I've had fibromyalgia for over a year now, and it's getting hard

Posted , 7 users are following.

over the year I've been finding my pains are getting bad, it's got to the stage my husband bought me a mobility scooter this week as I'm finding I just can not walk far without my legs giving up,and by the time I get back home I'm in so much pain, sometimes my legs give up going down stairs or going up, I've had 3 falls so far in the last few months falling down stairs, now I find it's getting hard to open milk bottles and jars and things, even writing my fingers hurt, cutting bread my hands hurt, I also suffer with diabetes which my go says makes it worse as both are fighting against each other, I really don't know what to do anymore, I cry and get so frustrated as I can't do the things I want anymore and I feel so sorry for my husband as he works full time and then does a lot at home when he gets home, I've even herd him cry worrying over me, I would love to work, to get some money off my own, I don't even know if I can get any help, my husband pays for a cleaner to come in twice a week as I can't even do that, I feel tide all the time, I can't excise as I get pains quickly and feel I've run a mile, is there anyone else on here that's going through all this as much as I am and what help do you get ? Can I get help from benefits or even mobility stuff free even though my husbands working, I'm 51 and feeling my life is coming to a end that I can't do anything for myself, is this classed as a disability and does it mean we can get benefits I really don't know where to start or who to ask for help, can people please give me some advice.. Thank you in advance. 

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  • Posted

    Hi lea, oh bless you....

    You can get quite a lot of help....are you under, or have been seen by a rheumatologist ?.......you can claim PIP...,that used to be called DLA....you can claim for mobility allowance, also daily living allowance...get in touch with your social services department straight away...you would also quality for daily living allowance, and could get many aids.....are you on medication for your problems ? Also the fact that your husband has had to employ a cleaner helps....Also the terrible depression it causes also.....

    Try to find out if there is a support group in your local area to join..it really helps......I wish you all the luck and big, big hugs in the world, I know !! This is a horrible and depressing illness...

    Phone tommow and get the forms...and be totally honest ABOUT the IMPACT IT HAS HAD ON BOTH YOUR LIVES...hugs once again...DEIRDRE xx

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    • Posted

      Thank you for your reply, no never seen a rheumatologist, and yes I'm on medication, I will contact pip, I'm going to see my go tomorrow and talk to her I really never new I could get any help I never even thought of it as a disability I'm so glad I've joined this thank you again x
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  • Posted

    Hi Lea, so sorry to hear you're going through this. I have fibromyalgia and ME and have what sound like very similar problems to you, so hoping that it will help to share my 'coping mechanisms.' I use a mobility scooter to get out and about and currently can't walk very far at all so use a wheelchair in the house as well. It takes quite a lot of getting used to - emotionally as well as physically- but staying off my feet substantially reduces my pain so is very much worth it.

    There are all sorts of gadgets that you can buy to help with household tasks - I would start by browsing mobility websites. I also have splinted supports for both wrists when I need to do stuff like chopping food, which my hands can't cope with without support. Having a cleaner in is really good - again, I do the same. It means you can focus on the things that you can do without having to worry about the housework.

    Technically, yes, it counts as a disability and you should be able to get PIP. In practice, however, they don't want to give out any money and so it is a fight. I'm in the middle of my second attempt to get financial support - my first was the years ago, I was basically accused by them of lying, and I wasn't emotionally up to the fight, so it's taken a while to try again. But this time I know what I'm up against and armed for the fight! It's worth trying, bit know that they will start by assuming you are lying and so be emotionally guarded against that.

    Hope that helps in some way! I have lived with this for 11 years, and you do get used to it at some point - and, more than that, you'll be able to begin 'living' again - you'll find out what you can do, develop new hobbies (I discovered crafts!) and life will get good again. I've had two children despite my illness - now aged 5 and 7 - and life is good for us most days, despite the frustrations.

    Sending love and hugs. It does get easier.

    Beth xx

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    • Posted

      Thank you Beth for your reply, yes it is hard, I'm lucky I don't get depressed with it, I only get frustrated when I can't do something, and it upsets me, I have learned to cope with it, if anything it's my husband that puts his foot down as I can be stubborn but then I suffer for it, but it's hard to slow down when your not used to others doing things for you, I hate siting watching someone else cleaning my home even though they do a better job then me..lol I know I have to slow down and if I start to try and get the help I need maybe it will help, but I do love my scooter as now I can go further without paying out cabs all the time, thanks for you reply and good luck with you x
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  • Posted

    Hi Lea

    It's difficult and apart from what the others have already suggested on this forum, all I can add is that you stay calm and positive and take a day at a time.  Don't stress over the things you can't do. Learn to accept the pains and take time out for yourself. (Cognitive Behavior Therapy) CBT is a mindful therapy that can help you to train your mind in how you go about your daily life alongside with the breathing techniques. This can be arranged through your GP. Although this therapy doesn't take the pains away it helps to think in a more mindful and positive way.

    I hope you get answers soon and gentle hugs to you. Take care wink x

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  • Posted

    my heart goes out to you & I hope there is someone who can give you the advice you need. I will keep my fingers crossed for that. Sending some hugs to you xxx
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  • Posted

    Hi lea35301

    My heart goes out to you.

    l woke up this morning tired and in pain with my

    arms feet and back, but reading your message I have nothing to complain about.

    I feel like crying sometimes when I think this is

    Forever. I too have got worse over the last year n

    Not to the degree you have.

    Just a thought but would cognative therapy help

    My thoughts will be with you .God blessMace

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    • Posted

      I get a lot of pain and pins and needles in my feet and pain in my hands, also have dietbeters don't help, as I don't know if it's my sugars or just the fibromyalgia or both, that's why last night I was on here late as it kept me awake, so I know how your feeling to. X
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  • Posted

    If you call your local Social Services and ask to be put through to the occupational health department, you can do a self referral. They will come out to your house to assess you, and give you equipment to help. I got a claw for picking stuff up, a shower bench, a raised loo seat, a bed rail, a step, a raised couch, and a kettle swing. Good luck and big (((hugs)))
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  • Posted

    Thank you everyone, it's nice to know I'm not alone and I will be contacting people next week to see what help I can get, if any, thank you again x
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