Hi everyone :) Fibromyalgia? - Fibromyalgia Acti...

Fibromyalgia Action UK

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Hi everyone :) Fibromyalgia?

LeviBarnes profile image
12 Replies

Hi, this is my first post on a forum so bare with me if I ramble! I am 23. I've joined the group in order to hopefully speak to people in a similar situation to me after feeling alone for 2 years! I started to get pain after the birth of my son ( with epidural complications). It started with shoulder and neck pain & quickly escalated to pain in all of my muscles. The NHS were quick to argue it was nothing to do with my back trauma from the epi! After 2 years of pain and tiredness, brainfog and digestive problems I still have got no were with a diagnosis. The only condition that has been mentioned is fybro, which does match my symptoms. Any info, advice or experiences shared would be great for me. Thankyou :)

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LeviBarnes
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12 Replies
Ccupcakes profile image
Ccupcakes

Welcome Levi, so sorry you are in pain. There is a lot of good advice to be found here and lots of support. I dare say others will be along soon so for now I would ask if you have actually been referred to a Rheumatologist who can give you a confirmed diagnosis?

LeviBarnes profile image
LeviBarnes in reply to Ccupcakes

Thankyou :) Yes, I finally got referred to a rheumatologist last month after a long long time pestering the GP! Fingers crossed the wait won't be too long.

Ccupcakes profile image
Ccupcakes in reply to LeviBarnes

Good, I hope you get a good one? I think I'm very lucky mine is excellent but I know some aren't. Let us know how you get on won't you?

Sending you cloud hugs xx

LeviBarnes profile image
LeviBarnes in reply to Ccupcakes

I have heard from people in the area they haven't had great experiences but I am hopeful! Thankyou :) x

Leonwp profile image
Leonwp

A very big welcome,im from the RA side but im sure the lovely members here will be able to give you answers and will be able to understand completely so dont feel on your own with this anymore.

Blessings

TheAuthor profile image
TheAuthor

Hi LeviBarnes

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. I have pasted for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:

fmauk.org/

I am so genuinely sorry to read about what you have been having to endure, 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

Hi I was given the diagnosis last year after 8 years of seeing every specialist in the area, been made to feel like It was all in my head. To be honest I think the doctor only put a name to my symptoms to get me out of her office, so I still feel lost and feel I can't go to a doctor again because they ve already told me what the problem is. I ve suffered from pins and needles in my arms and legs since 2008, massive fatigue which I find the hardest to deal with, blistering of my skin and mouth, which I take eryrhromicin for which helps to keep it at bay. Vision problems in left eye, balance problems, brain fog is terrible too but brings great amusement to my family the things Ive said and done. I think that getting a diagnosis is good so you have a reason for all your symptons but its hard to accept when doctors don t seem to believe in the condition either. I would probably just say to the doctor is it fibro before you get past from pillar to post like I did for years and take it from there , I had never heard of fibro before the doctor said it but now I know a few people who have had it diagnosed. I also found that once they diagnose fibro its all about self help and reading through other peoples post on this sie has been helpful. Take care x

Sorry I m new to posting on sites so still at rambling stage 😊

LeviBarnes profile image
LeviBarnes in reply to

Hi, thankyou for your reply. I know exactly how you feel! My GP said to me 'You have fybromyalgia, its in your head, you can make yourself better'. For over a year before that I was being told it was the aftermath of having a baby & it would go away. I always knew this was not true. There are so many confusing aspects.. 'What are my flare ups triggered by, is my medication making it worse' ect. I feel that fybromyalgia is probably an accurate diagnosis for me although i feel there is more to it. Thankyou for the advice It is nice to speak to other people that understand for the first time in 2 years! X

Hi again I think a lot of people are being told its all in their heads but since joining this site there are a lot of people sharing that same head. I found that over doing it the cold and sleepless nights affect me but sometimes you just wake up in the morning and you feel flattened into the mattress with no real explanation. Last week I sprained my middle finger squeezing out a tea bag and it throbbed like toothache for two days 😂. The only advice I think has been good for me is writing everything down and showing it to you GP because you never remember when you get there. You know your own body and you know when something isn't normal. Take care x

Matrix profile image
Matrix

I started really young with fibro with fibro 11/12 and my first baby was a really traumatic affair with me not being put out so it meant I felt everything After that my fibro which was bad racked up and my neck and shoulders were so bad ,I was only 21 .i went to an osteopath who helped me ,I will say don't twist look straight on at people and to etc and when it was bad I wore a soft collar it helped so much .Take care sweetie you can get through it I did and so will you .xx😇

LeviBarnes profile image
LeviBarnes in reply to Matrix

Thankyou very much for your reply & I will take your advice onboard :) it helps to hear that it is possible to get through it! Xx

Matrix profile image
Matrix in reply to LeviBarnes

Well I had three babies and not saying it's easy but it can be done and at the end of the day what else can we do but accept .My best advice is get a hobby it works great as a distraction and you can forget the pain for a while . Xx

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please tell me how old u all were when u were diagnosed and what ur feelings were please. Thanx