Hi

GemWood
GemWood Member Posts: 2
edited 5. Jan 2019, 07:47 in Say Hello Archive
Hi everyone,

I’m 38 and was diagnosed with rheumatoid arthritis a year ago after having my fourth child. I’m on steroids but haven’t been given anything else yet as my appointments keep getting cancelled. I’m in so much pain every few weeks and feel I’m not the person I used to be anymore. I was always so happy and busy. Now I can’t bear doing anything as it all seems such an effort. I cry all the time! Does anyone else feel like this? I just want to be back to myself and feel normal again! The pain is in my shoulders, neck, wrists, fingers and ankles. I also don’t feel my husband really understands. I know it’s tough for him too, but a cuddle is all that would help. Instead he just seems to ignore the situation. Any ideas on pain relief and helping get through each day with no sleep or rest from looking after 4 Kids would be greatly appreciated!! Thank you xx

Comments

  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hello GemWood,

    Lovely to meet you, it is so hard when you get a diagnosis and out of nowhere! Of course you are struggling, frustrated, grieving, depressed. Now you have found the forum you will get help, from others with arthritis to find a way forward, come on here and share your frustrations etc, get them off your chest so to speak, we will know what you mean.

    Next, here’s some facts about Rheumatoid Arthritis (RA) so you can see where you are and what your rheumatologist will discuss with you.

    https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

    Here is some general info on living with arthritis

    https://www.versusarthritis.org/about-arthritis/living-with-arthritis/

    It must be so hard with 4 children too, try to work out what it’s essential to do and what can be left, get the older children to help where they can, work out ways to make tasks easier, we have a hints and tips thread

    https://arthritiscareforum.org.uk/viewtopic.php?f=8&t=47597

    which could be useful, ask questions - any you can think of

    Take care
    Yvonne x
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hi GemWood and welcome :)

    It seems fairly common for arthritis to start after a pregnancy though mine kicked off long before I got pregnant.

    It's very bad if your appointments have been cancelled for a year. Can you ring them and complain? Or, at least, get your GP to do it for you? It helps to be on the Disease Modifying Anti-Rheumatic Drugs (DMARDS) asap. And, if steroids aren't helping, that's even more unfortunate. Why on earth weren't you given DMARDS when you were diagnosed?

    I always worry a little when people say they 'want to feel normal'. If your aim is to be as you were before the arthritis rocked up you'll be disappointed. Accept that you have it and that your life will be different. Not bad. Just different. I've had RA since I was 15 and I've had a really good life. It's not pain free and I can't always join in with things (though often I can with a bit of forethought) and I get tired more easily than others. But it's good. It would definitely have been different without the RA but I'm not at all sure it'd have been better.

    No, your husband won't understand. Nor your children. Or friends. We always say that arthritis affects the whole family. But it affects them differently. They know nothing about it and may have come to all sorts of wrong conclusions about why you've changed. Try reading this https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ . It might help to show it to your husband. It's very important that you both talk about how you feel abut it. Find a quiet time and have a good heart to heart. Add in a bottle of wine if desired :wink:

    As for ideas about getting through the day.........for a start you need sleep. Ask your GP for some pain relief. Also you need rest. Cleaning can almost always wait. Cooking can be done on better days and then frozen. A take away or a ready meal once a week will harm no-one. And why not draw up a rota for the children to help. I never did until I returned from hospital when mine were about 8 and 11 to find my husband had one up on the kitchen wall and they were keeping to it :o It was very useful to them when they went to university and they are both very good cooks now. (Less interested in cleaning, admittedly, but aren't we all :lol: )

    I do think you should start by chasing up that appointment, though. And ensure your GP is aware of your need for pain relief.

    Please keep talking to us. We do understand – all too well.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, I am sorry you have had to find us. I am much further down the arthritis road than you and simplified my life by not having children - the dross has ended with me.

    I feel for your husband, understanding another's illness is very hard especially if one's own health is good. Arthritis is an invisible disease, we can look well but feel awful, look awful and feel OK; people may associate arthritis with pain but never tiredness, living with an uncontrolled auto-immune fatigue is very hard. Men (generally speaking) like to fix things and we cannot be fixed - even the meds don't do that. He may also be feeling very worried and uncertain about the future, nobody knows what's in store but when well we never think about it, we make plans and think ahead with confidence. You don't mention how old your children are but hopefully the eldest one may be able to become more responsible around the house.

    I am sorry that your appointments keep being cancelled, that is far from encouraging let alone helpful. GPs can do nothing for auto-immune arthritis, the meds have to come from a rheumatologist. I am living a good life despite the disease, I was fortunate in that I was self-employed (the disease began 18 months or so after I started up) and retirement is wonderful. I take a daily small dose of an anti-depressant, I was doing OK psychologically until 2011 when osteoarthritis was diagnosed in addition to my psoriatic arthritis; my plan was to take them for three months until I had sorted myself out and come off them but my rheumatologist was much wiser: being boosted mentally helps me cope better with the widespread pain and the increasing restrictions which the disease is imposing upon me.

    I have organised my life to cope with disease and will keep doing so. We moved house (no stairs!), gone cordless for vacuums, replaced a gas hob for induction for easier cleaning, little things like that. I am finding it harder as I get older but that is to be expected. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben