how do I cope? and what way forward is there?

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hen08
hen08 Member Posts: 8
edited 11. Jun 2014, 13:40 in Living with Arthritis archive
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

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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello Hen08, what type of arthritis do you have? Is it osteo or an auto-immune kind? I have a creaky foot in both camps but am fortunate in that I can take meds (not that they do that much, after eighteen years of this malarkey I am used to the pain so keep the pain relief to the minimum). I am reliant on walking aids but can manage to take care of myself, as I said being used to the pain helps and I have altered how I do many things so that I can cope better with the challenges of ordinary living (they seem overwhelming at times, don't they?)

    I recently attended a pain clinic and found it useless, they told me what I already know but you are in a different situation. I know this sounds a little New-Agey but what about distraction techniques and meditation? Diverting one's attention from the pain does 'lessen' it, I use distraction all the time and it helps matters. During the day distraction involves listening to the radio, watching telly, doing puzzles such as logic ones and crosswords, during the night I have my Kindle paperwhite (so I don't disturb the spouse) and I create alphabet lists, last night's was a good one, English and Scottish footy teams (Scottish because Q was solved by Queen of the South :wink: ) Life will carry on because that is what it does, we have to discover our personal solutions to the problems it creates. I take a regular low dose of an anti-depressant because that helps me cope better with the pain, would you consider that as an option? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Kittkat
    Kittkat Member Posts: 309
    edited 30. Nov -1, 00:00
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    Hi there. Can't offer much advice. I have arthritis everywhere and don't take pain relief even though have constant pain to be honest I am used to it. If you have the inflammatory kind maybe more drugs are needed.
    If not distraction methods are good as DD said favourite film, book etc.
    How am I gonna be an optimist about this?
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    Hello hen08 and welcome from me too. I do understand the 'everything is painful' thing as I've had RA for 50+ years and OA for much of that time. I can't, off-hand, think of a joint in which I don't have it other than the replaced knees and hips though my back is good apart from the neck.
    It must be very difficult to adjust from being a very active person. No wonder you're depressed, especially if you can't do pain meds though I've never liked to take much pain relief so I keep mine to an absolute minimum. Having said that, it is, for me, an option when needed and I wouldn't like to be without it. You mention being unable to take codeine or paracetamol. What about NSAIDS (Non-steroidal Anti-Inflammatory Drugs) To the best of my knowledge these don't contain either and are widely used to treat arthritis. http://www.nhs.uk/Conditions/Anti-inflammatories-non-steroidal/Pages/Introduction.aspx

    How do you manage for dressing / undressing etc? Do you have a husband / wife / partner who helps? I have a range of dressing aids and couldn't manage without them though I do have to ensure I buy clothes that I can 'cope with'. You'll find a lot of helpful devices in any Disability Aids shop both 'real' and 'virtual'.
    Not being mobile is a self-perpetuating thing and brings more problems in its wake so anything you can do to increase your mobility will help. I do basic exercises every day and I'm sure I'd be in a bad way without them. Have you ever been referred for physio? Exercise keeps muscles strong. Strong muscles support the joints and so the joints hurt less. You can find some here under 'self-management' http://www.arthritiscare.org.uk/PublicationsandResources/Listedbysubject
    I hope this will help.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello again, how are things today? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • hen08
    hen08 Member Posts: 8
    edited 30. Nov -1, 00:00
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    well, had a busy day saturday reading all the lovely info arthritis care sent me, so head was swimming with ideas, thought that with having worn myself out reading would get a good night sleep, no chance so gave up at 7am got up, since then had nothing but pain, thus making this weeks sleep total 4 hrs.
    So roll on tomorrow when i can get on the phone to organize some of the ideas AC suggest.
    so on hottest day of ever covered in heat patches :lol:
    But thank you all for the tips and advice.
    Hubby says cheers as well,
    helen
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Pain is a fact of our lives. Nothing we do gets rid of it completely and it always returns so we have to learn to live with it. I don't sleep well or deeply any more but I do what I can to make myself as comfortable as possible. I am a side-sleeper and sleep with a pillow between my legs to keep my upper hip raised and to cushion the knees and ankles. I wake every 90 minutes or so but I can soon distract myself back to sleep. Like many on here I go to bed tired and wake up tired, and I may nap during the day if needed - I listen to my body and do my best to give it what it needs.

    Arthritis itself is tiring - it takes it toll not only on our bodies but on our emotions and feelings. Have a read through the Ideas to Make Life Easier thread on the top of this board, it's where we post our solutions to problems and you may find some practical help there. We are all affected by arthritis but are differently affected, my OA will be different to yours but the end result is the same: pain. We all understand that. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    In normal life (Whateve that might be :lol: ) pain is a useful device which tells us when something is wrong and needs attention to make it right. In arthritic life pain is of no use at all. We know something is wrong but it's not going to be made right short of surgery.

    The pain is something we have to learn to live with, each finding our own tolerance level. Having found it, I believe in ignoring the pain as much as possible. Concentrating on it only magnifies it.

    Things which can help (eg exercises) can also be painful themselves at least at first. Some of the pain is emotional, the accepting that life has changed and, now that we are joined in unholy deadlock with this beast called arthritis, our lives must change too. Many of the old pleasures (and some of what we formerly regarded as essentials) are gone for good, some can still be enjoyed in a modified way but others, formerly not considered, are still available to be discovered and explored.

    When things are important, rather than saying 'I can't do this' ask yourself 'How can I do this?' Often there is a different way albeit not an ideal one. We are a very inventive lot. There are ways round many things but others have to go for good and not be constantly mourned. The things we refuse to let go of are the things that will drag us down into the depths. (I think I'm going Buddhist :lol: )

    I hope you enjoy reading the leaflets and trying out suggestions. Please let us know how you get on, what you find helpful and what you don't.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • marrianne
    marrianne Member Posts: 1,161
    edited 30. Nov -1, 00:00
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    Helen I. Am so sorry about what you are going through,I have cut my pain meds down dramatically and don't feel any the worse for it BUT I would struggle with nothing ,especially first thing and last thing at night ,would pain patches be any good ? Arnica jell drizzled all over my body. No rubbing in can help as does some ARnica bath soak and some mineral salts ,trying not to get to hot or cold or wearing difficult clothes,and when all else fails a drop of brandy ,Helen are steroid injections an option ,oh I. Wish I. Could be more helpful all good wishes to you and your hubby Hugs MArrianne
  • hen08
    hen08 Member Posts: 8
    edited 30. Nov -1, 00:00
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    WOW

    What a difference having your info has made,

    went to see different doctor yesterday, who gave me pain patches, result

    BUT
    best of all went for a reiki session and touch wood and everything else but great result, I have managed to get dressed, had no pain for 24 hrs now and managed to sleep, YES proper sleep for 10 hrs, so today still feel great like I use to, more myself.
    When i came out my hubby had to look twice says it's first time in over a year that he has seen me smile and that I have had the sparkle in my eyes, so will defo be going again, was best money I have ever spent.

    So HUGE HUGS AND KISSES to all at arthritis care for all the info. :D
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I am pleased that something has helped: we are all different in what helps or doesn't. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    I'm very pleased for you. I hope it continues.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright