Newbie

Hello - I would like to say what a wonderful site this is, which I found by accident and I am really glad that I did. I have recently been diagnosed with RA and am finding it difficult at times to come to terms with.

I was originally on a high dose of steroids and have now been prescribed methotrexate of which I have now been on for about 4 months.

Is it normal to be so tired after doing activities such as gardening and even ironing? After doing anything slightly strenuous I really suffer for it the next day and can hardly get out of bed. It is so difficult to motivate myself to get moving.

Any tips and advice would be most welcome.

Grannyshiraz

22 Replies

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  • Grannyshiraz, sad to say yes it is. You must learn the pacing way. You do a bit,you sit a bit and you do a bit more. What i'm trying to say is don't do it all in one go as you will pay for it later. You work for 10-15mins and then you sit for the same time and so on. This is a sad fact of life.

    Welcome to our group, they are a great bunch of people,they are there for when you want to moan and share good news and they are all very supportive as well.

    I look forward to hearing more of your blogs. Sylvi. xx

  • Hi there, welcome to the site. I think we all stumble across it when looking for help. There are wonderful people on here with really helpful info.

    Yes RA does make you tired doing things like gardening and ironing........ Things that 'normal' people take for granted we have to pace ourselves to achieve!

    I try to do approx an hour at a time then stop for half an hour then go again,even this is at a slower pace than before RA. If I don't work this way I would hit the wall trying to be as I was pre RA.

    It is a difficult disease to come to terms with but I think accepting you have to go a bit slower and pacing yourself really helps.

    Judith x

  • Hi there and welcome to this site. there are a great many people here who are happy and willing to help. For advice or just to moan at.

    I am finding that I am constantly tired and achey, I have not yet got a difinitive diagnosis but my symptoms and high RF are suggestive of RA. I am seeing a Rheumy on Monday and am hoping to get a diagnosis and start some treatment.

    The folks on here all talk about pacing yourself and I notice that is the advice you have been given hope this helps

    cris

  • Hi welcome I was the same but as the ladies on here say pace yourself . I do all I can in the morning and rest in the afternoon hope you get so pain free time

    Karen x

  • Welcome. As the others have said fatigue is a way of life with RA, that said you can do stuff to help yourself. Try to think a little bit smarter about how you do stuff, look at regular tasks and think about ways you could achieve the same result but with less wear and tear on yourself. Listen to your body, if its telling you to rest..do so, no point martyring yourself for housework or chores.

    mserdee.blogspot.co.uk/2008...

    There are several posting of the above link all over the net but its a useful way to look at things. Good luck and God bless, Linda x

  • Hi and welcome. You have still only been taking MTX for quite a short time at 4 months. I found it took about six months before it really made a difference to me and once I had Hydroxychloraquine added in too and switched to injectable MTX a month ago I have found myself to be more or less pain free. MTX side effects can be a problem and can cause extra tiredness unfortunately so the pacing is needed to cope with the drugs as well as the disease. That said many on this site manage to hold down full time jobs and live full and busy lives so I think it helps to expect to feel well again as otherwise we can just become victims of our own worst preconceptions? Tilda

  • Hi

    Welcome to the site.

    As everyone has said you have to pace yourself, something I am still finding difficult at times but am learning!

    All the best.

    Mary x

  • As others have said, fatigue is a big problem with RA. For me it's at its worst in the mornings, so I am adapting my life so I can go with that flow. I take my daughter for the train at 7.30, then retreat to bed or the bath, and read, listen to the radio or just snooze. I get moving around 9.30, then around 11 the fatigue lifts. I've tried adjusting the time by getting up earlier but it's always around 11. Weird.

    Like everyone else, I do a bit, then rest. I have learned the value of a proper lunchbreak, having been 22 working years without really having one - now I always stop and eat properly and sit for a while, even if I'm just here on my own.

    Having always been a night owl as well as a lark (I only used to need 6 hours sleep ever) I now head for bed around 9pm, lights out by 10.

    This has all taken some getting used to, but it's better than the state of total exhaustion I was in when I didn't take notice of what my body was saying. Following on from the exhaustion also came a lot more pain and stiffness. This definitely works better for my body.

