Fibromyalgia Action UK
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Hey :)

Hey :)

Hello,

This is my first post to the site. I do read the daily posts from a quiet distance and find it comforting having a familiar subject of discussion. For the past few years I have been told I have Fibromyalgia. I have been prescribed a whole host of medication and sometimes am not wholly sure what day it is to be honest! :) Not that I am complaining because sometimes its nice to float through a day or two. :)

I find it very hard to discuss my condition with my family and friends as I feel a bit of moaner and a groaner, so I don't. However, I would love to be able to tell some days that I hurt right down and through into my core, that I cant string two thoughts together or that my body wont coordinate very well, that I cant feel my arms or legs or that they wont go in the direction I'm asking them to! :) But again I feel a moaner.

When I get time where no one else is around I cry a lot and feel silly for crying. The doctor has prescribed me yet another tablet! I don't want it. I now feel like I am defined by a condition, rather than just being me.

I do read the posts on here all the time and I feel you, each and every one.

I have always worked (just upped the meds and at times needed a little time off here and there) , I have just competed a BA with Honours (by blood, sweat and tears!) and am in the process of starting my own business.

As the face of something very positive I smile and laugh and always will for the good of what I am trying to do.

But underneath I feel very lonely and isolated by feelings I am not in control of and I suck them up until I need a quiet space, just me.

I have a good life, a loving family, a beautiful child, I try to throw glitter at rainy, cold, low, hot, painful, emotional, foggy, damn right confused, uncoordinated days and have developed a bit of an addiction to Chai tea!

Although I am quietly fogged (playing the scatty one, the clumsy one and the vague one!), rather than just telling people, I try to hold onto the good and notice the small things in life that make me smile.

I am just sending a BIG BIG tub (shakey or straight up pour out) of glitter to you all today, to throw in the face of a bad day when you need it.

Shiny always makes things look brighter.

Stay well, look after yourselves, chuck it when you need it :)

10 Replies
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Hi and thanks for the glitter - I will keep it close at hand :)

Welcome to our happy little band of fibro folk. Keep that positive mental attitude cos believe me it helps. Its very hard isn't it not to sound like you are moaning. I use a number scale at work just to let people know what sort of day it is. The scale works from 1-10 and they know to give a wide berth if it's an 8. Above an 8 and I wouldn't be at work!

Yep I am the clumsy one, have a cup with a lid because I can't be trusted not to wear the contents or throw them over the computer or somebody else! Personally I can't tolerate prescription meds so rely on alternatives, no processed foods or refined sugars and alternative treatments, massage, chiropractor, hypnotherapy. As fibro is different for all of us what works for one won't necessarily work for another. It's a case of trial and error. Feel free to vent frustrations, rant, joke or ask questions. We have all generally been there and understand how tough it can be.

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Like your reply dinkie , I'll give my day an 8 as been a rubbish one feeling unwell with fibro today but yes think scoring out of 10 is a good idea. Yes I agree alternate treatments are a good thing to try I have the occasional head massage to relief headaches really relaxing. , Like you I cannot tolerate much in the way of meds. Hav e a good evening xxx

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Thanks. Scores work for me as it means I don't have to explain which bit hurts. It helps colleagues know in one word what sort of day I am likely to have that way I can't be accused of moaning about it!

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Hi there I'm sending a link to our main site which I hope you find fmauk.org/ What a lovely 1st post you have written introducing yourself, you have shown with great strength hard work and positivity that you can achieve to to a very high level Congratulations Yes I think coming on the forum we can understand what fibro throws at us on a daily basis , so we get to share and feel the warmth back from others who are treading the same boards. Lovely you have a good family and a child ,.when the going gets tough they are the people who are there for support and love, yes your right we try hide it and put on that happy face as we feel like we are having a moan but I think our true friends can see and smpathise for us , my besties are very supportive and I know secretly they are glad it's not them with this condition. I think I'll have some of your glitter today thankyou . If you would like to lock your posts so only our members can see here's the link. healthunlocked.com/fibromya... it normally generates more replies as then only our community can see and not open to all of the internet. See you around and take care xxx

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Hello, I just wanted to wish you a very warm welcome to our great support group. I'm sure you will find plenty of help and advice and hopefully make some new friends along the way.

If you need any help with anything please just ask. The admin team are always happy to help if they can. I hope you have a nice evening xx

Momo

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Hello & welcome & thank you for a lovely introductory post & also for the glitter!

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Hi Hun, welcome to our lovely group. Thank you for the glitter, I have a feeling it’s going to be used a lot.

Take care lovely and feel free to talk anytime you want to xx

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Hi, thank you for the glitter! It's been a cold, grey, rainy day here - so a bit of shiny stuff always helps!

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Hi quietlyfogged, I love your description of fibro, it is exactly that and more! Well done for achieving all that you have in the face of it, you are an inspiration to the young people with fibro! Xx

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Love the glittery generosity, much in need just now. Welcome and thanks. All the best.

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