Hi everyone, I have had RA for 11 years and been on humira/mtx combination for the last 5 years. RA now well managed generally but I do have some damaged/fused joints and secondary osteoarthritis so sometimes bad pain from that but not the RA.
But I am finding things very hard going at the moment, I am exhausted just from day-to-day things. I have glands going up and down, cuts on my fingers that take weeks to heal, aching all over, headaches, fuzzy brain, lost words. I am sure I should not feel this exhausted from what I actually DO! I feel like I am walking through treacle.
I try very hard (with 2 children) to not do too much extra but I don't seem to be able to get through the day any more, I just stumble along until I can collapse aching in bed about 9.30pm (so not as it if it late). Is this usual? Is this just getting older and not managing as much? I don't know, I feel like I am always complaining that yet again I don't feel well. All my usual mtx monthly bloods are fine.
I think I need to see the dr don't I? It is very hard when I look ok (mostly) but feel pretty rubbish. I was wondering if anyone else still had this complete exhaustion even though the RA is technically stable?
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I have had periods of total exhaustion in the past, especially when I was working full time. It is probably worth talking to the GP to check for anaemia or other problems. Maybe you have a Vitamin deficiency. But it may be drug related, or simply RA related.
I know that some of my meds are recognised as causing fatigue!
What to do? Find things to stop doing, if you can.
I invested in a dishwasher. I gave up all ironing (careful folding after drying is good enough for most things). On a good day I would make a double meal and freeze half for a bad day. I encouraged my children to be more independent, and be responsible for their own rooms. They even learned to work the washing machine.
Hope you find it's something simple that can be sorted. I think the exhaustion is the worst part of RA and the least visible.
Made me chuckle - I have also given up on the ironing! I agree, I will go back and see the Dr about it all and see what she says. Thanks.
Pacing is very hard I find it difficult , if you are struggling this much it is time to see some one x
What a star you are to manage at all with RA and 2 children. I'm fine until about 2 pm and I don't have children, I'd say you are doing very well indeed. But for better quality of life maybe list all the things that make you really tired and see which ones you can delegate or simply not do. I think food has a very big part to play & if there's room for improvement in your diet that might be a line to follow though i think it probably takes at least a few weeks of cramming in more vitamins and minerals to see the benefit - the fresher and lighter the food the better in my experience. I think it's easy to get accepting about fatigue with RA but there seem to be plenty of people who don't suffer from it too badly so believing that you could conquer it too is important. Sounds like I'm a fine one to talk given what I said at beginnig but I am full of beans early in the day at least & think paying a lot of attention to what I eat & getting exercise too seem to be my secret weapons in the battle.
Absolutely I think what you eat makes a big difference. I have also started back on the spatone iron sachets despite all my bloods being ok. Might give me a bit more energy if I am lucky!
Fatigue is absolutely the worst thing for me, and in the end what meant I lost my job. Currently I'm not really working (ie I'm doing a couple of little self-employed things) and it's much better, but I still know very quickly that I've overdone it - and "overdoing it" is only a fraction of what I used to do. It's worth going back to your GP/rheumatologist with this. My rheumatologist ran a full range of blood tests to make sure there was nothing else going on, added hydroxy to my mtx, and prescribed Vitamin D as I was a little bit deficient. At the very least it logs fatigue as a problem on your medical records.
Like you, I go to bed very early. 9pm is bedtime for everyone in this house. I also make sure my bed is comfortable and warm and that everything is set up for getting the best possible quality sleep. If your sleep is disturbed they can prescribe amitriptylline to help with that, especially if it's because of low-level pain. I also try to make sure I get out in the fresh air and have some exercise every day, so that I am properly tired rather than just rheumatoid-tired (if that makes sense). I know that's easier said than done when you're both busy and exhausted, but I try to make it a priority because it helps so much. (Also, because I have horses, it tends to happen anyway!)
I try to organise my day around my fatigue, so that I am as productive as possible. My golden hours are between about 11am and 6pm, so I try to avoid commitments early in the morning and get everything necessary done before tea. Once my brain gets into gear around mid-morning, I try and crack on with what needs doing. Before that I potter, try to read because it helps unscramble my brain, and do gentle undemanding sorts of jobs.
I feel for you, I really do. Research shows that for RA patients fatigue is as important a symptom as pain, yet it generally gets far less attention from rheumatologists.
You are spot on there with the overdoing 'being a fraction of what I used to do' comment! I guess that is why I am worried as I can't imagine working a full day (I need to go back and work and earn ££ in some capacity as the children are now both in school) but right now I literally can't see how I would physically manage. I find it amazing that I have had RA for most of my adult life now and just as I think it is all well managed something else comes up and whacks me. I will go back and see my GP and ask her to take a look at some bloods (again) as a start. Thank you for your thoughts!
I am the same just now re fatigue. I don't have a lot of pain with it and haven't for some time but find I can barely get out of bed most mornings and now I'm working on a new commission I am struggling to pace things. My OH said that today I must just rest because both my eyes are twitching all the time and I feel wiped out but I do think in my case it relates to winter and the meds rather than active RA. Good luck with seeing your GP. I take Amitriptyline but I think it's contributing to my exhaustion during the day time just now. Tilda x
Yes, every time there is any extra stress... travelling,new puppy,... xmas! Seriously though, I'm on benepali and low dose steroids and like u say I'm technically ok. But when there is any added stress , physical and mental , things flare up and exhaustion kicks in. I manage it at the moment by taking a higher dose of steroids for a couple of days... not ideal....
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