Young fibro sufferers

Hi everyone, I'm wondering if there are many members who are young or were young when their symptoms started? And what peoples situations were at the time? I'm 23 and finding it extremely hard to cope with day to day life in so much pain, whilst having to look after two young children. My partner has left work to look after us but money is tight and ESA have now assessed me as fit to work. I really don't feel this is possible. Any advice or experiences would be appreciated. :) x

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  • Hi there

    I was 20 years old when I was diagnosed in 1980 with Fibromyalgia & ME.

    It did take a very long time to find the right set of pain killers that worked for me.

    I managed to work for 34 years and have 2 children.

    I suffered two very severe traumas a couple of years ago and ended up extremely ill and unable to return to work.

    My Fibro symptoms went into orbit and have unfortunately stayed there.

    Have you ever been to a Pain Clinic? If not, ask your GP to refer you to one.

    Have you ever had a course of CBT? Cognitive Behavioural Therapy is a talking therapy which works really well for some people.

    Again, your GP can refer you for that.

    If you are unfit for work you need to claim for ESA and if they put you in the WRAG group you need to apply to be put into the Support Group. The CAB can help you with this.

    I really hope that some of this helps. I know another member that has recently joined who is 20. Would you like me to put you in touch with her?

    Wishing you much peace

    Lu x

    Administrator

  • Thankyou for your reply. It is great to hear that it is possible to have a career whilst suffering with fibro.

    I have been referred to the pain clinic 32 weeks ago but still no appointment!

    The CBT sounds interesting, I will mention it to my GP. Unfortunately he doesn't take me very seriously.

    Your information is very helpful, thankyou! And if you could put me in touch with her that would be great. X

  • Thank you so much for letting me know that the information was useful. I really appreciate that :)

    I too had to wait for a very long time for a Pain Clinic appointment.

    You can go onto our website and request a pack about Fibromyalgia to go your GP. You can have it sent anonymously if you wish fmauk.org

    I had a fairly high level career being a PA to a Director for 20 years. He travelled all over the world and organising itineraries was incredibly challenging!

    I will get in touch with the lady I am thinking of. She doesn't have children, but you may have other things in common.

    Lu xx

  • I will request the pack, it is great that you offer that, I hope my GP will take his time to read it .

    You sound like a very strong person :)

    Thankyou very much. Take care xx

  • On a practical note, if your partner is your carer and he is not working maybe he should try for carers allowance , it's worth a try, it all depends what benefits you are both getting.

    I wasn't diagnosed till my forties but looking back and knowing what I know now I think I had fybro when I was in my teens, I was always aching somewhere they used to say it was growing pains, I had numerous X Rays no scans then, I suffered migraines , stomach problems etc etc

    . I managed to work all my life as a secretary with a well known cosmetic firm, and then I retired to care for my Mum who had dementia it was after that I developed RA osteoarthritis and fibromyalgia, So life does carry on as they say, good luck with everything

  • Thankyou. I've booked an appointment with a benefit advisor, hopefully they will be able to tell us more. I would love to work but my physical and mental state is really not great. I try to spend every bit of energy I have doing things with my children. And the things I can do with them are few and far between. I hate the impact me being poorly has on them.

    I do hope there is a light at the end of the tunnel.

    Well done you for managing to get through such tough times :) thanks for your advice.

  • The time spent with your children is the most important thing, you can always get a job but you'll never get their childhood back, make the most of it. You'll get there don't worry, take care

  • Hi levi, These symptoms were there at a young age. Tiredness was the biggest problem. Now the puzzle is starting to fit very well.

  • Hi, thankyou for your reply :) strangely I didn't have any symptoms whatsoever until a few weeks after having my child at 20 it came on over night. I suppose I was quite a tired teen but that seemed to stop as I got older. Until the day my life changed. I thought It would get used to it but two years on I feel its no easier mentally or physically.

  • Hi LeviBarnes

    I am so genuinely sorry to read of how young you are and with Fibro. I was in my forties when diagnosed, and now I am just ancient! 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

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