I'd like to set up a chronic pain support group — Scope | Disability forum
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I'd like to set up a chronic pain support group

Debs64 Member Posts: 1 Listener
Hi all!
Just a brief bit about my disabilities and myself! Up until 4 years ago I was always on the go, Racing around loving my job my life my everything really!! Then had holiday from hell - spent most of it on a drip, nasty virus, daughter (then aged 11 - abused by male nurse while I was receiving medication!) blah-de-blah-de-blah! Long and short of it is - I have (finally - this Jan received diagnosis of Fibromyalgia (prob brought on by aforementioned virus),Osteoarthritis in numerous joints, Cervical Stenosis and scoliosis of the spine! I lost the job I loved last July 2017 and have basically struggled and fought long and hard for assistance (financially, physically and emotionally) - and still am. I would really like to set up a support group for people like myself with any kind of Chronic pain - diagnosed or undiagnosed - with guest speakers who can guide and help people through, what was for me the worst ever time of my life (I truly would not wish what I have been through on ANYONE) and would like to make sure that NO-ONE should feel like they have to JUSTIFY themselves in the way I (and probably many others ) have had to. If anyone has any suggestions or can offer any assistance in Gloucestershire area I would be really grateful
Love and hugs to all


  • hartill77
    hartill77 Member Posts: 97 Courageous
    Hi Debs64
    Welcome to the community! 
    Sorry to hear what an awful time you've had.  I know someone who has Fibromyalgia and know how much she suffers too. 
    I hope you find the site useful! 
    Maybe set up a group on social media too.
    Im not in the Gloucestershire but happy to help if I can.
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @Debs64 Welcome pleased to meet you.

    Thank you for sharing your story.

    I wish you every success in creating a support group.

    Advice and information I hope you can find plenty on this forum.

    Lots of new friends.

    We are a friendly community who support each other

    Take care
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • atlas46
    atlas46 Member Posts: 826 Pioneering
    Hi Debs

    Sorry to hear about chronic pain, but a very warm welcome.

    Love your idea about setting up a support group..

    Might I suggest you check your local NHS, to see if they provide a pain management programme.  I am sure you would get some help to set your group up.

    They might help out with a venue.

    Try and speak to the Programme Leader or Clinical Lead.

    Let us know if you need any further info.

    Best wishes


  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Hi @debs64, welcome to the community! You've had some great suggestions already, and you may also want to look into whether there are any local grants/funds available in your area. I found this page on finance funding on Gloucestershire which may be a good starting place!
  • mossycow
    mossycow Member Posts: 487 Pioneering
    Hi there! Thanks for sharing your story @Debs64

    I absolutely share your desire for local support group. I've been looking into what is possible up here in the North East England.... But its really hard. 

    I have found some excellent Facebook groups though. Some are for chronic pain and I'm in a fantastic group for wheelchair access in my local Town.

    It's just been too hard to get people together in real life. Though I do keep meeting loads of wheelchair users... Would love to get us all together! 

    I have a daughter too. It can feel hard parenting with chronic pain.... How's that going? I'd really recommend getting in touch with Young Carers near you as we found them to be great support.

    I really love your idea and if I lived nearer I'd be interested... So go for it! 

  • Sophiecat
    Sophiecat Member Posts: 4 Listener
    Hi @Debs64 :) I’m in your area and founded a national support group for a pain condition. Would be happy to help! You sound like you were like I was too - always active and positive. It’s hard when that changes and it’s good to focus on helping those like you who are struggling with a whole new world.

  • Tarnia
    Tarnia Member Posts: 27 Connected
    Hi @Debs64. Thank you for sharing your story as I can really empathize/relate to what you must be going through, as my story is very much similar.
    I have to say that I admire your courage and ambition in using your experience to help yourself and others... Again, I understand that struggle of trying to fix together all that's left.
    Life changes, emotional, mental and physical pain are all so vicious. Yet your strength in trying to break that cycle is truly inspiring.
    Although I don't come from your area, I wish you all the best with your plans.
    There's been some great ideas already posted. Good luck.
    Kindness to all.
  • ClaireSaul
    ClaireSaul Member Posts: 92 Pioneering
    Hi @Debs64 - Great to meet you and many apologies for not responding sooner (massive flare myself over last month).  You sound very much like a kindred spirit - I started blogging when I had a spinal cord stimulator implanted and became active in online community (including here most recently) for exactly the same reasons!  I am also an ex nurse with a medical background in pain management, so really wanted to help others - I have also found the support I have received in return invaluable.  (I have Ehlers Danlos, spinal probs, numerous dislocations and other related conditions & prob fibro but undiagnosed).  
    How are you getting on with setting up your group? Can I help?  I would be very happy to visit and be a speaker!
    Best wishes,
    Claire Saul
    Chronic Pain Advisor
    [email protected]
  • Ritzy
    Ritzy Member Posts: 36 Courageous
    Hi @Debs64  I'm wondering how you are getting on setting up a support group?  I was thinking of setting one up myself, last year.  But I was talked out of it as people were saying it would be too much for me.  But I think that some times ordinary people, just like members using this website get together and share there stories, and it helps.  Often there is no cure for what we have but just talking helps.  So please let me know how you are getting on, and it might inspire me to do something over here in the Wolverhampton area of the  West Midlands.  Love to you all.  Positive thinking. 
    Ritzy x
  • Misscleo
    Misscleo Member Posts: 647 Pioneering
    Good idea count me in please
  • Ritzy
    Ritzy Member Posts: 36 Courageous
    Hello #Misscleo do you live in the Wolverhampton area?


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