BEYOND EXHAUSTION

hi, im a 44 year old mum of 2 kids, ive had R/A for 8 years, which is now severe. im on all sorts of medication, including co-dydramol, tramol, morphine patches, methotrexate injections, and retuximab (mabthera) infusions. my tiredness is spireling out of control ! its now so bad that it takes all my energy just to throw my legs out in the morning, my limbs feel super heavy and i now find myself making excuses not to go out, because im just so exhausted all the time. im now being weaned off retuximab, as it hasnt worked and going on a new infusion in december. if the kids come down with a cold i dread it as i know that within 4-5 days, ill come down with a chest infection. i can cope with all that, but this exhaustion is really getting me down, any ideas please ???? many thanks, dee x

6 Replies

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  • Hi Dee,

    have you got a partner? Or someone else who is willing to do some serious & planned helping-out? Maybe someone here will be able to suggest something that allows you to carry on at the same pace. But from everything I've read on HU the one main thing that might help is rest.

    Could you set up something ongoing that will allow you to get regular breaks from your busy routine?

    Looking after 2 kids with severe RA is quite a feat, I take my hat off to you. I know I'm making assumptions about how much rest you (don't) get, but I think most Mums try to do it all, with or without RA. With severe RA a bit of a rethink might be called for.

    Christina xx

  • I have no suggestions for you really Dee but I just wanted to offer you my sympathy. My kids are 20, 17 and 15 and I've only had RA for around 2 years (diagnosed a year ago this month) and I'm doing really well at the moment. But I can't imagine how hard it must be to have younger children to look after with a more aggressive form of RA as you obviously have. I do get very tired myself but that's because I'm a poor sleeper I think- always have been. I don't think it's the same kind of fatigue that people speak of having with their RA - haven't felt very flu-like and heavy since last winter although when I get viruses or infections I seem to get them very badly these days because of compromised immunity.

    Do you make sure you eat well and drink a lot of water and generally look after yourself and do you have a partner who can take over sometimes and give you a break I wonder? Also do you also make sure you get some exercise and fresh air/ daylight everyday and are get enough Vitamin D and other vitamins too? These are the only things I can think of that might help you if you're not getting enough. Please take care and I really hope the next anti tnf you try is the one that turns your RA around and makes you feel much better. Tilda x

  • Hi Dee,

    welcome to this site, sorry to hear that you are finding things increasingly difficult and that you are exhausted. You do not say how old your children are and how much they need looking after, also physical looking after is not necessarily harder than emotional support as they get older. you give a list of the medicatio you are on and i notice that you do not seem to be on any antidepressants, depression is very common with arthritic problems and can contribute to feelings of exhaustion, you may want to discuss the way you are feeling with your Dr. I know the feeling of exhaustion and depression b4 I had my current joint problems and I did not recognise them at the time.

    Hope you feel better soon and less tired

    cris

  • My heart goes out to you xxxx

    Im a 43 year old newly diagnosed, earlier this year, and thankfully my son is 13 and really can cope ie getting dressed etc himself, feeding himself and helping me around the house.

    I sympathise with the fatigue as im finding it hard to sleep with hot flushes and always seem exhausted even once ive got out of bed!

    This disease is horrid!

    Hope you feeling better soon

    Xxxxx

  • As others have said, I do think you need to put some thought into how you can get more support as this can't be helping your RA. My RA is nowhere near as severe as yours, and I couldn't manage to keep going at my previous pace so I'm impressed that you have coped for 8 years! But perhaps this is the moment to wave a white flag and reassess? I ended up making some big changes that I had thought would be financially impossible, like stopping full time work. But in the end the benefits have been worth it. So don't rule anything out, and consider anything & everything? But loads of sympathy, I really don't know how you manage.

    The other thought I have is whether you have asked to be referred to a pain clinic, or talk to someone specifically about how to manage your pain, as the drugs may not be helping your tiredness and you might do better with a slightly different mix? Polly

  • thankyou all so much for taking the time to help me. just a quick update---- this morning i went to docs got my blood results, and to top everything else, im on the change !! (wondered why i kept waking up wet through in the night, and didnt want my husband any where near me, which didnt help as my marriage is in big trouble anyway !!) he wont put me on HRT until i have my new infusion ( toczilimab) in december !! felt the lowest ive ever been, so rang my rhumy nurse who told me to get to the hospital and gave me a steroid injection, to help dampen these continuous flare ups down... do you know something, it really helps to know that you people take time to try and help someone youve never met, thankyou all xxxxxx

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