disabilities and symptoms x

hello i really need to advice i dont know where to go and who to see.i have scoliosis and everytime i see anyone its always put down to that where i feel it may be something else? ive seen the fibro information and i have pain and stiffness in all the places it says i dont know where i would go to be tested ? .i have extreemly painful joints my fingers and hands blow up and also my feet especially the right one as at the moment i cannot walk without crutches and have a wheelchair. i went for my first appointment with a spinal registrar and he had nothing about me no details. i have been in hospital for 2 weeks after a fall as i was getting weaker with the pain im on morphine,tramadol 200mg,amitrypiline,diazapan,gabapentin, tramadol 50mg,diclofenac.morphine tablets and oral morhine.ive been taking these for a long time apart from the mophine thats been recent over last 8 weeks or so.I apologise if i am craming alot of information and i am happy to explain anything more but does anyone think it is worth e claiming any benefits ? or do i need to wait further , my scoliosis has been horrifc pain over last 3 years and i have been on so much medication it has really changed my life.after my fall now i have handles for the toilet a hightent seat,bars to help me lift up,an extra bannister to help me get to bed and i am trying to find a better wheelchair as the one they have me is very heavy and uncomfortable so i cannot even be taken out.i cannot make any meals i have help dressing and washing, i have a special seat over the bath then i can shower sat down, if anyone can see if i can claim anyhelp or if my husband can claim carers as he looks after me before work and after and all through the night if i need turning or need some morhine.many thanks for reading and once again sorry if it is a little messed but i am just not very happy with the way i feel in such pain and all my family are so upset wathing me too. ty nicola xx

2 Replies

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  • My poor dear, you are suffering aren't you. I'd like to help you, but first know that you are not alone. You will get others answering you here too. A little suggestion to help you get answers: Try to look over your messages through when you have finished and before you send and break them up a bit as it is difficult to read. No problem with the amount at all, and I meant that as a kindness not to be critical.

    Now, have you seen Social Services and been assessed for support at home? It sounds as if you have as you have a lot of equipment, but if you need anything more, they should be able to help you.

    It seems as if you have been involved in the hospital quite a bit, but you don't mention your own doctor? The reason I ask is that he or she can refer you to see a rheumatologist who can give you a diagnosis. The NHS can also provide you with a wheelchair, but you have to ask your doctor for anything you need as he has to refer you. I didn't know and bought one! The doctor can also refer you to a Pain Management Group, a Physiotherapist and for Hydro Therapy!

    Have you applied for Disability Living Allowance? Type it into Google or any search engine and it should come up. They need you to fill in paperwork which you can do online or on paper but you need to ask. It is a long and tedious process and the more information you can provide the better. Back it up with anything you can, get support from Citizens Advice in filling in the form. I get the mobility support at the moment, but they are in the process of changing things.

    I hope this has been helpful. I am afraid I have written a lot too!

    Take care of yourself

    Soft hugs

  • Nicola, I agree with everything Sarah Jane has suggested. Your GP is the 'gateway' to most of the support you need and you really should apply for benefits too, the application can be a long process. It sounds like you need a more accurate diagnosis too. Be strong and ask, sending hug.

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