Pain — Scope | Disability forum
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RachelLouise1986 Member Posts: 6 Listener
edited March 2019 in Cerebral palsy
I have straightening of the spine they r trying to take me off my pain meds as if new law so they say but if I don't have my meds I can't even get out of bed because the pain is that bad can't walk not even to get to the loo can u think of anything I can do I am so worried even with the meds I can do some little things only just if u can think of anything that would be great 


  • Snowbelle
    Snowbelle Member Posts: 43 Courageous
    Hi RachelLouise,

    That sounds so tough.  I would go back to your doctor and explain the difficulties that you are having.  Sometimes pain meds can stop being effective, and you get all the side effects without the benefits - so in case your GP is wondering if this is the case for you, it might help to explain what you are like on and off your pain medications.  Is there someone who knows you or lives with you who could come with you to vouch for what you're saying. 
    If you are struggling with getting to the loo make sure your GP knows this & ask them if they could refer you to Occupational Therapy and/or Social services to help you manage.

    Other options to explore: Are there any local pain management courses/ groups in your area - they might help to find ways to manage or lessen or cope with the pain.  Also looking into any alternatives like heat&ice or TENS machines, or herbal rubs to see whether they can lessen the pain for you slightly at all.
    Have you had physiotherapy before?  Has it been useful?  Might be worth asking for a referral/rereferral for that.

    I hope your doctor is sympathetic and able to suggest something that will help.

  • Antonia_Alumni
    Antonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Hi @RachelLouise1986 thank you for sharing this with us. How are you doing today? @Snowbelle has offered great suggestions. Please do keep us updated on it goes, especially with your GP. If you have any questions, please let us know.
  • RachelLouise1986
    RachelLouise1986 Member Posts: 6 Listener
    Snowbelle thank you for reply to me every thing u have suggested has been done and my partner that looks after me has been with me to all the appointments that I have for pain my body never responds to any treatment it's got to the point I just don't know what else I can do and my pain meds do work the doctors know this it's just a new law where everyone is affected and if other people have not had same problem yet they soon will by law so my doctors says everyone will have no pain meds soon
  • RachelLouise1986
    RachelLouise1986 Member Posts: 6 Listener
    Antonia thank you for asking how I am to day in pain as all way and covering myself with heat rub should help me feel a bit better 
  • Snowbelle
    Snowbelle Member Posts: 43 Courageous
    Hi @RachelLouise,
    Sorry, you're still in so much pain.  Is it a particular type of pain medication that is being stopped e.g. opiods, tricyclic antidepressants, medications for nerve pain.  Could you ask the GP whether it's possible to switch from the type of pain medication being stopped to a new type which is still allowed.

    Another couple of ideas which might help:
    - Mindfulness has been found to reduce pain levels in people with chronic pain.  There's a book by Jon Kabat-Zinn called 'Full Catastrophe Living' which goes through the Mindfulness-based Stress Reduction course which is the one that has been shown to help pain.  Or there might be a course running near you.
    - Low Dose Naltrexone, used off-license for a range of medical conditions & it might help with pain.  The only difficulty if that you can't take it with any opiod medications, but if your pain medication is being stopped then I'm guessing you wouldn't be left on any.  You can get more information at http://https//  There is information of there on how to find a doctor (can do online consultation) who will assess if it's an option for you.  If you are then you need to get it on private prescription £20-£30per month including delivery.

    Really hope that you can find something that will help you.
  • RachelLouise1986
    RachelLouise1986 Member Posts: 6 Listener
    I am on an anti antidepressant for pain on top of tramadol and all so on it for sleep as I find it hard to sleep because of other problem I will b having a pain med review in April to c if they can give me anything else but they think psychology will work but it will not as the doctors think I have adhd and that is y psychology is not working as been referred over 7 times to the point they will not even c me anymore I am all ways getting knock from pillow to post and have been doing for over 10 years it tock 2 years just to find out what was wrong with my back and it is non operable so the only way to help is by meds 


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