Fatigue and pacing yourself

[heathersmum]

Hello all fellow RA suffers. I am new to this site and only recently diagnosed. My question is how do you all pace yourselves and manage life and fatigue. ? Any advice would me much appreciated.

Xx

[Hidden]

My fatigue levels have varied over the years. Sometimes the right medication helps. Sometimes a new medication makes things worse.

I had to leave work in the end, which meant that the energy I did have was spent more on looking after myself than before. So not working helps a lot, but is costly.

Also I developed a habit of planning a rest period into my day. It's really hard to come to terms with at first, but we all find a way to cope in the end.

Sometimes I have to right off a day, and other times I am fine for a few days.

All I can say is be kind to yourself, and patient.

I was diagnosed about 20 years ago, and I am still managing ok, so be optimistic, but also explain to people why you sometimes have to let them down.

Hope this is of some use.

[heathersmum in reply to Hidden]

Thank you for your reply.I have given up work at the moment .I have been on Methotrexate now for two weeks.Hopefully once the tablets get into my system I will get a bit better.fingers crossed.

[Hidden]

I think one key to pacing is to accept that fatigue is a real issue that does need managing, and acceptance can be the hardest thing. However I've had fatigue so bad that acceptance or non-acceptance weren't an issue - I just plain couldn't do anything.

The next stage, when fatigue lessened but was still a factor was harder in a sense. Then I started to have to make decisions and choices - what to do, when to do it, when to stop or at least take a break and so on. Over time the fatigue has managed me really - I've learned what works and what doesn't and if I have to push myself for some reason I just accept the consequences for a while.

The other thing that came along then was the recommendation I'd heard that exercise, as well as protecting joints, actually helps fatigue over time, which can seem counter-intuitive. But I've found that it is true. Fresh air and a stroll, tai chi or swimming or whatever floats your boat, if done regularly, are in my experience every bit as essential as the drugs. And it ain't easy keeping to that regime ... though the rewards can be absolutely great, or at least that's what I've found.

And another little thing - water! Mtx takers need lots of it and I've heard that it counteracts any Mtx-related fatigue. My husband's observed how drinking water picks me up and it's so noticeable that he's started drinking much more of the stuff, even though he doesn't have RD or take Mtx, the lucky so & so!

[heathersmum in reply to Hidden]

Thanks for your reply. I find I have drunk more water since taking the Methotrexate.my skin has got a lot dryer also .

[allanah]

Well advice from the worlds worst pacer is to realise if you don't have a plan you will overdo it and feel awful!

I still like the " spoon theory" as it just makes me realise I only can do so much each day , not double amount one day and nothing the next as I'm too tired!

Do you have your folic acid a few days after your mtx as they can adjust the dose and it can help the tiredness.

Also Nras do a good section on fatigue and a brilliant booklet on emotions relationships and sexuality which covers managing fatigue and symptoms on lots of life aspects. You can order on nras.org.

Good luck xx A

[heathersmum in reply to allanah]

Thank you Allanah,

I will listen to what you have said. I did quite a bit yesterday, but I had little breaks in between each choir. It seemed to work..

Thanks,I do have my Folic acid two days after my Methotrexate.

Xx

[nomoreheels]

Hiya heathersmum. Sometimes the disease itself can cause fatigue, especially in the early days before your meds start working to their full capacity. Another thing, if pacing yourself isn't managing your fatigue, it could be a result of anaemia or folate deficiency, both of which MTX can have a part to play in. Your regular drug monitoring bloods should bring any anaemia problems to the attention of your team but if they are ok It is possible, if your Rheumy agrees, to increase the folic acid you have weekly to replace the folate lost through MTX. I take 5mg every day except the day I inject & generally have more energy I feel, excepting when I know I've done too much that is but that's usually because I don't have fatigue! It's a vicious circle but you'll learn to listen to your body, sometimes! This from Patient.co.uk explains some more patient.co.uk/health/folic-...

[Azabat]

I've been using a timer (sporadically) it helps until I decide something has to be finished and ignore the bell

[ebut]

I have suffered with fatigue for 25years when RA was diagnosed. I find pacing quite hard because as soon as I feel better I tire myself out again!! Incident my I have been on mxt for over 20years so was interested to learn that several people attributed there fatigue to this.