Hello

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Daveh
Daveh Member Posts: 2
edited 28. Nov 2023, 14:04 in Living with arthritis
Hello everyone, I have really struggled to post on this forum. I don't really discuss my health with anyone including my family because even though they know I suffer with arthritis I don't want them to worry.
I was diagnosed 5/6 years ago after suffering great pain, discomfort and severe swelling in my feet. Despite a few hiccups my medication , methotrexate and erelzi, have things under a fair amount of control but recently I have started to experience pain in my hips and lower back. I still do my full time job and am desperate to be able to continue to do so therefore I am reluctant to tell my Consultant or the Nurses that I am struggling just in case they do tell me my health is getting worse.
I admit I am trying to avoid the conversation.
I have read other people's stories on here and I feel their frustration, anger and the many other emotions that arthritis provokes.
I feel going forward that I shall continue to read these rather than post to much as alot of the time I don't really know how to express my feelings.
Thank you for reading this and once again.....
HELLO TO YOU ALL

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi Daveh

    Welcome to the forum, don’t feel you have to post, just read and know we are here for times like this, and now you’ve joined, for opportunities for you to help other members on their journey with arthritis.

    It’s a bit sad that you don’t feel able to share how arthritis affects you with your family, I can see you are a private person and it’s true it is hard to understand if you don’t have it yourself. It can be done though, my oh and I struggled at times but now we have a couple of plans in place to help me not get snippy with everyone or struggle to be the me I was before arthritis which is lying in a way.
    It’s also nice to have someone with you when you go to see your consultant etc.

    So your arthritis has been controlled for a few years and now you have back and hip pain. It would be worth going to see your gp, their are exercises that can help or maybe it’s osteoarthritis and you need to know how that will progress, or it may be you need to see your consultant.

    Take care
    Yvonne x
  • stickywicket
    stickywicket Member Posts: 27,719
    edited 30. Nov -1, 00:00
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    Hello Daveh. I can see you are a strong person who is trying to shoulder your own burdens and not let them impinge on your family. That is very laudable in itself but......but......

    The danger is that, as the arthritis and consequent pain become a bigger part of your life the ones closest to you are kept at bay more and more. It can become a wedge between us.

    We all know that arthritis affects every member of a family albeit in different ways. It can't be helped. I've found, over many years, that the trick – for me, at least – is to be upfront though never 'moany' about pain and things I can't do, Or things I now need help with. Sometimes it can be quite simple – a new tool, a lightweight kettle for example, re-arranging of furniture and / or schedules. Sometimes it's bigger – a walk-in shower, a bungalow, help in the garden. I don't get things right all the time even now but I do know that trying to just soldier on is rarely a good solution – for me, my husband or my family.

    I thoroughly endorse Mod Yvonne's suggestion of asking for physio. I don't know where I'd be without it. But also please try to steel yourself to ring your rheumatology helpline. If it is, indeed, getting worse, your meds might need a tweak. Sometimes that's all it takes. I've just had my methotrexate upped. Unfortunately, it won't go away if ignored: it'll just be encouraged.

    Also, please see this as a safe space where you can 'talk' to understanding friends. We might not always agree (Who does :lol: ) but we all have a great deal of unwanted dross in common.
    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, I've been troubled with auto-immune issues from birth so don't feel the need to talk about it because an 'unhealthy' life is the only life I know. I put unhealthy in quotes because nothing that ails me was, or is, infectious: knowing that getting better was never an option dunnarf make things easier to deal with. If you are coming at this from a healthy background then it must be far harder to accept, deal with, learn how to manage etc. whereas when it's merely more of the same it's no big deal. I began the first arthritis in '97 aged 37 and the second was diagnosed when I was 52. I have the second due to the delay in starting the meds for the first. So what? I can't change history. Things are better on the diagnosis front now and that is a benefit for and to others which they do not appreciate.

    You will find plenty of people talking about themselves on here and it might not make for happy reading as the majority are indignant, in denial, in despair. All are tired, in pain, frustrated. Any form of arthritis is progressive, degenerative and causes pain, end of. Some are fortunate in they have only osteo, in one joint, which when replaced if suitable means their troubles are over: millions more don't have that luxury.

    Over the years my husband and I have developed a code phrase which, when uttered by me, means he has to up his game on the practical support front. We rarely sit and have long, in-depth conversations about my arthritis, why would we? He does not feel it, cannot comprehend it, has no idea how tired it can make me feel. Likewise I cannot comprehend how he can move without pain and can barely believe I used to :lol: Gawd how I wasted the time when I could. :lol:
    When we do talk about it - and we do because it affects both of us - despite the topic being negative in many ways we respond in a positive manner for both our sakes.

    I am more than my disease, I always have been and always will be. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 29,490
    edited 30. Nov -1, 00:00
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    Hello Dave

    Thank you for taking the time to post to introduce yourself :)

    Nice to know you'll be in the back ground keeping an eye on us :lol:

    As for your back/hips you know I would speak to your GP it doesn't necessarily mean your meds aren't working it could be unrelated. I hope you will go. No Dr would want you to give up working if you want to continue as it's so good for our mental health.

    Take care

    Toni x