I can’t take the pain — Scope | Disability forum
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I can’t take the pain

Tegan Member Posts: 11 Listener
Sorry to whine but I can’t handle the pain. Haven’t been able to walk without  Mobilty aids since March. In pain 24/7 taken so many pain killers I have damaged my liver. Waited 7 months to see neurologist and he turned me away and said I needed to see Rheumatologist as he believes it’s autoimmune.

I heard nothing for weeks so contacted GP to ask about referral and been told rheumatologist has advised my symptoms don't seem to be rheumatological and are not
going to offer me an appointment at present as they don't feel they will be add anything. They have recommended the pain clinic. But my doctors hasn’t referred me to the pain clinic so I’m just left to suffer.

Can’t take pain meds in fear of further damage to liver, sleeping 3-4hrs a night  if I’m lucky, hair falling out in clumps, job threatening to fire me due to capability. 

I have CBT therapy that hasn’t helped with pain. Had a mental health nurse visit who assessed me and said I needed help and she would write to doctor but that was over a month ago and she never wrote to my GP so got no support.

I’m a young widow, I live alone and really struggling mentally and physically 😢


  • janer1967
    janer1967 Member Posts: 12,827 Disability Gamechanger
    Hi there 

    I am sorry to hear what you are going through 

    I would recommend you refer yourself for a care needs assessment via gov website 

    It won't help with pain but ot will do an assessment and make recommendations for adjustments or any care needs and sign post you to relevant services 

    As for pain have you considered alternative medicine like acupuncture,  hypnotherapy,  physio, 

    You may find useful information in our pain section 
    I have professional experience in HR within public,  private, and charity sectors.  If I can help I will 
  • Tegan
    Tegan Member Posts: 11 Listener
    edited November 11
    Tried many methods. Acupuncture, physiotherapy, aromatherapy, EMS, Reiki 

    Adult care services did Make adaptations to my house, perching stool, chair in shower, extra banister on stairs but still a struggle 
  • Tegan
    Tegan Member Posts: 11 Listener
    Really don’t think I can continue living in this kind of pain 
  • Tori_Scope
    Tori_Scope Posts: 6,619

    Scope community team

    edited November 11
    Hi @Tegan :) 

    I'm sorry to hear about the level of pain you're in, and that you haven't been able to access the support that you need yet.

    I know it can take a lot of mental energy, but have you been able to chase either the GP about your pain management clinic referral, or your referral for further support from the mental health nurse? Are you able to contact your GP directly to ask for further support? 

    Do you mind me asking what prompted the mental health nurse to visit you?

    What kind of additional support did the mental health nurse mention that you might be able to benefit from?

    If you feel as though you need someone to talk to, the following organisations are there to listen:
    • Samaritans: call 116 123, or email [email protected] You don't have to be suicidal to get in touch with them
    • SHOUT: text SHOUT to 85258 if you'd prefer to speak to a volunteer over text message
    Is your GP or therapist aware of the thoughts you've been having around not being able to continue on with this kind of pain?

    Are you currently experiencing any suicidal thoughts? You can contact us on [email protected] if you'd prefer to discuss this privately.
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  • Tegan
    Tegan Member Posts: 11 Listener
    Chased up GP yesterday nothing been done.

    mental health nurse was sent to do a home visit as I wasn’t coping with being disabled and the pain - was advised I needed medication and they would contact dr, but nothing. Told dr yesterday I was not sleeping, in pain 24/7 and can’t handle it - exact words were ‘that’s not good’ 

    emailed Samaritans - never heard back,

    had a text session with Shout, not helpful 

    Tried web session with Calm but never responded 

    just don’t see many options of life 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 11,025 Disability Gamechanger
    edited November 11
    Hi again @Tegan - I had hoped things were looking up for you when you heard your neurologist would send an addendum to their letter correcting the error about your mobility.
    It sounds like your GP is supportive, so I think you need to engage them again. This for a few reasons:
    1. I find it extraordinary that your neurologist has suggested you see a rheumatologist, & yet the rheumatologist whom your GP referred you to has declined to see you. Normally when one specialist suggests a referral to another, this will occur. So you need to ask your GP to refer you to another rheumatologist. Even if you'd seen one, you could ask for a 2nd opinion, so I can't see there should be any problems in getting another rheumatological opinion.
    2. You've previously mentioned that for transport needs to get to work, a diagnosis is needed with the Access to Work scheme. I've looked further into this, & this isn't the case. I found the staff guide about Access to Work, which says, about Travel to Work, that all new applications 'must also be supported by condition corroboration from a General Practitioner (GP) or suitably qualified medical practitioner or other relevant independent professional expert. They must confirm how the disability, illness or health condition affects the customer’s ability to travel to work.' As you will see 'diagnosis' isn't mentioned. Again, you're GP should be able to corroborate, & therefore help.
    3. Last, but certainly not least, all the stress you've been under with fairly recently becoming disabled, being as yet not diagnosed, & your difficulties with your employers, as I'm sure you know, won't have been helping either your pain levels, or mental health.
    I'm hoping that addressing the above first 2 points will indeed help reduce your stress, & make your pain more manageable; even things you've tried before may help once you've reduced the stress you're under, as stress increases pain, unfortunately. You have options, & I hope you try them. :)
    Edit: just to add, use your neurologist's opinion (with the addendum to their letter) to back up your GP's knowledge as to how your disability affects your ability to travel to work.
  • Ross_Scope
    Ross_Scope Posts: 5,416

    Scope community team

    Hello @Tegan

    Thanks for your reply, and I'm sorry to hear that you've found it difficult to access support. Have you considered following up with the mental health nurse about the medication they said you needed? How long ago was that?

    It's a shame that you've not been able to benefit from contacting places like Mind or Samaritans, perhaps in the case of Samaritans they will get back to you in due course. It seems as though you've tried text-based interactions with the three avenues of support that you mentioned there, have you considered giving them a call instead? I appreciate that talking isn't for everyone, but it could be useful for you to just have a chat with somebody about how you feel.

    It can be hard to find the motivation to keep going when it feels as though other people are letting you down, which appears to be how you are feeling at the moment. however it's important to remember that there are always other options out there in terms of receiving support. I am not sure if you have tried entering your postcode into Hub of Hope, to see if you can find some local support.
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