Just diagonosed after 3 years😞 - Fibromyalgia Acti...

Fibromyalgia Action UK

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Just diagonosed after 3 years😞

Doobie44 profile image
7 Replies

Hi just been diagnosed w with Fibromyalgia 18 of 18 trigger points painful as hell be good to speak to people we feel the same it's been such a long lonely time 😢❤️

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Doobie44 profile image
Doobie44
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7 Replies
hollykarma profile image
hollykarma

I had Fibro for 11 years before being diagnosed. I spent that time being told it was all in my head. When it started I couldn't even get up out of a chair without intense pain. I dread the winter as cold, damp weather makes my condition worse. Just hoping for some sunshine soon as that is the only thing that helps me as I cannot take any of the medications advised for it. You will probably always have flare-ups, but you can also have times when things are much better. That is all that keeps me going.

Dizzytwo profile image
Dizzytwo

Hi there and welcome to the group :) it took me 10yrs to get a diagnoses and thought I was going mad lol I have now had it for 40yrs and I live to tell the tale.

I myself do have other health problems and I mostly need to use a wheelchair which ive never got used to.

But your right it can be a very isolating illness. And definitely lonely at times.

I understand the isolatation been agoraphobic and social phobic. But I do try to keep my mind active and keep the body moving as much has possible.

I have found life with fibro is what you make it. Listen to your body. Rest up when you need too and keep going when you can. I also learnt the hard way. Been angry and upset when in a flare or having a bad day will not make me feel better. It only makes me feel a whole lot worse. So after 40 yrs I've learnt to gow with the flow lol

And I always remind myself fibro is not a terminal illness and yes there will be better days ahead 🤗😘

Momo

PS I see you have left your post unlocked to this community only for privacy reasons you may want to lock it. Also locked posts tend to get more replies. If you wish to lock your post this link will show you how :)

healthunlocked.com/fibromya...

SusieSquirrel profile image
SusieSquirrel

I know the feeling. It is good to have somewhere to ask questions and get replies from people who know what you're going through

Bruton profile image
Bruton

Welcome. Ive been experiencing symptoms from very young. Its taken me over 50 years to find out whats wrong. This group has really helped. It takes 1 to know 1 is so true. Good luck.

Rosco14 profile image
Rosco14

Lots of support on here. Amazing people tooShare with!

Hope you feel better and not lonely x

Brighteyedbabe78 profile image
Brighteyedbabe78

Was fighting with doctors for years before finally got diagnosis. They say it's all in your head. Family and friends didn't believe me. They just thought I was lazy. Learned not to listen to the unbelievers and found a doctor that believed me and helped me. Been through all the physiotherapy and CBT that they throw at you in the beginning and finally got to Pain Clinic. Swapped through many medications until finally finding ones that helped and have more better days than I used to. Still get very tired and sore at times and my mood and motivation drops drastically from time to time but still here fighting the fight. Keep positive and you will get there.

Doobie44 profile image
Doobie44 in reply to Brighteyedbabe78

Thank you I am trying to be as positive ,thanks for sending positive vibes my way ❤️

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