Hi, my name is BelieverOfFaith! — Scope | Disability forum
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Hi, my name is BelieverOfFaith!

BelieverOfFaith Community member Posts: 1 Listener
Hello, I've just come across this forum as I'm at a loss as to where to go and was hoping someone may have had or are having similar issues.
My (now retired) GP diagnosed me with fibromyalgia, I was given pregablin and cocodamol to help me with the pain (plus told the pregablin would help with my anxiety). A few weeks ago I went to see another Dr at the surgery and was told there's no record of a fibromyalgia diagnosis.
I requested to be referred for an MRI as I believe I may have MS or possibly ALS as my health is deteriorating rapidly. I'm 45 years old, and for the past year I have been unable to leave the house without a walker.

I am currently fighting for my PIP after informing them of my physical and mental/emotional deterioration, I was only on enhanced living but after I reported the changes they lowered it to standard. I am at the stage now where I have to take it to a tribunal. 

I barely leave the house, and I am relying more and more on taxi's as I have to take my son to school and pick him up. We are also both on the waiting list for an autism and ADHD assessment. He will not eat school dinners so I make him a packed lunch every day.

I am having to skip meals as it is, and I can't make it to appointments I desperately need to attend in order to find out what's going on with my physical health. I have asked for an assessment from adult social care for a home assessment to adapt my home as I can't even get in the bath anymore due to severe muscle weakness.

It's just me and my son, and I am utterly and completely exhausted and it's having a terrible impact on my mental health. My anxiety is through the roof as my family are very abusive and I am isolated and terrified of them causing more problems for me (it's a long story but the short of it is, I have suffered horrific abuse at the hands of my mother since childhood).

Anyway, I was just wondering if anyone could possibly sign post me to anywhere that could help me with my situation and my pip appeal that won't discriminate against me and actually help me so I can attend appointments and be able to concentrate on my son. My mother has used social services against me a number or times now, luckily they finally saw the truth of my situation where my mother is concerned, so she can't use that against me. But my past dealings with them and the abuse I received from them (which they apologised for) doesn't inspire much faith in them and it's impacting me in knowing the best course of action to take.

I was given a psychological 5 hour straight assessment by social services 3 years ago after my Dad died, and they diagnosed me with complex post traumatic stress disorder as well as generalised anxiety disorder. The psychologist I was eventually referred to believed that it best that I get my physical health sorted first before beginning CBT and exposure therapy as she was concerned that it would overwhelm me as I get so exhausted so easily.
Getting my health sorted though has turned out to be almost impossible lately.
I feel I am stuck between a rock and a hard place. Despite my mistrust, I have requested an adult social worker but am still awaiting to be assigned one.

If anyone has any advice or suggestions I would be eternally grateful.


  • JStirling88
    JStirling88 Community member Posts: 4 Listener
    God Bless you Brother or Sister? Wow your situation sounds absolutely terrible and it sounds like there's a  case for negligence with the agency's that appear to have  mistreated you. My advise to you would be to try your best to compile as much supporting information and documentation you can. This should be from Doctor's, Support worker's, Social workers etc... if you're at the point of having to attend a tribunal then this is paramount for getting a positive outcome.  Also "CAB" Have been great to me in the past.  And have the best knowledge and unbiased advice I've ever received.  I hope this helps atleast a little.  Just remember to keep your chin up wards,and that tomorrow's another day.  Most importantly Jesus can Heal us Miraculously so Pray Pray and pray. 
  • Albus_Scope
    Albus_Scope Posts: 4,214 Scope online community team
    Hey there @BelieverOfFaith and a belated welcome to the community. 

    I just wanted to check in and see how you were doing? Have you had a chance to look at the email Adrian sent you a few days ago? I'm hoping the information he provided can offer you some support and guidance. 
    Albus (he/him)

    Online Community Coordinator @ Scope

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