFibrofoggiest

Wow fibrogoggiest i didnt realise fibrositis was eventually diagnosed as fibromyalgia. my granny used to say 'dont worry its just my fibrositis playing up' i never realised she must have been the first in the family to have been diagnosed with it. before then there were a number of 'creaking gates' that were sniggered about because they lay in bed and did nothing... poor soles we should be at least grateful that there is a name for our condition now and that we can hold our heads up [well metaphorically at least] and not receive quite as much ridicule as our ancestors would have done.

Fibrofoggiest profile image
Fibrofoggiest in reply topottyness

Hi there, so many people have said they never realised the link and I never would, had my brilliant GP not picked up on me muttering about fibrositis and it was like a lightbulb moment - all the ghastly treatments I'd been given - traction in particular - I can certainly understand why they used the rack as torture.

I think our predecessors just thought it was something you "got" with ageing, tho., having started my journey in my teens, it certainly isn't a problem with getting older.

Wishing you well :-)

Foggy x

TheAuthor profile image
TheAuthor

I have been living for Fibro for less that one year and I experience chronic pain, fatigue, migraines, nausea, and memory issues. Fibro impacts on my life as I cannot do the following, I cannot walk without the aid of a tri-walker, I cannot climb stairs, I cannot make a cup of tea without burning myself and I support International Fibro Awareness day 12th May 2014. We need more awareness so we can receive adequate treatments from Healthcare Professionals & also we need understanding from the general public as a whole #May12BlogBomb

Ginsing profile image
Ginsing

I have been living for Fibro for well over 10years and I experience a whole range of debilitating symptoms. Fibro impacts on my life as I cannot easily manage small things health people take for granted and I support International Fibro Awareness day 12th May 2014. We need more awareness so we can receive adequate treatments from Healthcare Professionals & also we need understanding from the general public as a whole #May12BlogBomb

We need to make people aware of our Fibro and what the reality is. We are ordinary people who have come together to SHOUT listen to our needs, take our hand and walk with us for a day to learn about the reality of pain!

I am Gins I have Fibro help me to help others with Fibro #May12thBlogBomb

lynzard profile image
lynzard

I have been living for Fibro for many years and I experience a whole range of debilitating symptoms. Fibro impacts on my life as I cannot easily manage small things health people take for granted and I support International Fibro Awareness day 12th May 2014. We need more awareness so we can receive adequate treatments from Healthcare Professionals & also we need understanding from the general public as a whole #May12BlogBomb

I would like to say thanks for the advice and support this group has given me, it's great to know you are all out there.

Lucyhobbit profile image
Lucyhobbit

I have been living for Fibro for many years and I experience a whole range of debilitating symptoms. Fibro impacts on my life as I cannot easily manage small things health people take for granted and I support International Fibro Awareness day 12th May 2014. We need more awareness so we can receive adequate treatments from Healthcare Professionals & also we need understanding from the general public as a whole #May12BlogBomb

A larger description of how fibro affects me personally can be found here:

lucyblossomcrafts.co.uk/blo...

And anyone is welcome to share their stories there too.

I have been suffering from Firbo for 25 + years. I am one of the lucky ones in that my symptoms were mostly mild.

It still meant that I was constantly at the doctors and then 3yrs ago I was suddenly hit with extreme pain, although the pain has gradually eased it is still a constant part of my life that never leaves after many tests I was finally diagnosed with fibro.

It has changed my life from being someone who was always on the go.working as a cleaner and walking as a hobby.To someone who struggles to walk more than three steps and is looking for a second hand wheel chair,

fibro fog means that I have problems with my memory recalling the simplist of words. conversations can be a no go some days.as I cannot remember words understand what is being said,

and slur my words use the wrong word

These are just some of many symptoms and probably affect me most#May12BlogBomb

I have been living with dislocations (HMS) and chronic pain since I was 19 (undiagnosed fibro) until last year.

I can no longer run, skip or jump anywhere......... or go out dancing to destress myself which was my way of controlling the anxiety and depression that came along with the pain.

