Dealing with chronic pain
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Guys and St Thomas pain unit experience?

reenieglenreenieglen Member Posts: 4 Listener
edited January 2020 in Dealing with chronic pain
I’ve had chronic pain for about 15 years as a result of having scoliosis and having a spinal fusion about 17 years ago. I’ve tried all sorts and am now looking in to the pain unit at Guys and St Thomas. Has anyone been and found them helpful? I’m looking more for help with managing the pain and finding ways to cope day to day rather than medical intervention. Thanks!

Replies

  • chiariedschiarieds Community Co-Production Group Posts: 8,013 Disability Gamechanger
    edited January 2020
    Hi @reenieglen Welcome to this great community, & thank you for joining. I'm sorry I don't know about the pain unit at Guy's & St Thomas', but do use their resource fairly often for explaining about diaphragmatic breathing which can help with managing pain. Just to explain, I'm a physio, tho qualified a long time ago, & used to teach this breathing as a relaxation exercise. See: https://www.guysandstthomas.nhs.uk/resources/patient-information/therapies/abdominal-breathing.pdf
    Other ways to cope with chronic pain, which I also have, may include gentle exercise; visualisations, which I use with the above-mentioned diaphragmatic breathing; distraction & mindfulness, & more!
    As we're all different, it's a matter of working out what what may work for you, & is sometimes a combination of different modalities.
    Please also see this recent thread with info & advice from a couple of knowledgeable members (EmmaB & thespiceman): https://community.scope.org.uk/discussion/68027/does-anyone-here-have-bad-anxiety-that-keeps-you-awake-at-night#latest & perhaps look too at the links EmmaB provided. I've just watched them this evening.
    I hope some of this may help you cope with your daily pain.
    This is a very supportive community, & there's usually someone here to talk with. Please do chat here any time.




  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @reenieglen and a very warm welcome to the community, how are you doing?
    Community Partner
    Scope

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  • ClaireSaulClaireSaul Member Posts: 92 Pioneering
    Hello @reenieglen (just copied this over from the message you left me) -  so sorry that you are in this position. I'm not sure if you have read my background, but I also had a couple of spinal fusions which left me with worse chronic pain and it was on the back of this that I was referred to Guys and St Thomas'. They have several different pain programmes - but initially you will be assessed by a consultant and a pain psychologist to find the right path for you. In my case it was the pain course with a view to having a spinal cord stimulator implant. The different routes will all put you in touch with specialist nurses, occupational therapists, clinical psychologists and other patients, and will give you coping strategies. With regards to a blue badge, it is definitely worth applying and telling them about how your pain affects your mobility on your worst day. Contact your local council for details and come back to us if you need any more help.
    My own children were all still at primary school when I was disabled from work so I understand how difficult it is - I learnt to accept help and not to be afraid to ask for help, particularly from other mums at the schoolgate.
    Sending you very best wishes.
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • reenieglenreenieglen Member Posts: 4 Listener

    Hi everyone, thanks so much for your replies. I’m going to try see a consultant at Guys and St Thomas although I’m worried about getting there and back and then managing the extra pain after but hopefully it will be worth it!

    @ClaireSaul- I’m trying to get better at asking for and accepting help with the kids but it’s hard! I find the time from after school the most difficult. I feel guilty sticking them in front of tv/iPad but it’s often what I need to do...I’m going to apply for a blue badge thanks for the advice!

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