Fibro and fed up — Scope | Disability forum
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Fibro and fed up

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raspberrysorbet66
raspberrysorbet66 Community member Posts: 17 Listener
Hello, late last year I was finally diagnosed with fibro, among other health issues…. I don’t know if I’m even writing in the right place I just feel so let down to be honest. I suffer badly with my mental health, I have long been brushed off with that affecting my physical “it’s all in your head” … “a walk will do you good” “it’s depression” .. it wasn’t and it isn’t… I have actual issues hence finally being diagnosed with fibro. My mental health worker isn’t having it though, it’s like she doesn’t want to admit she was wrong in her judgement, she has been pushing for me to get back to work, that it’ll do me good, I have depression, anxiety PPD, EUPD - and suffered an almighty breakdown which saw me under the crisis team at home for many weeks and physical health issues. It affects my life in an untold amount of ways. The one person who has seen all of this keeps denying me and pushing me and I don’t know why? Does anybody else suffer this amount of pressure? Is there a sell by date on mental health? .. do you only get X amount of years before you’re deemed fit for the outside world? - my head, my heart and now my body hurts daily. I’m beyond sad. 

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  • Rosie_Scope
    Rosie_Scope Posts: 2,213 Scope online community team
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    Hi @raspberrysorbet66, I'm really sorry to read that you're going through all this, it doesn't sound easy at all.

    Physical health can have a real impact on your mental health and I've been through similar experiences where people have put pressure on me to do things I'm just not well enough to manage. It's horrible to feel like you're not being listened to, but you're not alone in your feelings and I know many of our members have been through similar things too.

    If your mental health worker is pushing you too much, is there anyone you could perhaps complain to? Or could you maybe ask to be moved to a new person who might be more supportive? 
    Rosie (she/her)

    Online Community Coordinator @ Scope

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  • Beans1
    Beans1 Community member Posts: 3 Listener
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    Hi Raspberrysorbet66, 
    So sorry to hear about the difficulties you have been experiencing. Professionals have training and knowledge but you are the expert of your condition because you live it. Rather than working against you, why not work with you to understand from your lived experience and at your pace. Professionals also need to be trauma informed in their practice as many people may have experienced trauma and adversity in their lives which is impacting on the mentally and physically. 

    My Mum had fibro and PMR as well as other serious conditions. Despite being prescribed various painkillers including liquid morphine, she would cry out in pain and pray to die so she would get relief from the pain. She died 3 years ago after contracting covid a second time. I love her and miss her every day but am grateful that her suffering has stopped. None of the professionals working with her understood her situation and kept talking about the pain being due to stress. Of course she was stressed because managing pain is stressful so it's a vicious cycle. I didn't fully realise the extent of her pain at the time but I now know because following a viral and  infection in July 2023, I began eexperiencing additional pains, mobility difficulties, chronic fatigue and headaches daily. I have been diagnosed with fibro. I burst into tears when told. 

    I have had rheumatoid arthritis since 2010 and long covid since 2021. I have managed this as best as I can despite the pain, fatigue, brain fog, insomnia etc. However since these fibro symptoms began, the pain and fatigue are on a different level. I struggle to sleep before 3am and am up at 7am for work. Because the condition is not visible to others/ many don't recognise it as a disability and put it down to old age.

    I work in the care service but my managers and some colleagues don't care and are some of the most  unkind, cruel, selfish and bullying people I have ever met.I love my job and am good at what I do. Work related stress, due to bullying, unrealistic expectations and ridiculous workload is making my condition worse.

    Yes having a job can improve a person's mental health but when you have disabilities you need to be in an environment that is caring, empathetic and supportive not nasty and toxic. People need to understand how any condition might affect you and remove barriers which prevent you from functioning at your best and being your authentic self. 

    I am at the early stages of my fibro journey and looking into natural remedies including acupuncture, which I am told may help. I need to change and improve my diet to lose weight and try to excercise more. This is not easy as alternative  treatments cost money and it is hard to move let alone  excercise when you are in horrendous pain. I sometimes dread getting up in the morning because I don't know which part of my body will hurt most and it can be different to the previous day. If I get some relief from the pain, I wonder when and where the pain will be in the evening and night. 
    I know that there are worse conditions and suffering but fibro is very painful and debilitating. 

    I hope you find the relief, understanding and support you need and deserve. Please know that you are not alone and that there are people who care. 






  • wanderer
    wanderer Community member Posts: 14 Courageous
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    Having worked in mental health and running my own counselling practice I am more than aware of the shortfalls within the system. There is always a connection between physical health and mental health, both need to be nurtured to enable a life that is liveable. There should always be a process in place within organisations where you can change/talk openly about your support, I would look into this. Hopefully there is someone that will listen.
    I am sad to hear yet another negative story about help people are getting. Surround yourself with people who are good for you.
    I really hope you find some suitable help.
  • AngieC
    AngieC Community member Posts: 4 Listener
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    Hi I was diagnosed with fibromyalgia in October 2020.  I have been advised that there is a link between PTSD, depression and fibromyalgia.  Unfortunately I also have bilateral coxa valga hips which apparently is when the hips sockets are at the wrong angle and usually this presents with other neurological issues.  I had a full hysterectomy 2 years ago and wasn't given HRT for 6 months until I had a massive mental breakdown.  I'm still recovering and 18 months after my breakdown I have more good days than bad. Obviously pain, hormones and mental health aswell as ASD all make life difficult but Acupuncture helped the most alongside drinking kefir to help my microbiome system and hiatus hernia.
    I am 54 I am finally feeling a lot better pain wise after 12 weeks of acupuncture.  I am able to walk short distances and even went on the back of my husband's motorbike a few times (even if I pay for it afterwards). I count everything as a little win.  My ASD diagnosis explains a lot, especially with the worst case scenario default system I've had all my life.
    Basically I have had to come to terms with that I can't be fixed, I need to do my best to give myself love and self care.
    You are all doing brilliantly well,  spring 🌱🌼 has sprung and as the weather warms up gently ease your body with a mixture of leisure centre health suite hot tubs (ring around your county I have lived in Hampshire for 26 years and had no idea they have discounts for benefits (I get over 50s) and my carer husband goes for free 😁👍. Anyway have a great weekend and remember you aren't alone 🤗

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