Living with fibromyalgia

[Alice2701]

Hello my names Alice and I'm 25 years old and for 10 years I have been struggling with pain and extreme fatigue to which they gave me multiple blood test and said we put you under the tired category and your bloods have come back normal so it's growing pains or I'm sorry we just don't no what's causing your pain to which I would be angry and upset as they were making me feel I was making it up they just told me to take ibruphen (which didn't work) so I battled every day getting frustrated at my self as I couldn't do what normal people my age could do and was embarrassed that I needed to take naps during the day I went back to the doctors and explained I have been battling this for 10 years and he was amazing listen to me understood me and sent me to a mineral hospital which I now have been diagnosed with fibromyalgia, I was upset but also relieved that someone actually understood what I was going through I work 20 hours and I have a 1year old so life is tough but I wouldn't change it for the world I just wish my family understood more I hate being called lazy !! I wish I could but my son in a child care 1 extra day because he loves it but also I can have a restful day and try and get things done at my own pace but child care is so expensive so I wish I could claim pip just to use to give my son that extra day at child minders and do things that I can't always do anyway thanks for letting me moan but no one understands it unless there going through it. I feel for each and every one of you and keep fighting as much as you can I'm not ready to give up yet x

[neesey1005]

I am so sorry you got fibromyalgia so young - I have had it since I was in my fifties and my boys are grown up - and I find it difficult and I have lost a couple of friends and some of my family think I am "making it up" even though I have been through lots of tests and hospital visits over the years I thank god I never had fibromyalgia when I was young - I wish you the very best - hope this site helps you 😊

[Alice2701 in reply to neesey1005]

Thanks for your reply I can understand why people think we making it up because they can't see anything wrong but I wish they could feel the way we do just for a minute . X

[Used2be]

To my shame I thought my sis in law was lazy as she sunbathed (or so I thought) while I and everyone else tore round getting a huge BBQ ready. Now here I am in my fifties unable to walk far or do much. Such a shame you have this at such a young age, but stats show you have a very good chance of recovering, so try to stay strong 🌹

[Alice2701 in reply to Used2be]

Not much chance for me he thinks it will only get worse and my chances of getting arthritis is very high as my sister 18 months older than me has just been diagnosed my mum has osteoarthritis my dad has rhometoid arthritis and my cousin got dignosed at 28 so he thinks it's only a matter of time before I get it 😩 But look on the positives of life X

[Used2be in reply to Alice2701]

He sounds negative, yes you have some experience of what it means to be disabled in your family, but hopefully you can enjoy nature, music, sunshine. Our minds are our friends and I hope yours is able to lift your spirits when you feel low Alice. Wishing you stars and sunshine xx

[Hollie121]

Hi I'm a mum to a 15 year old daughter who was diagnosed at 14 she had been haveing pain and cf for a few years I couldn't understand what was wrong with her but had a feeling it was more than just frowning pains as she was suffering so much with lots of other things ibs acid reflux hyper mobility anxiety I find it really hard to cope with her dad didn't understand felt like I had no one now he understands as he's read up about it I find I can lean on him for surport but it's other family members who are ignorant

[Alice2701 in reply to Hollie121]

I totally understand where your coming from it's so frustrating but I keep trying to explain no matter how annoying it gets I need people to understand it makes my blood boil when people say it's in your head or just try and ignore it or just get on with it I am getting on with it but it you don't understand the struggle .#i m struggling to get out of bed today #i need to tidy up but have no energy #flagging after a couple of hours after I start work # looking forward to bed time ect ect #how my life is now # fibromyalgia what a life stealer you are 😢

[Cmh59 in reply to Alice2701]

My mother has had Fibro for years and suffered with many things. Chronic fatigue, depression, bad knees? Body pain. Just always remenber get being sick. Now fast forward I am 60 and she is 80. I really feel like history has repeated itself. I wasn't diagnosed until after 50 with the Fibro and then RA followed. So many times I have to cancel plans because of pain. Feel so tired. Don't sleep well. Spouse has told me I am lazy and crazy and don't want to work. Hell I started working at 14. People do not understand. They see you walking so why do you need a handicap plaque for car? Yea my hands aren't all twisted which is RA symptom, but my bones hurt terribly. Thank God for pain management dr., rheumatologist.