I am also exceptionally hyper-sensitive and I didn't realise that I was suffering until I researched Fibromyalgia 4 years ago, until then I believed that my super hearing, smell, taste and touch senses were normal and the same for my responses to pain. I thought that when a friend stubbed their toe they felt the pain in the way I would................ now I know different! :) :) :)

Of course!! you will all know that the pain was all in my head :P

Caused by Depression :o

And Anxiety :o

Relaxation exercises that I post are so that I can help others to reduce their stress.

I use a wheelchair, can't stay on my feet too long because my legs and back cannot hold me up for long anymore. I can no longer enjoy life without the help from someone for something or other and spend a lot of time in bed talking to you guys here.................

................... I have no friends left that call round to see me :( I needed to cut out all sources of stress........

.............. sadly a lot of people I knew had to go :(

Please check my profile for a fuller picture of me :D

I support International Fibro Awareness day 12th May 2014 and today I try to recruit members for 'FibroFlutters' a new support group in and for Sunderland, Tyne & Wear. It is in association with the local MIND centre who know it's not all in my head! :D

We need more awareness so we can receive adequate treatments from Healthcare Professionals & also we need understanding from the general public as a whole #May12BlogBomb

:) xxxsianxxx :)

chellshock profile image
chellshock

I have been living for Fibro for just over 1 year and I experience a whole range of debilitating symptoms. Fibro impacts on my life as I cannot easily manage small things health people take for granted and I support International Fibro Awareness day 12th May 2014. We need more awareness so we can receive adequate treatments from Healthcare Professionals & also we need understanding from the general public as a whole #May12BlogBomb

chellshock profile image
chellshock

Can I put this on my FB page?

Lruk profile image
Lruk

I have been living for Fibro for many years and I experience a whole range of debilitating symptoms. Fibro impacts on my life as I cannot easily manage small things health people take for granted and I support International Fibro Awareness day 12th May 2014. We need more awareness so we can receive adequate treatments from Healthcare Professionals & also we need understanding from the general public as a whole #May12BlogBomb

Jayne32 profile image
Jayne32

I have been living for Fibro forover a year and I experience a whole range of debilitating symptoms. Fibro impacts on my life as I cannot easily manage small things health people take for granted and I support International Fibro Awareness day 12th May 2014. We need more awareness so we can receive adequate treatments from Healthcare Professionals & also we need understanding from the general public as a whole #May12BlogBomb

lilian68 profile image
lilian68

i have been living with fibro for six years it has greatlty changed my life. I experience a whole range of debilitating symptoms. Fibro impacts on my life as I cannot easily manage small things health people take for granted and I support International Fibro Awareness day 12th May 2014. We need more awareness so we can receive adequate treatments from Healthcare Professionals & also we need understanding from the general public as a whole

#May12BlogBomb

sue32 profile image
sue32

I have been living for Fibro for many years and I experience a whole range of debilitating symptoms. Fibro impacts on my life as I cannot easily manage small things health people take for granted and I support International Fibro Awareness day 12th May 2014. We need more awareness so we can receive adequate treatments from Healthcare Professionals & also we need understanding from the general public as a whole #May12BlogBomb

jayjay57 profile image
jayjay57

Hi only just seen this as I have been really ill & not on my computer for a few days

I have been living for Fibro for many years and I experience a whole range of debilitating symptoms. Fibro impacts on my life as I cannot easily manage small things health people take for granted and I support International Fibro Awareness day 12th May 2014. We need more awareness so we can receive adequate treatments from Healthcare Professionals & also we need understanding from the general public as a whole #May12BlogBomb

sweetdreams1234 profile image
sweetdreams1234

I have lived for fibro for the last 4-6mtjs and I support fibro awareness day May 12th 2014

I am so greatful for this site and the support from all in this debilitating syndrome Chronic pain and headaches weakness and repetitive explanations to DTS about muscle weakness and all the several times I could barely get sleep at all like 26hrs wide awake with such chronic pain nervousness in my rib cage area and these are just to mention a few .

Thank you all for your support and comforting and I hope you all have a day were you feel the best you possibly can.

Take care of you.

Barb.

Mdaisy profile image
Mdaisy

Hello All,

Thank You to all of you that took part in this Blog Bomb, I noticed there was an increased amount of awareness out there this year and your contributions were a big help.

The Thunderclap went ahead as planned with a see of tweets and I hope we can use Thunderclap again.

We will be heard if we continue to work together! :)

Emma :)

FibroAction Administrator

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