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Fibromyalgia Action UK
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Finally...

I've just come back from the hospital after being told I have Fibroyalgia. After reading the leaflet the specialist gave me now it all makes sense... but other factors were masking it.

I also have ATN (Atypical Trigeminal Neuralgia) and have been dealing with that for the last 4-5 years and now this.

Where does one start .....

10 Replies
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Hello JacquiRo

Welcome to the forum :)

It sounds as though it has taken you quite a while to be diagnosed, which is actually very common.

All of us on the forum have Fibromyalgia and many of us have additional conditions too.

My best advice to you would be to take some time (in your head) to try to come to some form of acceptance of being diagnosed with a chronic condition.

The next thing would be to try to learn how your Fibro affects you as we all suffer to very different degrees.

If you take a look at our mother site you will find lots of info about Fibro on there fmauk.org

You will find everyone on the forum kind, compassionate and happy to share their experiences with you.

Once again a very warm welcome and I hope you enjoy being part of the forum :

Wishing you much peace

Lu x

Administrator

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Thanks... today was the day of all days I didn't want to be in a hospital as it was a year ago my mother died in one so very tragically... so this on top is a bit of a bomb shell.

Your kind welcome is very much appreciated. I will look at the site you mentioned.. again thank you. x

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I'm so very sorry for the loss of your mother.

I have made some wonderful friendships here on the forum and I feel sure you will too :)

Please take care of yourself

Lu xx

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Perfect advice ❤️❤️❤️❤️

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Hello,

You might get more replies if you lock your post and you can find instructions on how to do this on the right of your screen under the pinned posts.

If you want more information about Fibro, there's always the Fibromyalgia Action UK website (a quick internet search should have it).

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Hi :)

If you want to go onto the Fibromyalgia Action website the link is in my reply above:

fmauk.org

If you click on the blue line above it will take you straight to the website.

Lu xx :)

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Hi JacquiRo

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

Please can I offer you my deepest condolences on the sad loss of your mum. It was probably an awful time for you at the hospital with it being the anniversary.

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

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Thank you so very much... it is much appreciated as only one family member remembered and this hurt me deeply. I guess they couldn't be with her when she was dying why should they remember.

I have read that depression and anxiety make this condition worse... is this true because if so then I can understand why my flare up is bad at the moment.

So much to learn and come to terms with isn't there... all I get my husband is a roll of the eyes like of something else but I try to say no actually this is the whole of it..

Oh sorry to go on... blessings to all

Thank you again Kev x

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Hi my friend

Sadly, stress and anxiety can play havoc where Fibro is concerned. NHS Choices says one of the causes of Fibro is trauma and the stress and anxiety that it brings. I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken x

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Losing your Mum must have been a terrible time for you. Unfortunately fibro. Flares, when things are worse for a while, are brought on by stress. Hence losing a loved one can amplify fibro. Most of us take a few years to be diagnosed and be were you are. My advice would be to daily visit this site, read, ask questions, lots, look in the archive and become part of the community, you already are.

Nest I would get arefeeral by gp to Pain management team, not to be confused with pain clinic which comes in later. Most hospitals offer an eight week pain management course, three hours a week. Try and see if one just for fibro pain. You learn about your pain how to Cope with it, medical , pharma and things like physio, pacing, spoon theory, Mindfulness, lifestyle changes, support groups etc. Plus I got to meet eight fibro sufferers I had never met one before, not on my own and not just in my head though nerve endings in brain play a part. From there move forward see what makes it worse or better, keep in touch with gp perhaps see if any Meds help what works for someone else doesn't necessarily work for you. Work out if still well enough to work and whT benefits you can get PiP is for those in or out of work, council tax relief, housing benefit,a subject in its own right. Build up a caring support network around you this may or may not be fAmily and friends but new friends strangers on itinerary and health professionals. Feel your way you can manage the symptoms not the illness. Don't expect your gp to have much knowledge, research things , manage your illness and life does go on! You learn a lot about yourself and those around you!

Patrick x

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