Tiredness , is it still RA

Hi everyone. I wonder if you can help me. Following my diagnosis in April I am on now oral MTX 22.5mg weekly. And I have to say it is definitely doing a great job with my joints. I still have a couple of tender knuckles and slightly swollen feet but am much much better than I was. However I was expecting that the fatigue would improve too, and it just hasn't. I am absolutely hanging nearly all the time and have even had to have a sleep some mornings. I definitely can't get through any day without a kip. If I try I end up brain dead and terribly irritable by late afternoon and just can't function. Should I be expecting the MTX to sort the tiredness out too ? I am also slightly anaemic but struggling to get a decent dose of iron from the GP. So I need to understand wether it is more likely to be the RA than the anaemia. Has anyone else found the tiredness persisting even though the joints are responding well?

27 Replies

  • Oh the dreaded tiredness, I take methotrexate , sulphasalaseine and hydro chloroquine (all spelt wrong!) and a biologic and still I have the unrelenting tiredness . I've found though, that when it washes over me, then my body is saying u need to rest. Nras have a publication called fatigue. It helps u to understand what & why it's happening. Your immune system is constantly fighting, this uses energy, thus u feel fatigued. Also, inflammation causes fatigue as well. You take care.

  • Oh Thankyou. I will have a look for that info about fatigue. I was expecting that the tiredness would clear up too you see. Ah well. Life could be worse !

  • Hi

    I've been anaemic since Feb, never above 11.5 (they like it to be at least 12). GP has done a test to see if it's iron deficiency or an absorbtion problem and it's neither, it's the RA. They won't do anyhting until it goes below 10.5, which it did once but came back up again. It's a very common problem with RA, hence the fatigue I'm afraid. Good that the MTX is sorting your joints though.........

  • Yes the MTX is doing a great job with the joints. But the tiredness is relentless isn't it. I will see my GP and have a chat about it. Thanks for replying xx

  • That's odd, because anaemia is a common problem in RA. Mine is also borderline and my GP has me on a course of iron supplements. A vitamin D deficiency can also cause fatigue and is also a common side-effect. That can be tested for, so it may be worth asking.

    For me, MTX was a major cause of fatigue and it improved when I stopped taking it. However, as others have said, a degree of fatigue is unavoidable even when other symptoms seem to be quiescent. I was a little bit more active today than normal and I have just had a two-hour "nap." :)

  • Of course. I have had vitamin d problems before and had totally forgotten that could be playing a part. I will ask to have that checked. I am borderline anaemic and have been on one ferrous fumarate a day but that isn't helping at all. Thanks for that x x

  • My vit D is checked quite regularly, always in the high 80s as I have lots of holidays. As you say it's all rather inevitable with RA, jus a question of degrees........

  • I've got to say that I feel pretty tired most of the time too. I'm afraid that fatigue is common with RA but I've made an appointment to discuss it with my GP in case there could be something else causing it. I don't know how much sleep you get but I now make sure I go to bed early and get my full 8hrs as I just can't manage on less. I hope you feel better soon x

  • Yes I am in bed by 10 every night and get up at 7. Some mornings I get back from walking my beautiful doggy and am asleep again by 10 for at least an hour sometimes two I feel like I am being a bit pathetic but I can't seem to work through it

  • I do feel for you, it's a horrible way to go through life. I think a check up is definitely what you need. It wouldn't hurt to have your thyroid hormone levels checked as well. x

  • I have just made appt with GP. Sadly not until 7 nov! But I feel more confident now about talking to him about it. Thankyou x Sally x

  • You're not being pathetic honey, we all know what dreadful tiredness this complaint brings on...I'm on the bed at the moment with a hot water bottle on legs (really hot, takes away pain) I am just about to close my eyes. I hate the tiredness,it's debilitating , it stops me doing so much...let's all hate the tiredness!!! Sending you a smile. Maryx

  • Aw thanks mary. Snuggle up and have a nice sleep xxx Sally x

  • I'm afraid that even when the inflammatory marker come down the fatigue seems to persist. Like you `I have a sleep, early afternoon for me, to be able to manage the day. The big thing that helps is Pacing - interspersing activity with rest.Pushing yourself through it actually makes things worse! If you haven't seen an Occupational Therapist yet then ask your rheumy team to refer you. OT's are very good on Pacing and have all kinds of helpful hints and tips on ways of making daily life easier:-} There is also as someone else has mentioned a very good NRAS publication on Fatigue that you can download from the website.

