Hello all

cazmarelda Member Posts: 6
edited 10. Dec 2017, 15:38 in Say Hello Archive

Hello all,

I was looking for yet more of anything for pain relief and came across the forum.

I started with knee pain and neck in 1997. After x-rays and scans I was told it was osteo-arthritis.

Apparently though my knees had been caused by the tracking in my legs being wrong from birth and no-one had picked up on that, so finally at 39 years old they found out and told me but it was too late.

My neck pain was called cervical spondylosis but I believe that is just another term for arthritis in the cervical spine.

Over the years it just all seemed to happen. I guess walking out of kilter for so many years had caused damage to joints that my have been find, had it been picked up when I was a child, Then walking in different ways to lessen the pain is doing the rest.

So neck, fingers but especially the thumbs, lumber spine they also said DDD for that but think it might mean the same, knees, ankles and toes.

The pain today is off the scale again and this is a bad one hence looking for any pain relief, yet again.

I think I have had all there is but I always look when it is flaring and I just write anything down that 'may' work and take it next time I see my GP.

So thats me.

I look forward to meeting and exchanging any idea on killing the pain - if only.


  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi Cazmarelda and welcome to the Arthritis Care forums.

    So sorry to hear that you are in such pain and find relief very difficult to find.

    You don't say if you are on any pain relief medication or if you have recently been to your GP to discuss this: perhaps an urgent appointment might be a good idea.

    There are a number of pain management techniques that you may try - you probably use some of them already, but do take a look at our booklet available for download on the web site: https://www.arthritiscare.org.uk/do-i-have-arthritis/publications/217-managing-pain

    Many of our forum members experience pain on a nearly continuous basis and I'm sure that you will receive some good suggestions from them.

    I look forward to reading your forum posts.

    All best wishes
  • cazmarelda
    cazmarelda Member Posts: 6
    edited 30. Nov -1, 00:00

    Thank you for the welcome.

    Yes, I am on medication morphine patches, 25mg, Pregablin ust 100 mg at bedtime I do not want to put more weight on, Tramadol 100mg 4x a day and Paracetamol and anti-inflammatory cream.

    I also have procedures at the pain clinic - nerve blocks, abalataion(sp), use to have steroids and lidocaine? trigger point injection, 16 in my back, every so many months, all for nothing.

    I get conflicting advice one pain nurse at my local GPs told me I had to 'Push through the pain and exercise. The head consultant at the pain clinic replied, when I told her this with, 'No, its gone way past the point of pushing through to exercise. You could make things worse'.

    I did do water aerobic though and just did what I could, so no lifting my arms above my head and so on but I have had to have so many hospital appointments and procedures I have not gone back yet.

    My toes are in a bad way and I had the operation to straighten just one to begin with and could not drive for 6 weeks had to have a special shoe on. It just piled more intense pain on for a couple of weeks and its ended up the way it was before the operation.

    I am refused new knees, even one, for at 61 I am 'too young' I have been told that since I was in my mid 40s. My dad had the operation when he was 74 and said it felt amazing he was back riding his push bike and going out for days. It was just his knees.

    I am never sure can you get a 'flare up' with osteo for someone told me it was only with RA. I am having a really bad time and have been for the last week or so. I would get an urgent appointment with the GP but they are just going round and round and I get referrals back here and there and with the pain and another condition I have that causes pain also. I cannot keep going round and round and getting nowhere.

    If I ask for referrals they are fine with giving me them but when I get to the consultants. the problems begin. I was diagnosed initially by a woman consultant who is now, over 20 years later, the lead consultant and so I asked to be referred back to the rheumatology dept, but he was very dismissive and said 'nothing could be done' and I had to learn to live with it. I wonder what he thinks I have been doing for the past 20 years.

    So, I spend my days reading or taking sleeping tablets, to escape the pain. A GP said I should do that when my son had rang for a GP visit because of the pain I was in. My sleep is all over the place for the pain wakes me up. It takes me so long to get out of bed when I sleep right through. One of the GPs is very dismissive of me if I rum out of sleeping tablet and need 7 or so even.

