Phew I am not alone.: Hello everyone... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Phew I am not alone.

11 Replies

Hello everyone.

Until a few days ago I thought I was going mad.

I've been in one type of pain or another for years and 14 months ago had to give up work as a self employed builder. I have neuralgia and sciatica down my left side and so many other fibro symptoms

chest , jaw, knee, elbow pain, stomach problems and so on. Severe depression and anxiety.

I have not yet been officially diagnosed but have just started seeing pain management and got

some information off a leaflet they gave me to read before my first appointment.

I have cried lots since reading posts and doing a fibro survey where I scored 16/9 . It feels as a great weight has been lifted as I now know I am not alone and was not going mad. I don't expect an easy journey now but knowing I am not alone is half the battle.

So thank you very much for making this site and good luck to you all just knowing you are there has made it an easier journey to bear.

11 Replies

Hi there

I know exactly how you feel. My chronic pain and a list of other symptoms were put down to depression for years and years.

I was officially diagnosed two years ago.

I knew myself the pain was real, but I'm pretty sure a lot of doctors I saw just thought I was a hypochondriac.

As you say, getting a name for our pain is really important. I too thought I was going mad.

Welcome! It's lovely to meet you.

Good luck with the pain management team.

Many more people will be around to welcome you later. Lots of us don't sleep at night so are up very early.

They will give you lots more information.

I just wanted to say hi.

Warm regards

Lu xx

KT_Rose profile image
KT_Rose

Welcome to the Fibroaction Forum! :)

You will find lots of information, lots of support and lots of fun here on the forum.

I have found it helpful to interact with people here. I hope you find the same. :)

Mdaisy profile image
Mdaisy

Hello JGFozzy,

Welcome to the FibroAction Community!

Most of us have been there unfortunately and after asking for a second opinion the answer was Fibro which clicked into place. Given no information in 2007, I looked towards the internet and found the website for FibroAction. Here you'll find evidence based information factsheets with the information standard certificate, please see link fibroaction.org. Now I have the amazing opportunity to volunteer for them as a charity & here on the forum alongside other amazing volunteers & colleagues!

I hope you find being here informative, helpful but most of all friendly! ALL members try to work had to make the community the best it can be! :)

Might see you around the forum!

Best Wishes

Emma :)

FibroAction Administrator

Hello and welcome,I tried to say hello earlier but was invaded by our Daughter and co. After which it was nap time. :P

In a way i was lucky. Once i had a diagnosis it was realised that i had been a fibromite for approx 30yrs without it having much affect on my life.

Then when it flared up after being made redundant it only took a few months to get a diagnosis.

I had already come across fibro by accident when looking up Restless Leg Syndrome so it did not come as a shock.

when i was made redundant i lost almost all of my friends and in finding this site i also found a new group of friends. Friends that know what i mean when i say it hurts and dont take it lightly.

Someone is almost always on line when you need a chat or advice.

hope to see you around. sue x

rosewine profile image
rosewine

Hallo and welcome to the site. Glad you are finding it helps and you don't feel so isolated and alone. it is good to know that there are other people out there who understand how you feel and the pain you are in and that you aren't alone in your journey. I am sure you will learn alot of good information from the site as they are a great bunch of people.x

Julie63 profile image
Julie63

Welcome to the best Fibro forum, JGFozzy. So sorry to hear you've got fibro, but pleased you have joined this place. It almost makes it worth having fibro...coming here.... almost.... ;-) :-)

clare_hart profile image
clare_hart

Welcome JGFozzy. See, you will never have to feel alone or crazy anymore, even if some people insist you are hypochondriac since our disease is so often "invisible."

My GP is trying to be sympathetic but he just doesn't get it. I just got another pain management referral, so I am hoping for more attention as the team there never doubted I have fibro. I am going to ask the doc to check if I fit the dignosis of ME/CFS as it seems so to me. At least that might sound more official to my GP . . .

I don't know how long I had fibro but certainly a lot longer than before I was diagnosed. I'm glad you now know for yourself.

TheAuthor profile image
TheAuthor

Hi JGFozzy

Welcome to the forum and I sincerely hope that you find it useful, informative and loads of fun! I genuinely look forward to seeing you around the site.

I want to genuinely wish you all the best of luck with getting a diagnosis one way or the other.

All my hopes and dreams for you

Ken

Artyrosie profile image
Artyrosie

My consultant never understood why I was thrilled to get a diagnosis of Fibromyalgia after years of being pushed from pillar to post, being made to feel like I was imagining the pain, or worse making it up to get attention! A real illness with a real name can actually be reassuring in some ways, even though it isn't good news its SOMETHING right?

I completely understand why you have "cried lots" too! Sometimes its hard for me to come on here and read negative stories when I'm struggling to stay positive and on top of my own life. But in the end what you find here is UNDERSTANDING, and believe me that's priceless.

I wish you everything good as you begin the journey of understanding how this illness affects YOU, because its different for everybody, and what helps you to live a decent quality of life.

Willow51 profile image
Willow51

Hi JGFozzy, welcome to the forum. There's always loads of advice if needed, opinions from the people who know what Fibro is like, and some really sad stories. There's also loads of laughs, funny pictures (thanks Foggy and others!) and tales of daft things the members get up to, and support, lots of support, so something for everyone. Hugs Linda x

Njh1975 profile image
Njh1975

Hello JGFozzy

Welcome to the mad house, not been on here that long myself but can truly speak from the heart and say the support is amazing, there will always be someone to talk to any time day or night.

I've been diagnosed 5 years now but still don't always understand the pain and anguish this horrid illness can cause and why it can't be cured or treated better, I've also had 2 hip replacements and have arthritis in my spine caused by an operation to help the neuralgia in my right hip which is actually still there despite the hip being false. I am 40 this year and I am determined to enjoy my birthday bash in July come hell or high water, I will suffer for weeks probably, but do you know if you keep smiling you can make it through each and every day.

Hope you start to understand, and know you are not alone nor are you going mad.

Best wishes

Nicola

X

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