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hi

louwillouwil Posts: 4
edited 17. Apr 2017, 12:28 in Say Hello Archive
Hi I joined the forum after reading a post on srthritis. I am struggling with peoples perception including my own partner that because they cannot see the source of my pain it cannot be real. I am prescribed liquid morphine co codamol amitriptyline for my pain. I try and take the morphine for breakthrough pain only but that causes it's own set of problems. I accept that I will always be in pain but I want to control the pain not the pain control me. I need to find some positives in this because my future is looking very bleak and that saddens me.

Comments

  • moderatormoderator Posts: 4,093 mod
    edited 30. Nov -1, 00:00
    Hello louwil,

    I wonder how long you have had arthritis? If it's not long it's understandable that your partner is having problems getting his head round it all. I remember when I was first diagnosed - I knew about doctors - you went to them, described the symptoms, they gave you something, it went away! Even if it was appendicitis, hospital, operation, go home, get better!

    Now it's not like that, it's a real change from doing as you're told, you may have to wait a long time to get an accurate diagnosis. Hopefully you are an equal partner trying out various medications to control your symptoms enough to let you manage. It takes weeks to see how meds are working in your body, so months to get the best control.

    A loving partner will find that so hard to understand, can they accompany you to your next appointment so they can see how it is for you and ask questions for themselves.

    Take your meds as regularly as you can to keep on top of the pain, try to arrange a chair that's as comfy as possible, work out how to get around as easily as possible at home etc. I benefit from warmth so have a wheat bag, cosy blanket close to hand. Here's a booklet about help with pain

    https://arthritiscare.org.uk/assets/000/001/515/ManagingPain_web_original.pdf?1472207221

    Do chat to us here, say anything, we know what it's like, we do empathise, remember you're not alone, if you have a problem someone else, many someone's have been there before you and found a solution :D

    Take care
    Yvonne
  • louwillouwil Posts: 4
    edited 30. Nov -1, 00:00
    moderator wrote:
    Hello louwil,

    I wonder how long you have had arthritis? If it's not long it's understandable that your partner is having problems getting his head round it all. I remember when I was first diagnosed - I knew about doctors - you went to them, described the symptoms, they gave you something, it went away! Even if it was appendicitis, hospital, operation, go home, get better!

    Now it's not like that, it's a real change from doing as you're told, you may have to wait a long time to get an accurate diagnosis. Hopefully you are an equal partner trying out various medications to control your symptoms enough to let you manage. It takes weeks to see how meds are working in your body, so months to get the best control.

    A loving partner will find that so hard to understand, can they accompany you to your next appointment so they can see how it is for you and ask questions for themselves.

    Take your meds as regularly as you can to keep on top of the pain, try to arrange a chair that's as comfy as possible, work out how to get around as easily as possible at home etc. I benefit from warmth so have a wheat bag, cosy blanket close to hand. Here's a booklet about help with pain

    https://arthritiscare.org.uk/assets/000/001/515/ManagingPain_web_original.pdf?1472207221

    Do chat to us here, say anything, we know what it's like, we do empathise, remember you're not alone, if you have a problem someone else, many someone's have been there before you and found a solution :D

    Take care
    Yvonne
    Thank you for replying. I've had my problem for 5 years. Unfortunately I am unable to work not only because of chronic pain but because I can't keep upright or I fall over. I try to keep our home nice but it's not good enough. I'm frightened because I love my family but I cannot live with this pain or be a burden.Theres just no respite from it. I try to see positives I really do.

    Sent from my SM-G935F using Tapatalk
  • stickywicketstickywicket Posts: 25,864
    edited 30. Nov -1, 00:00
    Hello louwil and welcome from me too :) I'm glad you decided to join our online community because all of us here know that there are times when we just need to talk to someone who understands the pain and difficulties of arthritis without us having to spell it out.

    You write of pain relief but not DMARDS so I'm guessing that yours is osteoarthritis. I have both osteo and rheumatoid which affect virtually all my joints though my back is pretty good. Which of your joints are affected?

    Sometimes, when things are bad, it can be very hard to see the positives but I promise you they are still there and will still be there when you are, once again, able to see them more clearly. I consider I've had a very good life despite my arthritis but, of course, there have been some horrible times.

    We tell people on here that arthritis affects every member of a family and it is true. Certainly, the person who has it has the hardest time but there are repercussions for everyone. When my sons were young they didn't get such good toys or as many holidays as their friends because, with only my husband's wage coming in, we couldn't afford them. They, and my husband, had to pick up the slack on things I couldn't do. (I had to learn not to nag about things left undone :wink: ) My husband still has to wash my hair, drive me to hospital and doctors' appointments and much more. Sometimes it gets him down too. Sometimes we still, after all these years, have to sit down together and talk about how the arthritis is impacting on each of us and how the other one can help.

    You have a good plan in wanting to control the pain rather than vice versa. Pain relief isn't the only way though. Healthy eating, exercise and simply learning how best to manage our lives are very effective tools. https://www.arthritiscare.org.uk/living-with-arthritis Very many people on here recently said distraction was one of the best ways to deal with pain ie just finding something that absorbs our attention so that it's harder to think of the pain. Different things will work for different people but the aim is the same. Also there are lots of devices to help us live independently. I have a bath lift, a raised toilet seat, a grabber stick, a sock aid and a dressing stick plus more 'normal' kitchen aids. Have a look here https://www.arthritiscare.org.uk/treatments-aids-and-equipment/independent-living/independent-living .

    I'm wondering why you 'can't keep upright'. Is that the arthritis or a different problem? Many of us on here need walking aids – sticks, crutches, rollators or just perching stools for when we're eg 'standing' in the kitchen. There are ways round so many things and, in becoming more active we automatically become healthier and our joints hurt less because they are being supported by stronger muscles.

    You sound thoroughly unhappy right now. Perhaps talking to a sympathetic ear would help. Our lovely Helpline people will, I think, be back tomorrow. Why not give them a call?
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,543 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. I am twenty years in, I began with an auto-immune inflammatory arthritis which, over the first fourteen years, damaged my knees, toes and ankles thus leading to osteo which was diagnosed in 2011. The meds for the former don't help the latter as that is different in cause and nature. I now have around forty affected joints so pain is a fact of life and has been since it all began - oddly life became easier as more and more joints joined in because there was no longer such a contrast between the hurty and non-hurty.

    I take a steady and regular dose of 30/500 cocodamol as they dull matters sufficiently to allow me to get on. I have adapted what I do and how I do it, my mantra being 'do a little, rest a little'. This helps me to control matters to my advantage. Stopping work was a very positive step, I battled on for sixteen or so years but I was lucky in that I was self-employed.

    My husband has witnessed my steady decline and knows when he has to increase his practical help because I have a phrase to let him know, viz. 'things are rough'. He has read 'The Spoon Theory' and There's a Gorilla in my House', both articles are on the net and give good explanations of the challenges of living with a chronic condition; they helped him to understand a little more about how things are for me but, overall, it remains a mystery as he is afflicted by that ghastly condition, good health. I don't know how the poor man manages - seriously, I don't.

    I agree with Sticky, perhaps a call to our Helpline tomorrow could be a good thing and also, perhaps, a chat with your GP. When the OA was diagnosed I plunged into depression and, to this day, take a small daily dose of an anti-depressant because, as my rheumatologist pointed out, if I am mentally stronger I can cope better. I like to think I do! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • louwillouwil Posts: 4
    edited 30. Nov -1, 00:00
    Thank you. The only positive I have found this far is this forum. I shall look for those articles and get my partner to read them. xx

    Sent from my SM-G935F using Tapatalk
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