how to I cope?

hen08
hen08 Member Posts: 8
Hi
I''m just 50, was diagnosed 18months ago with a step out at c6 & 7, since then after mri scans i have been told i have arthritis every where. In my neck,spine,shoulders,hips,knees and elbows. So walking, bending, moving everything is painful.
I have been to pain clinic, been told that because i have reaction to pain relief there is nothing they can give me to help.
Sleep i just don't get as can't lay down for more than 23 minutes without getting cramp and pins and needles.
At pain clinic was told to follow the pain toolkit, which I would love to do but as can't walk more than 20 metres with aides, and can't get myself dressed or undressed as can't bend, can't garden as can't bend, can't even do my fishing anymore as can't sit for long enough or lift the fish or cast my rod.
Gone from being a very active person who could do everything and anything to not being able to do anything as riddled with pain 24hrs a day.
So ANY advice would be great.I have no drugs at all of any sort but i am getting more and more depressed as no one can give advice that is relevant. At moment I am frustrated with the lack of help that I seem able to access

Comments

  • helpline_team
    helpline_team Posts: 2,339
    edited 30. Nov -1, 00:00
    Hi Hen08
    Many thanks for your posting. I’m sorry to hear that you are riddled with pain 24hours a day and that your sleep has been affected with cramp and pins and needles.
    The constant pain you describe coupled with lack of sleep can be so debilitating and challenging.
    It can be so very difficult going from a person who was very active, to now as you say not being able to do anything. You say that you now can’t get yourself dressed or undressed, can’t garden or even do your fishing. It sounds as though you really enjoyed your fishing, so life sounds very different for you now and managing that can be fraught at times.

    I am wondering if you’ve had an assessment in your home from an Occupational therapist, he/she can help with the difficulties you may be encountering at home. Your GP would be able to put you in touch with an OT. I am also wondering if you have had any physiotherapy, once again this is something you could talk to your GP about and may be helpful to you.

    We are not medically trained on the Helplines and are unable to offer individual medical advice. You say that you feel frustrated with the lack of help that you are able to access, and that in itself can be so trying when we’re pain free and even more so when we are in pain.

    You go on to say that you are ‘getting more and more depressed’ and I wonder if you would like to give us a ring on our Freephone Helplines 0808 800 4050 (Monday-Friday 10-4) here we can talk informally and in confidence, sometimes a non-judgmental and listening ear can be helpful.


    The link below will take you to Arthritis Care publication ‘Coping with pain’. Here you will find information about the different ways to manage pain that may be helpful: http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Booklets/main_content/Copingwithpainbooklet2013.pdf
    I am making an assumption that you have Osteoarthritis, if I am correct this is largely self-managed with diet and exercise, aside from medication from your GP.

    Within the link below you will find information about the self-management of arthritis. If you have a different type please let us know so that we can give you more appropriate information
    http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype

    I do hope this has been of some help, and once again please give us a ring if you would like to talk to one of the Helplines team.

    Best wishes
    Lynda
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    Hello Hen08
    I'm not one of the Helpline Team,just one of the forum users, but wanted to say how sorry I am you find yourself in this miserable situation. The pain clinic outcome sounds very unhelpful, and I'm not surprised you're feeling depressed. You say you have reactions to pain relief - does this mean that there are no drugs that you can use? Were you given any suggestions about non-drug methods, such as heat /ice packs? It would be worth going to your GP to discuss this and push for some help - treating the depression might be one way forward. Also I would suggest you post on the Living with Arthritis forum - you'll get lots of support and suggestions from folks who are there, doing that, and struggling to get the T-shirt on!( to rework the old saying)
  • hen08
    hen08 Member Posts: 8
    edited 30. Nov -1, 00:00
    thanks for the advice,
    I use heat and cold packs all the time, but the relief is only short term,not long enough to get anything achieved.
    I was told by pain clinic that all pain relief drugs contain codine/ paracetamol so they will not try another. To be given a prescription to go to a meeting with health care professionals, whom I am not allowed to ask personnel questions or advice then to try and sit in seat for an hour sounds like an exercise in torture to me.
    But after our chat yesterday awaiting info and appointment with different GP , so fingers crossed