Husband diagnosed with ME

Husband diagnosed with fibro last month ,

He's in extreme pain everyday and his feet and legs very sore :(

I'm working and we have 3 children.

He's receiving hR dla MA

And esa support group ,

what help

Is there for me

If i resign to look after him ?

He can't do much for himself apart from toilet himself.

he's got worse in past 4 months than Ever. Memory very bad too.

All help and advice welcome ?

He's is 33 and was perfectly healthy builder until oct 2014 when took a flu and never recovered , resulting in this diagnosis.

Does fibro diagnosis seem correct ?

18 Replies

  • Diagnosed with fibro and ME

  • Can you claim carers allowance for looking after him?

  • Thank you ,

    Yes I'd

    Say I could but it will down in money as I earn £210 per week

  • Hi there

    When you ask if there is any help for you, do you mean benefits wise? To my knowledge I think that the only benefit you can claim is Carers Allowance. However, I am not absolutely sure, so hopefully someone will come along and put me right. This is because you are working. How old are your children?

    Unfortunately I do not know what hr and MA is. Are you aware that your husband will have to change from DLA to PIP in the coming months? This is being rolled out by the DWP and everyone will eventually have to change.

    Please could I ask who diagnosed your husband and why you doubt whether or not it is Fibromyalgia?

    Best wishes

    Lu x

  • Higher rate care and mobility allowance.

    Have you applied for a car under the motorbility scheme?

  • Ah. Thank you. No I haven't.

  • Applies to people on hight rate mobility allowance. Also you should be able to get a 25% discount on your council tax for having a disabled person living with you.

  • I'm guessing that reply wasn't for me. Shall I delete my reply to Ann as you obviously know far more about this than I do?

  • No don't want a car cos we av one. Also because he not getting any care allowance from dla he needs the mobility component money.

  • Hi there , yes mean higher rate mobility allowance.

    a consultant diagnosed him. I jus feel with his symptoms that he must av something worse ? Maybe fibro be ME are this bad ? He wakes up feeling like he's been beaten with baseball bats ! His legs and feet pain prevent him from walking more than a couple of steps as the pain is so severe.

    is fibro like that ? Thanks so much for replies ,

    yes meant benefit help or even help with caring for him and the children. We have 3 children ages 2,8&9

  • Hi

    Yes I can assure you that Fibro and ME can be as bad as this.

    When I wake up I feel like I've been hit by a truck. Right at this moment I'm in so much pain in my back it actually feels like it's on fire. I can't sleep on my back or my stomach, so have to sleep on my side.

    In the mornings it's more a case of rolling out of bed as whichever side I've slept on is numb.

    I'm guessing you get Working Tax Credits and Child Tax Credits?

  • Oh dear ,

    I'm sorry to hear that. it's very hard to imagine how bad it is. I see my husband suffering a lot and that gives me some idea, do u find when u tell people you have fibro they say oh that makes you tired ?

    it's totally underestimated how debilitating it is !

    is there light at the end ? Does it burn out? Do symptoms get worse and worse ? Thank you.

  • When I tell people I have Fibro and Chronic Fatigue syndrome the majority have never heard of Fibro. I also get told on a regular basis how well I look.

    I feel I have to be totally honest with you. In my own personal experience there hasn't been any light at the end of the tunnel. In fact, the opposite 😞

    For me it hasn't burnt itself out and I have not heard of any people who have recovered.

    I worked all my life, but struggled hugely, and then a couple of years ago I had a massive trauma in my life which sent my condition spiralling out of control. I have been unable to work since then and some days just getting up, washed and dressed is all I can manage.

    Having said that, some people do manage to find the right medication for them, are able to do some exercise and find a way to manage their condition. I really do hope that your husband is able to do this.

    If you have a good GP they will help and make the correct referrals for him.

    I wish you both all the very best of luck. Please don't hesitate to message me if you need to know any more.

    Gentle hugs to you both

    Lu xx

  • I am so genuinely sorry to read this and I sincerely hope that you can find the answers that you so desperately desire and deserve. I would ring your local authority and ask them for two things. Firstly, a benefits adviser and secondly, an occupational health assessment.

    If you are entitled to any extra money the adviser should be able to tell you, and if he has an occupational health assessment they should be able to get you help with things that you may need such as a raised toilet seat, shower facilities or other help that you ask for.

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

    All my hopes and dreams for you


  • Hi ann, iwould contact ocxupational health, part of your local social services dept, thy can help and advise, re support and respite, equipment etc, and your local carers support, wether receiving carers allowance or not. I am sure you can claim it if working as well. Disability charities such as dial will know more as regards benefits. As regards the fibro it can become more manageable once the right treatment and medication are sorted, and your husband could be having a bad flare which may calm down at some point, what i mean is it might not always be this intense, please let him know this. Hope you find some help soon, you sound under a lot of pressure just now. All the best to you both,

  • I would also add, get gp to check vit d levels, fibro associated with low levels, which intensifies pain in muscles etc.

  • It is possibly post viral fatigue. Rebuilding his immunity and overall mind/ body health would be a helpful way forward.

  • you wont be able to claim carers allowance as he is not in receipt of any care component on his Dla

    I would see a benefits advisor to get a full benefits check

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