Any Advice

Majii Member Posts: 1
edited 26. Feb 2020, 23:33 in Chat to our Helpline Team
I have had Ostio Arthritis and cervical spondylitis for years but in last year it’s unbearable. I get no sympathy or support from medical professionals.
I keep falling down but PIP decide I don’t and Neurologist I waited two years to see said the issues of falling and excruciating pain radiating from my neck into my brain don’t happen often enough to be of concern (five times in three months) - I fall up and down stairs a lot and recently had a very bad fall down some escalators which led to an X-ray that showed severe degeneration of every disc in my spine (I knew L1-L5 and C4-C7 were an issue and now wonder how many discs do I have and what can be done. I also have inflammatory arthritis and my hands are bad with two badly deformed fingers but X-ray showed rheumatoid arthritis and I am referred back to rheumatology who discharged me in 2016 as they planned to fit me with a tens machine for back pain and sciatica but couldn’t as I have stage 4 neuoendocrine cancer! The last four years I have had some very major cancer surgeries and problems so arthritis got pushed into background! I also now have severe lower back pain and pain in my perineal area that flares up when I stand still and can make me faint at times - is this related to arthritis? And the neck and brain pain I assume is nerve pain at first I thought it was a stroke it is like cold icy fingers squeezing my brain and lockjaw all in one so extremely painful - a brain scan showed two seven cm lesions on left frontal lobe and I have more white matter than one would expect in a brain of someone my age but no one seems to care or want to investigate further. A OT assessment stated I can do my own shopping, cleaning, laundry and gardening which is absolutely untrue as was PIP assessment that I can walk without incident - I fall sideways rising from a siting position or when standing and moving into sitting I can fall back abruptly (I used to use my hands for stability but they are useless) when standing or if I bend I often get stuck in a bent position that can at times last weeks! Can anyone tell me who would be my best person to approach? My GP said he couldn’t understand why I was worried about a finger when I had cancer in my liver and pancreas to be dealing with - but my finger can often hurt and my arthritis very often hurts way more than the cancer! I will bump my hands and fingers on doors when opening them or trying to use grab rails (OT said I need grab rails but I can’t always grab or hold things with my hands)
Or I catch my finger when putting on clothes or put pressure on finger when I make food or hold food/cups to eat and it literally feels like fingers especially deformed ones are being broken into shreds. I also have a push button on toilet which is unbearable to use (I use a bottle as can’t use fingers to push the flush)
I take pain medication and use pain gels as well as splints but the splints feel too big for my hands! My GP told me buy my own orthotic shoe inserts and specialist equipment for kitchen (but even these are difficult for me to use now)
How do you guys cope and where do you get support from medically?
I asked for a social services assessment who said OT does not recommend I need one!
Because of cancer medication and resection of pancrease I am now diabetic so need to walk to reduce blood sugars that can spike due to medication I use and want a walking aid like a stick that you can sit on when needed - should my GP prescribe this or do I need another OT assessment and they provide it.
The local authority were contacted in 2016 regarding my issues relating to resection of bowel for cancer necessitating use of toilet urgently and frequently but the authority simply gave me a commode to use if I was unable to get upstairs to bathroom (they put two grab rails in as aid to get me upstairs so how do I carry commode bucket to empty it)
Any advice or directions to any support that you could recommend as helpful would be very much appreciated
I fell so disgusting and pathetic
I live in North London


  • Mike1
    Mike1 Member Posts: 1,992

    Eeeek! The only thing I can suggest is that you see a different GP as soon as possible, rather than trying to remember everything when you get an appointment write it down and take it with you. Good luck!