[peck]

Hi Alice and welcome to our forum.All of us have been through at least one of these things in our life. Don't let it get you down.Hang out around here...I'm sure you will enjoy it!!! Peck.🐤

[TheAuthor]

Hi Alice2701

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 you a link below to our mother site, FMA UK which hosts loads of useful Fibro information:

fmauk.org/

I am so genuinely sorry to read of how you are suffering and struggling and I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

[Alice2701 in reply to TheAuthor]

Thank you ken 😊 Xxx

[TheAuthor in reply to Alice2701]

x

[Hidden]

It gives me the right hump ppl telling you there's nothing wrong with you and its all in your head. That alone makes you mentally ill. I think its what most most ppl with fybro have had to go through this. Good luck

[Petitepam]

Hi Alice, I feel for you ha ving fibro and a young baby (which is exhausting on it's own). The people who have judged you lazy don't know any better they suffer from lack of empathy. You know what's right for your body and your baby. Try to forget about the people who don't treat you right as thinking about what they say and getting upset uses up energy that you don't have to spare.

Take care of yourself and your family

Pam

[Alice2701 in reply to Petitepam]

Thank you so much means a lot hope your having a good day pan xxx

[Jcwg]

Hi Alice,

I realy feel for you having to deal with this at such a young age as well as having a 1yr old to look after.

At least you have found this site, which makes us not feel so alone as we can share with others that do understand, how we are feeling as well as get some good advice.

Try to relax as much as you can, listening to meditation cd's or apps on my phone has helped me. I am still struggling with it all myself but I feel a lot better than i did this time last year.

keep fighting, gentle hugs.

[Sab123blossom]

All the very best for your continuing positivity!...keep on keeping on ! you are a courageous and an inspiration....and yes come on here and laugh o, vent or cry...we are all in empathy with each other...I find this site and friends here such a support...even when I dont reply ..I still am listening and sharing...Go well...! Sabina

[Hidden]

Hello Alice- Nurse Gladys Emanuel (open all hours) we.ve all been there!! it is so frustrating when people think you are a fraud because they cannot see and feel your pain. I decided to make myself a word document of how fibro affects my day to day life-left no stone unturned incl. personal hygiene! I see you still work-how old a re you Alice? have you looked into getting ESA support so that you can reduce your working to a minimal-a days work at home is full time on its own? You can get ESA started online if you havn,t already got it, On tis web sight you will get lots of advise and guidance on how to succeed and not feel like a fraud.. I realised a long time ago that housework takes a back seat-my roof will not blow off because my floors have not been hoovered for a week nor that there my windows need a clean!! My family were made to get involved in helping and pocket money and rewards were only given when jobs were done-infact when my daughter was younger she would ask is there was any polishing or ironing extra as she wanted some exytra money-its works! Find some "ME" time in order to relieve your tiredness, maybe find a,local Jacuzzi or better still ask your g.p to refer you to a physio who will take you for hydrotherapy, its such a lovely pamper and good for this condition. Good Luck keep inotuch

[rosewine]

Others have given you marvellous reply so I will just say welcome to the forum Alice and I look forward to your future posts.x😊

[Evelynarnold]

Bless you!! Your doing so well love, be kind to yourself and remember your the important one here!! I so wish you had more support and understanding! It's so hard with. Young child. Pat yourself on the back for how well your managing. You moan as much As you want,we are all here and understand your pain and chronic tiredness. I'm rooting for you!!

[Alice2701 in reply to Evelynarnold]

Thank you I am trying to be fair if it wasn't for him on my days off I would just stay in bed and try and sleep so I'm thank ful he makes me move even tho sometimes I'm like please go back to sleep I can't get up yet i always feel like I have Had no sleep even when I have . It takes me a while to get grips in the morning .

[Hidden]

What a relief to finally have a diagnosis after so many years. I'm sorry it took so long for you to find a doctor who understood your pain. Good doctors are rare gems in my experience. You need to give yourself credit for doing the best you can. Most people I know who aren't in consant pain don't understand that we with fibromyalgia don't want to live the way we have to. You will find a lot of support here!

[Alice2701 in reply to Hidden]

Thank you I would do anything not to have this as it literally runs ur life but I count my self lucky that I'm still here it could be alot worse x

[fibo]

I feel very sorry for you being so young I did not get fibromyalgia till I was 40, I copied for the first 10yrs but then started to get worse so had to give up work now as I am getting up to 60, I spend most of my time lying down watching TV, but my children are grown so only me & my husband to worry about. Just had noravis so all though now over it will take weeks to get my energy back this has started to happen every time now so shatter thanks for the Moan.😆