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Having fibromyalgia and asking for help!

Becspitz Member Posts: 5 Listener
Hello all,
 I have so many questions and emotions running wild don't know where to start..
All my life I have worked 24/7 years ago my chiropractor warned me of 'abusing' my body, now I feel so lazy, I got diagnosed with fibromyalgia and chronic pain and 12months ago and also gave up doing my career due to the pain and swelling etc it made worse, I've been trying to find a career I can do and really struggling as it can just go wild at the flick of a switch. 
I have been told I'm maxed out on pain killers etc other then one other I can get from the pain clinic so back there again tomorrow. But my problem is i do as much as I can for myself with herbs, diet, massage, lasers, I struggle with the doing nothing part, always said 'no pain no gain' but I'm really struggling at the moment I hardly do anything other then manage the pain I can do stuff to make it better but then I don't have enough time to work and if I don't work the bills don't get paid, I'm only just scrapping through as it is.
I'm having a blue day as I have not slept for weeks and nothing is touching the pain and I'm so tired it's not even funny. 
I feel like I'm to able bodied to claim any money and if I'm honest a little too proud I'm a single mum and classed as self employed I don't like letting people down but I have to live day by day depending on how I feel. I keep trying to find a job I can do and have spent all my savings trying to retrain in alsorts that I can do with my health being like it is, I cannot afford to spend the time looking after myself the way I need to, to keep the pain down,  I would quiet happily keep well drugged up and carry on but according to my doc that's not an option. I've never even claimed unEmployment or job seekers would do any job till I found something better. I use to ride, compete my dogs and horses, go out with friends,  Go to. They gym but slowly over the past 15yrs iv had to slow everything down, I never go out as the recovery is stupid it will take. Over a week and. I don't even drink or get home late! Horses are long gone and dogs are just pets. The house is in need of updating I've had to learn to ignore the cleaning I don't think this helps.

So basically 'Help!' how do others juggle everything? Any advice on what I can do for work? Pain control, anything my brains to tired and so forgetful at the moment.

Sorry for my moan but any help is warmly welcome,  I also feel people judge me if I say what's wrong with me like they think it's the new fad illness and I'm a fake and lazy!

Thank you in advance 
Becky xx

Ps. Sorry if this is confusing to read I'm struggling to concentrate x


  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Hi @Becspitz I am sorry to hear what you've been going through, sounds very stressful for you! Many members of our community suffer with Fibromyalgia and Chronic Pain, I'm sure they will get in contact soon to offer their support and share their experiences.

    In the meantime, have you checked out our dealing with chronic pain message board? Do let us know if we can be of any further help :)
    Disability Gamechanger - 2019
  • Mariawaller13
    Mariawaller13 Member Posts: 2 Listener
    Hello Beckie.
    I am sorry to hear you are going through a lot atm. My name is Maria, I'm new to the group and I too have fibromyalgia.
    Number 1, your not lazy you have fibromyalgia and as you well know it takes ova your whole life.
    I too had a very busy life, worked 7 days a week and so on. I hear you are looking for work,  you don't want to claim benefits and your a single mum.
    ADVICE: be kind to yourself.
    If your not able to look after yourself, give yourself a break from everything that's going on, who else is going to help you ? 
    You can not b proud with fibromyalgia. If you need to claim benefits then claim them, even if it's until u get your health on track.
    My pain is all over the place and I don't know how I'm feeling from one day to the next. To help myself I qualified as a counsellor/ therapist and I am volunteering for a charity until I feel well enough and had more training to b able  to start telephone counselling.
    The most important advice I do give, as I've said is b kind to yourself, start liking yourself and do things you are going to enjoy that don't add to feeling poorly.
    Change things in your life such as shopping, instead of going to the shops, get it delivered. Cook quick easy meals if your well enough and freeze extra made for when you have a bad day.
    Soak your body in a hot bath to relax and help sooth your pain, but most of all you must relax, try not to get upset or anxious because your body will turn those behaviours into pain.
    Eat plenty of or as much as you can, fresh fruit & veg.
    Most of all, don't bottle up your stuff, if you need to talk use this forum to do exactly what it is here for ..... support.

    I wish you all the best fibro worrior ?
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Hi @Becspitz
    Welcome to the community, it can be very hard to accept change cant it. Firstly, Id like to say that you shouldnt be too proud to claim any benefits you may be entitled to, there is no shame in accepting extra support. Our study shows that disabled people on average spend £583 a month more than a non disabled person to accomadate their needs and so if you can get financial support then you should.

    We have a benefits calculator here that you can fill in to see if you are entitled to anything and it may be worth speaking to your local CAB for more advice.

    Also have you ever heard of social prescribing? It may be worth asking your GP if it is something they do. Basically it is about looking at the needs of a disabled person or someone with long term chronic conditions as a whole and seeing what services or support could benefit their life.

    ALso you mention that you used to ride horses, as you probably know, many animals can bring calmness and support to humans and I wondered if you had read this article called 'How the comfort of a horse helped me deal with fibromyalgia' - I know you may not be well enough to keep a horse yourself, but do you think spending time with horses would help you? I have a few horsey friends and I know they'd be happy to have someone with horse knowledge like you come and spend a little time with them even if it was just sitting with them and stroking/brushing horses. Would that be of interest to you? Could you have a look round for people with horses near you?

    Constant pain and a lack of sleep really effect a person, so it is no wonder you are feeling blue. But remember you arent alone, you can chat with us here on the online community and maybe you could check out Fibromyalgia UK - the UK charity for Fibromyagia. - you could also look to see if their are any support groups in your area, talking to someone who gets it, who knows what you are going through can be so helpful.
    Senior online community officer
  • Becspitz
    Becspitz Member Posts: 5 Listener
    Thank you all I'm much more positive today just had a bit of a wow is me day! Still very tired but did a new thing and went to bed when I got back from the pain clinic.

    I told her about this forum she is going to tell her other clients. It's my first time back with her for 11 months and she as always was brilliant,  she professionally showed her concern over some things the doctor is not looking into more, she is worried a bit more is going off which I guess like with animals you do find that things link together. Thank you for all the information, my horses are with a friend now I could not part with 3 mum and daughter and the mini so I can go anytime for love, always feel better after some snuggles well apart from the mini who is crazy so she just makes me laugh lots. I've got lots to be getting on with. I'm hoping once I get some sleep again I will feel much better ? getting use to the waves/circle of things with fibro. 
    I think the telephone councillor is a brilliant idea will have a think about things along those lines. 
    Thank you all 
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    Hi I'm a fibrowarrior too and know how you feel. It takes time to get used to the new you and doing things according to how you feel. I work part time 7.5 hours per week over 5 days and that's enough for me just now. The benefits for me outweigh the non benefits lol I can't think of the right word. It's important to recognise achievements daily big or small as it's you giving you a pat on the back and recognising you are making progress. Message me igpf you want to chat. Take Care x


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