Fatigue - when will it go away?

Hi I've been on methotrexate for 4 weeks at 10mgs increasing to 15mgs hopefully in the next 8 weeks. I'm currently off sick , not so much for the pain and stiffness but more for the extreme tiredness and brain fog. And of course now I have nausea too.

Does this get better on methotrexate and how long will it take? I feel so guilty being off sick and worry people will think I'm flaky and weak for being off sick because Im tired!

18 Replies

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  • Hi Barb66

    I have had fatigue on and off since starting MXT earlier this year. I started on 15mg for 4 weeks then it increased to 20mg I had some nausea to begin with which eased off by 3 months. I'm now on injections but found drinking lots of water at least 8 glasses a day helps. I also noticed when tired & fatigue increases nausea increases. I now work part time I couldn't manage full time.

    I was told by someone that it can take a couple of years to stabilise you as the medication is being sorted.

    I understand you feel bad being off sick I was sick for 5 months before and after diagnosis.

    I hope you start to feel better soon.

    Matilda

  • Thanks Matilda that's very reassuring to hear you were off for that long and that you now work part time. I'm struggling with the guilt and also other people's views of me. I sometimes feel now that Im just this illness! 😊

  • It is so difficult not too worry about what other people think about you! But YOU know that you are genuine. So think about how you can put this over to other people. You need a way a saying "I have a serious long-term illness which together with the medical team, I'm going to get under control, but I'm not there yet. All my energy needs to go towards getting this under control. Other people's needs and work are secondary. If I don't do this, I won't improve and then I won't be able to help others."

  • Thank you that's so helpful. I think first of all I need to get it across to myself! I feel I need to apologise for it and feel embarrassed when friends ask how I am and have asked them not to - I feel such a fraud

  • Fatigue .... it's horrible, horrible, horrible. But the Mtx won't have taken effect as yet, or perhaps it's more accurate to say that it may well be helping on some level but you're not likely to feel the benefit for another month or so.

    I was poleaxed by fatigue, normal life went for a burton. But gradually it eased, then it got a bit better, then a bit better still. I'd say it took the best part of a year to get to a point at which I felt I could function more or less normally. However my fatigue was probably fairly extreme, if yours is not quite so bad you might get there sooner.

    You're bound to feel guilty I suppose, even though we all know it makes no sense whatsoever. I did away with the word 'tired', I wasn't tired ..... 'tired' is what happens when I've done a day's work, not when I've just got up! I'm not even sure 'fatigue' cuts it really. But it's a better word to use if you're asked how you are. If anyone has any ideas how to describe the state more accurately, without melodrama or overtones of self-pity but just to sum up how debilitating it is I'd like to hear them!

  • Hi Barb

    I also had a terrible time with work before and after diagnosis - it was an ongoing problem for about 18 months where on some days I couldn't even work from home because of the brain fogs and fatigue. I also had the guilty feeling that people didn't trust what I was saying,and that just added to my stress,which in turn makes the condition worse. I found a PDF booklet on the arthritis website that you could print off and give to your employers so that they could understand to an extent exactly what you and your body are going through,and why you can't be precise in saying if you'll be able to do a full week or not in advance!! I printed off a couple of copies,gave one to my line manager,and also one to the head of HR so that they had no excuse of saying they couldn't understand - it also has helpful tips in there for the employer on how they may be able to help you while you get your condition under control. It's not a complete answer,but it definitely helped in my case,as the woman from HR was quite interested in reading it(more so than my line manager) so at least it felt like someone finally understood a little of my issues at last. I hope you find this useful.

    Hope you find comfort soon

    Nicki

  • Thank you Nicki and everyone else - I want to cry with relief at your replies. I didn't realise how isolated I felt and how much I am in denial/ or feeling Im not deserving of sympathy. I completely agree it's so difficult to know what to say and not appear a complete martyr! I wish Id joined this site weeks ago xxx

  • I tried to give this booklet to my manager fro the team to read. Basically was told to long winded and to find something that summarises the effects of RA and work

  • That's really not very helpful - what did you say?

  • It's a bit like the NRAS video

    Can't see fatigue or pain so I need to be verbal when I feel like this but it goes on death ears.

    Only complain when I'm not working to my grade.

    It was suggested I reduced my grade a few months ago.

    More or less forced to reduce my hours. Which has been better for me. But the last 6 weeks I've been nursing a cough which was a virus so no antibiotics and has increased fatigue. This delayed me getting my flu injection now booked for tomorrow.

    Since the change of weather end of last week I have been more asleep than awake. Pain and stiffness has increased keeping me awake at night and difficulty walking down the stairs in the morning.

    Struggled at work Monday and Tuesday now 2 days off.

    Did a DAS score this morning was over 4.