  • Hello I would just lie to say welcome too,I am newly diagnosed early September and I'm on week 7 of mtx at 15 mg.personally I have had a busy few days and yes defintly I am paying or it now.im tired and ache all over as I didn't pace myself,and now wish I had listened to everyone's advice on here.i will in future do a bit then sit down then do another bit.ive got a week of work so thankfully I can chill !! Take care Michelle xx

  • The thing I've learnt is that I used to push myself to the limit, and then flop and have a bad spell, and that really undermined me as I seemed to get weaker and weaker. So In the last year or so I've been much better about building up stamina again, and so now I really try to avoid doing absolutely nothing and resting for too long. So have reorganised how I spend my time, and make sure I do some exercise every day, as well as slowly doing things. Less exciting as don't have those buzzy fun high action days very often, but then also don't have as many lows. Oh, and I've stopping doing things I hate, so bye bye ironing.... Polly

  • Hi and welcome, I was only diagnosed at the beginning of the year so I'm fairly new and still trying to get used to it all, but the one thing I have learned is that you cant do the things you used to do, you really do have to listed to your body and rest when it tells you to STOP, and sit. My husband still works and needs a clean shirt everyday but after I have ironed 4 shirts I have to rest, it sounds rediculous but otherwise I push my self too far and then suffer afterwards. I think we all know the feeling of not wanting to get out of bed, but does it matter, you must listen to your body.Take care hope you feel better soon. Wendy x

  • Dear Nellysgran's husband.... Please iron your own shirts! Pollyx

  • Ohhhhhh if only !!!!!!!!!!!!!

    I had a good laugh though, ;-) cheered me up, thanks Polly x

  • Hello and welcome. Glad that you have found us. Like the others say, it is all about pacing yourself. Hopefully once you are stabilised on MTX and possibly other treatments you will be able to get back to a reasonably active life. Have been on MTX since 2008 and have been very stable since May of this year. I am a nurse and worked full time doing 12 hour shifts, now I work half-time although unfortunately still have to do the 12 hour shifts. Since I have reduced to half-time I feel like I am almost my old self, although my running days are well and truly over (I did my second and last marathon in April 2007!). Instead I now enjoy taking our dog for long walks most days. Rome wasn't built in a day but try to stay positive, I am sure you will get there.

    Wendy xx

  • Welcome to this site- it is really good sounding board to hear of other peoples experiences so that you don't beat yourself up thinking you are being a wimp!! I had been on Mtx for about 5 years and was so well controlled on it my RA Doctor said I was one of his best results - I was back to the old me.But....about 6 weeks ago I had to come off it to have investigations for another condition and within a month I was almost back to square on - stupidly I just did as I was told as I was feeling quite bad, but now I wish I had asked more questions. This week I am back on steroids and am on the path to getting back to 20mg per week Mtx. If this situation ever arises again I will ask a lot of questions. I have had to cancel a holiday and am just hoping I can get back to where I was a couple of months ago.

  • welcome Grannyshiraz... if im quick getting the clothes out the washer , then straight in the dryer ,, then fold away soon as ,, i find i dont need the iron :) it doesnt work with shirts tho :(

  • Just take your glasses off and they'll look fine...won't even notice the wrinkles. Px

  • hey ,,cheeky .. dont you mean creases ??.. x

  • Oh whoops....slip of the finger. I blame it on the RA brain fog, can't tell them apart any more... Shirt/skin...not much difference? Px

  • Just a wee note to say hello too! Think all the lovely other members have said it all. Just want to agree with you- great site and such a lovely bunch. Few weeks ago I was moved to tears in a good way with the advice and support given when I hit a wee bad spell. Hopefully you will get the support you need too and feel less alone. K3let xx

  • Many thanks to everyone for your lovely replies and welcomed advice it is much appreciated. Sorry I can't reply to you all individually as it would probably take me all night :-)

    I shall certainly take stock of things and try to pace myself as this seems to be the key. I shan't be in too much of a hurry to get the ironing done ;-)

    Again, many thanks for making me so welcome and lovely kind messages.

    Sharron x

  • Hi Sharron just thought i would also say welcome, I was diagnosed by my doctor at the being of september,I have my first appointment on the 14th november to see the rheumy,

    (I can't wait) I'm also new to this site and what they say about pacing yourself is so true,

    I have alway been quite active, worked part time and very house proud, im not working at the moment and am still finding it hard to a just, but by listening to these lovely people they have helped me to stay possive and that rest is more important than housework, I'm hoping that when i start my meds I will be able to return to work again.

    Take care shirley x

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