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Hi, my name is Bell11!

Bell11Bell11 Member Posts: 24 Connected
Hi. I am new to this. Only diagnosed two days ago 


  • serenity2serenity2 Member Posts: 206 Pioneering
    hi @Bell11

    welcome to you !
    im glad you found us here.
    i find it helps me to write things down, and I don’t feel quite as on my own, having here to come along to..

    hope you find it helpful here 
    Best Wishes
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Bell11

    Welcome to our online community/family 😃

    I am one of a team of Community Champion’s here at Scope 😀

    Please please have a good look around & please let me know if there’s anything that I can help you with 😃

  • chiariedschiarieds Community Co-Production Group Posts: 8,025 Disability Gamechanger
    Hi @Bell11 - Welcome to this friendly community. Thank you for joining & saying about yourself. How are you feeling since you got your diagnosis? :)
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Bell11

    How are you doing with your “Diagnosis”

  • janer1967janer1967 Member Posts: 9,225 Disability Gamechanger
    Hi @Bell11 Welcome to the community great to have you join us. Have a look round and join in any discussions.

    I would imagine you are feeling a bit overwhelmed at present, we are here to help and support
  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    Hello @Bell11 welcome to the community. It must be such a tough time for you at the moment. Know that the community is here whenever you need our support. Please let me know if you need anything or have any questions. We’re all happy to help.
  • Bell11Bell11 Member Posts: 24 Connected
    Thanks every one for such a warm welcome. I understand the medical side of it to a point. Basically my brain interprets pain at a higher level than some others.  I'm just not sure what to do with it all. I have quite a bit of ostioauthritus in hip neck back and knee so I was on some strong pain killers and other stuff. The lovely doctor o saw changed them at diagnosis to a stronger one.  And asked me to keep a diary of bad days so I can try and get to grips on what makes me hurt more. ( Mine I very much pain based) He suggested finding a group to learn as much as I could. And finding some exercise that suited me. He said I seem to have some traits towards ME and CFS. Again roughly ok with he medical means tired and some people get exhausted. I'm lost on what I can and cant try... I'm a bit of a strong minded opinionated person (stubborn and pig headed I'm told by my other half). I have had to be to get things done. I'm now with a wonderful man who will help me with anything and every thing... I never like to ask for help. I found that over the last 6 months I've had to ask for more and more help. I will even cause my self pain to do things myself as I dont want to feel like a burden or a failer. It wont control me I will control it,,, yeah right how stupid am I. Did way to much round blackpool Friday, and yesterday I could barely move any part of me..  
     help please.

    Hope this wasnt to much to soon 
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Bell11

    Good Morning please don’t worry about the length of your post’s that’s what we are all here for.

    Yes I am on some very strong meds for my Pain & currently I’m on max levels on all off them.

    The doc’s have told me that I only have one treatment left & the NHS won’t Fund it so I am “Snookered”

    How is your “Pain Today”

  • Bell11Bell11 Member Posts: 24 Connected
    Hi Steve. Stiff as normal first thing in a morning. Not a normal week for me this week, I have a week off work "woop woop  :D.   Pain doesnt seen to bad at moment more like a dull ache. But still enjoying my coffee.. had a lie in as I'm normal up 5.30am to 6am for the work ahead... 
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Bell11

    Good Morning!!!!!!!

    Yes I am up just after 7am as normal & I have had my meds.

    They don’t make much difference but I can’t tolerate any stronger ones.

    Yes just had my 1st “cappuccino” off the day “Lovely”


  • Bell11Bell11 Member Posts: 24 Connected
    Lol.. cant manage with out to coffee infusions either.. I take pregabalin and co-dydramol for the pain.. as I say only just started taking the pregabs. Was on gabapentin,, helped a little but was just told to take more through the day.... spaced out alot.. cant afford that in my line of work. Hope your pain is good for you today and well behaved. I call mine Harry and George. Harry is my left side and George is my right. I some what feel giving them a name I can shout at some one rather than the pain... stupid I know. Lol 😁
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Bell11

    Yes I am on Pregaline, Oxcarbazapin, Amantadine, Amitriptiline, Morphine Patches.

    I was also on Gabapentin for sometime as well.

     I call mine “Gordon & Ben-it” & something different if it gets “Bad”

    Mine cause’s me a “Pain in the Neck” which is something that I have been told for sometime.


  • Bell11Bell11 Member Posts: 24 Connected
     :D love the names... I have neck pain MRI says ostio. But to be honest I think Fybro as to how it feels. It so refreshing to speak to people who understand and not make me feel I'm going mad cause it's all in my head xx
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Bell11

    Many thanks yes I did have other names in the beginning (2005)

    But I wouldn’t be able to let anyone know about them to be honest.

    My (SRS) surgery caused it instantly as the (Radiation) hit the top off my neck then spread into my (Brain)

    The (Radiation) continued into my (Brain) causing (Damage) until it worn out.

    I had to wait 3yrs pre surgery to find out that it hadn’t worked.

    Never mind it was another experience for my ongoing “patient journey”


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