Facing a brick wall on every direction I turn for help

Brenda689
Brenda689 Member Posts: 3
edited 23. Feb 2019, 03:03 in Living with arthritis
I currently went off work.back in 2011 mri confirmed Degenerative disc disease lumbar spine refered to pain management. After year wait spinal injections and again after a year or so more spinal injections however these spinal injections gave no relief.. I search for UK clinical trails to participate they required an up to date MRI which showed condition had deteriorated badly and that I now had 2 slipped discs and 1 herninated disc professor after consultation with me stated in on borderline for surgery.
The clinical trial didn't go ahead as I didn't meet the merits for the trial. Professor now wants to try Denervation on lumbar spine I waited 2.5yrs for my last treatment and my condition is deteriorated so much now I have left leg femerol constant leg / Deep groin pain. I. On a concoction off drugs pregablin mst morphine severdol morphine while I wait on yet another nhs waiting list. I feel angry that while I wait I am getting worse pain is at its highest gp can't prescribe anything else but she will try writing a letter to pain clinic to speed them up to see me....I'm not waiting 2.5 yrs again! Why if I am border line for surgery can't I go private and nhs pay for trestment because my condition is getting worse while I wait on waiting list after waiting list
A&E I've been to them several times 're femerol nerve pain that is constant on left leg and deep in groin
What do I do Wait and get worse
I also have other medical conditions fibromyalgia ibs asthma and suffer chronic migraines I'm on 11 prescribed medicines daily I feel I am being left alone Waiting waiting sorry for long post but I'm faced with brick wall daily A&E can't help GP no more avail drugs to try as we have exhausted all and I'm the last resort morphine Any advice fellow suffers on what I can do next I just feel I'm sailing a ship on my own

Comments

  • moderator
    moderator Moderator Posts: 4,085
    edited 30. Nov -1, 00:00
    Hello Brenda
    I can certainly hear that you have been having a painful time for a few years and that you a rightly feeling frustrated with the lack of progress in your treatment and any sense of what to do next. This is a very difficult situation to live with. First off is there anyway you could get some support from someone else to come with you to your appointments and support you. It is extremely hard to live with this much pain and try to negotiate a treatment plan.
    Also you might find it useful to speak to our Helpline team who aare extremely skilled at helping to pick apart a situation in order to look at options.
    Our amazing members are also bound to have some suggestions for you. It might also be a good idea to keep a daily diary of your pain and how your life is restricted as this is all good evidence to give to your professor. This booklet is very useful to keep a record https://www.arthritiscare.org.uk/assets/000/001/207/my-plan-for-life-with-as_original.pdf
    Please keep us up to date with how you are getting on. We are here to listen and support you
    Best Wishes
    Sharon
  • stickywicket
    stickywicket Member Posts: 26,248
    edited 30. Nov -1, 00:00
    Hello. I'm sorry you're in so much daily pain and have been for so long. I have RA and OA and, though my back is generally good, I do understand about pain as I've had it for a long time.

    I think our webmanager Sharon's idea of calling our Helpline team is a good one as, so often, even when we think there is nothing more to be said or done, someone else can see a slightly different angle or take on a situation.

    It's a shame about the spinal injections but, so often, these things fail to help even when they have done so previously. It 's a bit of a lottery.

    You are, indeed, on a lot of meds. Unfortunately, quite a few of us are on here so you've come to the right place. I don't quite understand the “ A&E can't help GP no more avail drugs to try as we have exhausted all and I'm the last resort morphine” thing though. Recently, when a lump of cement came loose from my hip replacement and lodged somewhere extremely sensitive, morphine did nothing for me and I was given synthetic opioids which are considerably stronger. They did, indeed, sort out the pain but, while I was on them, I was living a sort of half life as I was asleep for about 18 hours a day. Not good and probably, if I hadn't got off them, I'd have started to tolerate them and so needed ever stronger doses.

    Have you tried physio which is recommended by the NHS?
    https://www.nhs.uk/conditions/slipped-disc/ Slipped disk is herniated or prolapsed disk. Many of us on here find it invaluable for all sorts of arthritis.

    The long waits can be excruciating and scary. Unfortunately, that's the current state of the NHS. I can see why they wouldn't refer you to a private surgeon, though as, if they did that for one patient, they'd have to do it for all. Sometimes, however, the waiting can be due to clerical error rather than a long list. Could your health centre ring to check where you are on the list and how long a wait is expected? Mine were absolutely brilliant recently in that respect. One week I was about 35th on the list and next week I had an appointment. Not for an operation: just to see an orthopaedic surgeon.

    I'd certainly try that but also, given that waiting seems inevitable, I'd be looking to see what I could do to improve my situation in the meantime. Pills don't seem to be helping much. Have you tried physio, a different mattress, different chairs? (Sometimes I find a hard dining chair can be more comfy than my nice recliner.)

    Have a chat with our Helpline people and maybe this NHS info on spinal problems, including yours, might help.
    http://www.ipswichhospital.nhs.uk/spinal_unit/spinal-conditions.htm
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I am sorry you have had to find us. I will shortly be starting my 22nd year of arthritis and, like everyone on here, can empathise with the issue of pain. I have around forty affected joints, some have psoriatic arthritis, some osteoarthritis and others both kinds. I began when I was 37 and will soon be 60 so that means I have been arthritic for a third of my life - deep joy. :lol: I was born with auto-immune issues so the psoriatic arthritis was not a surprise, the osteo, however, was. I was refused new knees when I was 52 because I was too young and now won't bother as everything else is so much worse.

    There are around ten million people in the UK with arthritis, the majority of whom have osteo and I think it being so common works against it. As a disease it lacks glamour or urgency, it is seen very much as being just one of those things. For those who do not have it on a widespread basis it can be sorted, eventually, but for those who do it more thoroughly it's a very different story. With an ever-increasing and ageing population the demands on the NHS are excessive and the money finite, especially as more and more conditions which are not illnesses are being funded due to people demanding their 'rights'.

    Pain is constant and on-going and will be until the day I breathe my last. I know from experience that the big guns do not remove the pain from me, just me from the pain: personally I prefer to be able to function with a clear head, being able to do more distracts me from the pain and reduces my perception of it. I usually take four 30/500 cocodamol per day, this dulls a sufficient edge for me to get on and leaves me room to take more of something such as paracetamol should I need. It also means I can benefit in the really times from tramadol etc. because my body is not accustomed to them so I notice the difference.

    I hope you find the forum to be of interest, we all get it because we've all got it, and understand the frustrations of trying to deal with a system which is unable to deal with us as we would like. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mummybear53
    Mummybear53 Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi
    I have only just joined this site but the help given to me was really great so I thought I’d at least pass on some support. I’ve got OA in my lower spine and hips and have had one hip done and am waiting for the second. I also have muscle problems as I take Letrozole for post breast cancer medication and that gives me muscle pain. I must admit I find pain relief not that effective but get through my day on a combination of paracetamol, meptid ( a codeine type) and ibuprofen. It’s not how I would wish to be but, hey ho.
    What I do find helps is Pilates. It builds up core strength and does get my joints moving. Also recommended was getting in a pool and walking through the shallow end. Again it helps build up muscle tone. Apologies if you’ve already gone down this route.
    Sorry you’re having such a rough time.
    Anne
    xx