Constant pain with no answers — Scope | Disability forum
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Constant pain with no answers

Luckyst4r Community member Posts: 1 Listener
edited May 2019 in Cerebral palsy

I am a long term sufferer of pain.   In that as a tall person (6ft 10") I have always (since childhood) had constant pain from my neck, throughout my back and shoulders.   This was put down to growing pains long after I stopped growing.
About 5 years ago though it noticeably got worse and with no trigger.  I am constantly kept awake with pain in my arms and hands, and have lost significant strength in both arms, to the point where at my worst I cannot even lift a full mug.  Usage of tools (screwdrivers for example) cause massive shooting pains to go up my hands as I clamp the tool.   Driving can also be an issue.
So, I've been referred by my GP, lots of MRI scans, other tests, answered questions in repetition and no answer. No confirmation of anything.
As a single parent I am completely relied upon, and it's getting to the point where I may well have to stop working (I am under 45) and it feels as if everything around me will fall apart.


  • Richard_Scope
    Richard_Scope Posts: 3,614 Scope online community team
    Hi @Luckyst4r
    Good to meet you and welcome to the community. I am sorry to read that you are coping with a lot of pain at the moment. I'm not medically trained so I am unable to offer any kind of diagnosis but I can suggest looking at our Chronic Pain discussions. Some of our members may have experienced something similar. We also have an Ask a chronic pain advisor discussion.
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @Luckyst4r and a very warm welcome to the community. I am sorry to here you have been unable to get any answers. Living with chronic pain can be incredibly difficult, especially if you don't know the cause of this. I hope you find us a supportive community, we may not have the same difficulties as yourself but we do have the mutual understanding of living with a disability.

  • GizmoTiddles
    GizmoTiddles Community member Posts: 159 Pioneering
    Hi @Luckyst4r
    I also struggle as a long time sufferer of pain throughout ,back neck feet hands etc and seen various specialist over the years. Now at 69 have got used to some of the buncum answers through the revolving doors that the NHS has now become. 
    Different diagnosis by different drs for the same complaint .
    Like you I am now having problems gripping and lifting.
    Back last year after x-rays on hip joints and hands .( I have chronic OA and gout) it took longer than expected to get results back.
    Hips ok but it was found that I have diffuse idiopathic skeletal hyperostosis (dish or forrestiers disease)Rare but which explains a lot of the pain and stiffness .
    My physiotherapist knows more about it than the drs in my practice ,mostly locums who have never heard of it without looking online.
    Recommend swimming and heat ,which possibly you also may have been told ?
    Going though the process of getting a referral but getting a specialist in the UK seems to be a problem.
     I've been through the pip route with lots of advice on this and other forums and have been awarded enhanced on both sections .
    Whilst it doesn't help the pain it affords me the freedom to afford things that can help alleviate it.
    I wish you well on your journey to a successful diagnosis 
    Sorry for a longer post 
  • Beverley2712
    Beverley2712 Community member Posts: 8 Listener
    I have fybromyalgia and OA in contstant pain !!
  • Antonia_Alumni
    Antonia_Alumni Scope alumni Posts: 1,780 Pioneering
    Welcome to the community @Luckyst4r how are you doing today. I am sorry to hear this, have you tried a pain clinic? Your GP can refer you to them. 
  • bonnielassie
    bonnielassie Community member Posts: 26 Courageous
    @Luckyst4r. Sorry to hear that you are in so much pain, especially as a single parent! You might ask to be referred to guys&,St Thomas hospital in London. If you ask you will probably qualify for hospital transport. Ask to be referred to the input management programme, after which you will be invited into that department for an assessment to see if they can help you. It's well worth it, involves a training course on managing pain and a (I found) fairly small operation to insert an implant into your back to help keep the pain down. If you have any questions is be happy to answer them. Good luck.
  • RiyadBrown
    RiyadBrown Community member Posts: 18 Connected
    edited September 2019
    Welcome to the great community! I am new too. 
    I am sorry to hear that. 
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Welcome to the community @RiyadBrown, is there anything we can help you with?


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