    I know what he means I am not stupid I am trying to cope and however, maladaptive that way of coping is, it is part of my coping. 'If the pain get so bad. I may get a few hours sleep'

    Sometimes it works and sometimes the pain will not let me. I do not overuse every month but probably 3/4 months a year. I do not always ring for more sleepers and then I add benzo withdrawal to everything else.

    It is all a mess and I use to be able to be hopeful but not so much now and I use to be determined to get things sorted or at least better, but too many blocks with the consultants saying 'I am too young' for this and yet I am 'getting old' and these things happen to 'almost everyone'.

    I was 37/38 when it started and 23 years later, 20 years since diagnosis I am now of an age where they can put it down to my age.

    I can no longer write for I cannot hold a pen properly I drink from a 'sippy cup' because my fingers/thumb drop mugs of drink. I could go on but I think you will have heard it before and of course the DWP want to know why I cannot work and I have to get someone to fill the form in saying why.

    ESA, right now but someone is helping and the forms gone in and now waiting and wondering how the hell they expect, with all the piles of x-rays and tests and procedure and so on, I could work. I would love to work I had a good career and I grieved for years for having to retire early. I then did voluntary work but in the end I could not say if I would be well enough to come in at any given time, due to the pain.

    I have gone on and my wrists and fingers are hurting. Sorry for so much of my moaning but it does get to a point where you want to spill it all out and hope some of the pain will lessen.

    Thank you
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. There is no doubt that ongoing pain is debilitating, depressing, frightening and isolating, and is something that everyone on here has in common. In my experience the stronger the pain relief the more I was taken away from the pain rather than vice versa which, for me, was far from ideal. One of the major setbacks we all face is the more pain relief we take the more we need to achieve the same kind of results: we soon run out of options. :( My main form of pain relief is distraction aided by between two and six 30/500 cocdamol per day.

    I began with an auto-immune arthritis back in 1997, began the meds for that in 2002 then OA was diagnosed in 2011. I have around forty affected joints, some with one, some with the other and the rest with both. The pain is always there but over the years I have learned not to pay it much attention and things became far easier to manage once I accepted that pain-free was a thing of the past. My sleep is frequently disturbed, every move hurts and some things which I cannot control definitely aggravate matters but this is what I have and what I have to deal with.

    I find that the cold and damp aggravate my OA, does it yours? The heat and humidity of the summer aggravates my psoriatic arthritis (PsA, my auto-immune one); that definitely flares and for weeks at a time. I don't think my OA flares, it just worsens for a short time due to weather or my overdoing things then reduces to its more usual levels. Active PsA makes me feel ill, tired to the point of nausea whereas the OA just gets grumpy and sulks.

    I have to go, my dinner has arrived. I might be back later but if not, definitely tomorrow. DD
  • stickywicket
    stickywicket Member Posts: 27,097
    edited 30. Nov -1, 00:00
    Hello from me too. You seem to be in a real pickle. Pain invades our lives and, like a weed, will take over all in its path if we are not ultra-careful. If you've not already done so please read the managing pain booklet referred to by Brynmor. It's a very good read and full of useul ideas.

    Like DD, I have two forms of arthritis and, also like her, I'm not big on pain relief. Yes, sometimes it has to be done but I find a combination of distraction and exeecise more useful for general purposes. I know I have some joints which, either because they have fused themselves or because the cartilage has completely gone, will get little benefit from exercise but I will always believe that keeping my other muscles as strong as possible is in my best interests. So I do. But carefully. And if, as now, I'm unsure whether I'm making things better or worse, I check with a physio.

    Sometimes life seems to consist purely of body maintenance but at least I feel I have some control and I do believe it has kept me moving (albeiy with huge limitations) for the 56 years since I was diagnosed with RA.

    Please join us on the other forums. Talking to others in the same boat is quite therapeutic and we can pick up some good tips.

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