  • Hi Matilda

    That sounds exactly how my manager was - he just presumed that because I made the drive in each day(60 miles each way,but in absolute agony as I couldn't take my meds until I reached the office) and also because he couldn't physically see what was wrong,that he'd decided after six previous years that I was suddenly work shy! It really didn't help in the fact that he was new to our company and obv wanted to make a good impression on the people above by not tolerating time wasters,even after I had to get the disability law service to write a letter on my behalf because of how badly they'd treated me in direct comparison to other colleagues. That was how the director of HR came to be involved,and I was glad she was - for some it may seem extreme,but according to the law service,I definitely had a case,and it was only then that they actually started to listen to me - it was a step that was needed,as my line manager got reined in over his behaviours,and I actually felt comfortable talking to the HR woman,even on my worst days - I knew my manager wouldn't read the booklet,but by giving it to HR,I knew he'd learn about it another way instead.... a small victory,but an important one in regaining some of my dignity back. It annoyed the hell out of me that I had to do that in the first place,but if that's how they were treating me,then I wasn't going to be bullied ontop of everything else I was going through at the time!! It did take absolutely everything out of me,and I had to be put on anti depressants just so I wasn't constantly crying as soon as I walked into the office,but as they obv wanted a fight,I made damn sure they got one!!

    I really hope you don't need to go to the extremes that I did,and that you can carry on working for as long as possible. I had to take redundancy(along with the rest of my team) instead of being moved as my condition still wasn't under control and I couldn't even work from home - I just thought sod it,it's time to take a step back and look after me for once. Was one of the hardest decisions but also the easiest as it means it's a huge weight lifted and I could also stop the anti depressants because if I wanted to cry,now I could freely 😊

    Here's to good health,and keeping wrapped up warm.

    Nicki

  • Hi Barb66,

    I'm sorry to hear that you're finding managing fatigue difficult to deal with at the moment.

    Our helpline team is always available to offer information and support if you need it, you can contact them on 0800 298 7650 (Mon-Fri, 9.30am-4.30pm), or alternatively email helpline@nras.org.uk

    We have also just launched a new webcasts section of our website where you can view information presentations delivered by experts and healthcare professionals, similar to those delivered across the UK at NRAS Group meetings and events. One of these focuses on the topic of 'Managing flares and fatigue of Rheumatoid Arthritis' and is available to view here:

    webcasts.nras.org.uk/

    I hope this helps.

    Regards,

    Mark-NRAS

  • I can't really add to what's been said already. I just wish you lots of strength and that you'll manage to accept that you are the most important person right now. You will eventually be in control of your condition rather than the other way around. All the very best.

  • What would we do without this site, educational, empathetic, caring, supportive----bloody amazing! X

  • I was told by my Consultant that it would take between 3 to 12 weeks before MTX would start to have an impact.

    I started taking MTX in Nov 15 and I can't say there was a sudden drop in fatigue after 12 weeks, more like a gradual reduction. So as others have said, you need to give it time to work.

    Watch the webcast as recommended by NRAS.

    Unfortunately we need to learn to pace ourselves. Once you can do this it will become more of habit than a bind and that way you will be able to enjoy life again.

    Finally, the only thing I had difficulty explaining to people was the concept of fatigue. Yes we all relate to tiredness but fatigue is in a category of its own! Nowadays I think, well hey I would not have grasped the concept of fatigue prior to RA landing on my doorstep.

    However I was recently told about the spoon theory ...... have a read when you have a few grams of energy.

    livingwithra-nan.blogspot.c...

  • Thank you Joy really encouraging, especially as I've had a bad day today - sick, tired and tearful! I had to have my bloods retaken as my liver and kidney function tests are showing abnormal and won't know until tomorrow whether I can have my methotrexate prescription! Did you have any hiccups in your blood tests while stabilising and are you relatively well and painfree now?

    I'll check out the link you've sent and the video too.

    Thank you Barb

  • Hi Barb66,

    Just went back and had a look at the data. Ha ha - I'm a scientist so I have recorded all my blood test results on a spreadsheet. Ok, so in the early days one of my kidney function results was a bit high. The Consultant said it was down to the MTX. Also 1 of my liver function tests was a bit low, but this was only slightly out of range. Both settled back into the normal range within a couple of months.

    Nausea - now that was very tough indeed! I was told to take one 5mg folic acid tablet a couple of days after my MTX day, but that did not work. Then I was told to try taking 10mg the day after MTX day by my GP, that did not work. Then I was told to take 5mg for 3 or 4 days other than my MTX day, that still did not work.

    What DID work but it took 2 weeks before it worked was to have 5mg folic acid everyday except MTX day.

    When I read about the nausea, it said it does not come from the stomach being upset but that the MTX switches on a bit of your brain responsible for you perceiving nausea.

    I am a lot better now Barb66. MTX has not been a magic bullet but I am back on this planet and living a relatively pain free life.

    I also do other things to help. Two things for me that have made a significant difference to my RA have been aqua aerobics + swimming 3 times a week and acupuncture once a month.

    Hang in there Barb66. I very much hope MTX works for you!

    Oh I forgot to say the Consultant did say that if taking folic acid 6 days a week did not work then I could move to injecting instead as he said "that usually does the trick". But he asked me to persevere a bit longer and I'm glad I did.

    Sending you lots of positive thoughts.

    Joy xx

  • Thank you Joy you've made my day xx

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