    Cece x

  • Hi there. Why is it that the fatigue persists even when inflammation is down? Do you know? I just read the leaflet on fatigue and it says that fatigue should improve as inflammation goes down. Confusing isn't it!

  • My rheumatologist said that whilst there is some improvement that the fatigue is very hard to shift and that it's the systemic effects of the RA. So I can feel like I've had a nasty bout of flue a lot of the time:-( As I said though, the biggest thing that's helped me has been Pacing, learning to conserve energy for the things that I really want or need to do. ie an evening outing would be preceded by an afternoon rest and followed by a no appts morning the next day. But it does seem to be a very individual disease - as in there are huge variations in how much it affects different people. Hope this helps,

    C x

  • Thanks Cece. I am learning to pace myself like that. But was thinking that I was being a bit pathetic and that the tiredness should be perking up alongside the joints. Obviously not! It is really helpful to know that it's not just me. Thankyou. Sally x

  • Hi

    The tiredness never goes away. I think it's part if the disease. This is where pacing becomes important. You will learn to manage it better as you become aware of your own disease limitations.

    Well down for coping with mtx orally.

    Sci x

  • Yes the MTX hasn't been a problem at all. No side effects whatsoever. That's why I was surprised that the tiredness didn't ease as everything else hemmed to be going so positively! Ah well x

  • Yes I will mention it. Next appt not for six months. I didn't mention it last timeas I think I have been in a bit of denial about the tiredness thinking it wasn't real and it was just me being pathetic but having had all these lovely responses I feel more confident to mention it now x Sally x

  • Hello the anemia will make you tired so will the mtx and the disease itself. I had anemia before and it was the most exhausted I have ever been. I would try drinking plenty of water take plenty of rest when you need it and try energy boosting foods.Green smoothies give me a bit of energy. Taste grim though.

  • Green smoothies! Yeeuch! Sounds very grim. What's in them?

  • Yep, tired here too. I changed rheumatologist because the first one wouldn't acknowledge that this was still a problem even though I was supposedly so much better. The new one hasn't fixed it, although he did say that hydroxy would help. Not sure it did because I had some drastic life changes because in the end fatigue was what stopped me from working. I couldn't string two thoughts together until 11am, and was fading away again by 4pm. I'm much better now that I have control over my own time and can pace myself. I still have days when the sofa is the best place for me. But I also have days where I can do anything I want to - ride a bike, ride a horse, walk the dog for miles. It's being able to choose on any given day that makes the difference. I rarely allow myself to get worn out because it takes so long to recover from it.

    Dotty x

  • Thanks Dotty. Nice to know it's not just me. X

  • As soon as I told the Rheumy about the extent of my fatigue, he took me straight off MTX. He said there were so many alternatives it wasn't worth persevering. Three years and many drugs later I'm actually wondering if I should go back on the MTX because it really was great for my joints and I can't remember if the fatigue was worse than it is now... However, I do think it's always worth trying new drugs because you might find one that suits both your joints and your tiredness. And you can always go back on MTX if ends up being the best for you. Good luck!

  • Oh right. That's worth knowing. MTX seems so good for my joints it would be a shame but I suppose I need to look at all the disease symptoms including the tiredness when thinking what treatment is best x

  • Hi, yes, get the fatigue very often - as has been said, your immune system is constantly fighting so you are feeling the effects of that. RA can cause anemia, but if you have bloods every month for the mtx that will show up and your GP should give you somethign for it.

    i take quite a few supplements that I think help me with general energy and wellbeing and when my body says rest, i do rest. The NRAS publication on fatigue is very interesting and helpful, so do get on the website and download it if you can. My mtx really helps the joint pain and inflammation but the fatigue is strangely very often harder to conquer. Luckily i am retired now but it was more difficult to combat the fatigue when i was working, so if you can have a nap and feel you need it, do it and you hopefully will feel refreshed.

    Lynn x

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