Hi I'm Stacey recently been diagnosed with fibro

I've had this ongoing for years but just been diagnosed via reuhmatioligst, my gp doesn't seem to think that's what I've got he looks at me like I'm crazy! I also have raynauds in hands and feet & chronic urticaria and so posed to be linked does anybody else have these? Feel so isolated and alone no one umderstands because I don't look ill im been judged & often told to get my act together. I'm a proud person but lately I've had no choice but to ask for help! My mum has to help me bath I mean come on I'm 29 this is taking over my life! I don't go anywhere I've got to set my day out and limit myself, I can't even do what I enjoy (gardening) I've got to pay someone to cut my grass etc. A friend told me to apply for pip so I did yet no joy as aperntly I don't look like I'm ill. My medical was done by a paramedic who knew nothing about fibro why do I always have to fight I've got no strength in me to go to tribunal I've got no 1 to help me my life feels so worthless I hate waking on morning I shouldn't feel this way I've got 2 kids 1yr &10yrs! Please any advice I would appreciate! Sorry such a long message, it's chance to not make sense

6 Replies

  • What lcome to the forum Stacey I read your post with much sadness but unfortunately so many of us have been where you are and still are there. So many people see what is on the outside but not the pain that is inside. It must be especially difficult for you at such a young age and with two young children to look after.

    I don't know how long it is since you had your PIP decision but if it is very recent you could ask for a Mandatory Reconsideration. Have you had a copy of the assessment as it is amazing the mistakes they make with my OH she said he took an epilepsy drug and gave them dosage. If he had taken that dosage I would have been arranging his funeral, she had no excuse as she hasd his repeat prescription form. By the time we had picked out the faults you could see it was a work of fiction. The tribunal awarded him 18 points for his ESA instead of this 0 points she had given him.

    Have you looked at our mother site Fibromyalgia Action UK as it has a wealth of information. There is also The Spoon Theory and Love Letter To Normals that you can look up on the internet if you can't find them PM me and they can be printed off and handed to the doubters to try and explain how fibro affects you.

    There are quite a few young mothers on here who I am sure will come on with valuable advice and if there are any specific questions you would like answered I am sure there is someone out there with experience who can help.

    Yes I also suffer with Raynaulds and alot of is have IBS and other

    problems as they seem to go hand in hand with fibro.

    I think you will find everyone friendly and we also try to have a bit of fun at the same time.x

  • Hi Stacey and Welcome.

    I also have Raynauds and chronic urticaria, as well as many other autoimmune conditions including lupus and hypothyroid. This often goes hand in hand with fibro and you will find many of us on this site with more than the fibro to mess up our days!! I guess your GP or rheumatologist has tested you to eliminate other illnesses?

    It cannot be easy for you with looking after young children and keeping a home up together, thank goodness for your mum. The biggest thing to learn is accepting you have limitations and plan your time around them. This is the basis of the Spoon Theory.

    It can be hard to be disciplined not to rush round and do the housework, ironing and shopping just because you woke up feeling better than usual! Inevitably you will crash and suffer the next few days, and wonder if it was worth it. We've all been there, done that, got the t shirt and the photograph, and yes, some of us never learn!

    This site and forum are the best in education about fibro, we even have international contributors who speak highly of the topics discussed here. I am sure you will find a lot of helpful advice on things ranging from benefits to coping strategies, from medications to having a giggle and everything in between.

    Please don't hesitate to ask questions, there will always be someone here who can help or point you in the right direction to get answers.

    Take care and remember you are not alone.


  • Welcome to the forum and it is wonderful to make your acquaintance. I sincerely hope that you find the forum useful, informative and loads of fun! I have pasted you a link to our parent site Fibromyalgia Action UK which hosts loads of useful Fibro information:


    I want to genuinely wish you all the best of luck.

    All my hopes and dreams for you


  • Hi Stacey really sorry to read how much you are struggling.

    I'm 30 myself and have a child who is 7 so I understand how hard looking after everyone else and taking care of yourself is.

    Hugs keeley x

  • Hi, just to let you know there are other mums of young children on here who understand how difficult it is. I am 42 with an 8 year old manic daughter and it is hard. She is growing up fast and as she is getting older she is understanding more which in one way is great because it's better for me but I think I preferred it when she was oblivious to mommy being ill because I want to protect her from it. Please remember all you can do is your best xx

  • hi stacey dont give up i have been through exactly the same as you its a nightmare any other time i would have thought or i carnt be bothered for all the chew but since i gave up work december 2012 they have sent me for medicals assesments the lot and this time i wont give in went for first medical got no points and appealed won next put in for pip didnt get it so appealed lost it still waiting to hear as it has gone to upper tribunal since then put in again for pip and got it for daily living now just been for another medical still waiting for the results if its not what i expect will be appeal again sick to death of it all but if you know your right dont let them try and prove you wrong phone your welfare rights they are really good and they go with you. so chin up hun dont give in x

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