I just wanted to get some advice on how some of you deal with the physical & mental fatigue that comes with RA. After a few weeks of annual leave, I am now back to working from home as a lecturer. I really needed the time off but am struggling day to day being at my desk from 9-5 because I can’t maintain concentration and I feel physically and mentally exhausted by midday. It is stressful as I need to take big breaks out of my day just to rest which means I’m not using my time efficiently.
I exercise regularly and aim to get 7 hours of sleep a night but whatever I do, I am in a constant state of exhaustion at the moment.
My diet is very well balanced and I take some supplements. Does anyone have any further advice?
Thanks
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BethRidout24
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18 Replies
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Oh boy fatigue. My worst symptoms of RA. If my fatigue is bad it’s normally a sign my disease is active when I’m stable I’m not too bad but i do get tired easily. Unfortunately I have never found the answer. When I’m fatigued I feel like I’m moving through treacle and detached from what’s happening around me. I can’t drive as my reactions are too slow and my concentration poor. I reduced my hours but on bad days I still struggle . Sorry I haven’t helped but your not on your own.
Thank you for telling me your experience with it. It’s a hard feeling to describe but I too get severe brain fog where I find myself not being able to string sentences together and my body feels like lead. My concern is that it will start to affect my work when I return to being on site at the college again. For now it is manageable at home to a certain extent. I wonder whether it’s something I should inform my workplace about. I just fear that I will be treated differently.
Difficult question I would tell them and talk to HR . I would also let your Rheumatologist know maybe a different medication may help if disease activity is the cause of your fatigue.
BethRidout24 this was my worst symptom and had brain fog and exactly as you. I had to go to 6hr days 3 day week, no standing and 2days on 1 day off 1 day on and even that was a struggle. You need to talk to line management/HR as you need the support as I know I made mistakes due to my bran fog and it just meant by the time I got home I was wiped out. I am only 'lucky' as still on furlough as I know going back going to be an issue.
That's a very long day for anyone let alone someone with RA. Are your employers aware of your situation? Maybe you need to consider asking for reduced hours until you get onto the right meds 🤔
Slightly random but I find that because RD now takes up so much time and mental energy that it's difficult to give a toss about anything else. Blood tests, appointments, pills, x rays etc and my pack about methotrexate came with a booklet for me to fill things in! Paperwork!!
Sorry BethR - are you newly diagnosed? I was diagnosed with an autoimmune disease at the end of last year but not fully confirmed which one yet - however, they all seem to have fatique as a main symptom. As J1707 says fatique can be so debilitating and I agree that on some days I shouldn't drive as my concentration is so poor.
I know exactly what you mean about it affecting cognitive function /concentration. When I am really fatiqued I find word choice a problem. I might be in the right filing cabinet, as it were, but I select the wrong word, e.g, 'I won't need to wash the garden' rather than 'water' it. I become anxious that when out in social or other circumstances that I will make these 'blunders'. Friends know, so they just laugh with me.
Alerting colleagues may take some strain off you. There is a guidance leaflet on NRAS for employers as it will be particularly difficult if you are being asked to lecture - although many lectures are now being done online as a result of Covid. Are any of yours?
Have you sought advice from Occupational health? Pace is crucial and I agree the hardest thing to do when you are used to working many consecutive hours. It is however, a vicious circle, the more you fight fatique the worse it gets, the more I don't pace myself the more I can't concentrate, even on things like playing an instrument. There is no magic bullet that I have found yet but to be kind to myself and listen to my body and to stop at the point when I think - I'll just... when my mind really wants to stop or sob.
The good news is that the more controlled my disease is the less impact it has fatique levels and consequently on what I want to achieve. Not much help perhaps but maybe it helps to know that you are not alone.
Hi, I completely understand where you are coming from with this. I work full time in a hospital but am currently working from home and can just about manage at present to get through my working days. I usually have a 3 hour daily commute on top which I currently don’t have thankfully.
I had a chat with our HR person who is lovely and she gave me options to what I wanted to do but she would support me either way. I did have an assessment via occupational health and this was really useful as it looked at my working hours, flexible working hours, specialist equipment such as chairs and dragon dictate software as well as the possibility of working from home for some of the week and different plan of action when having a flare up. My employer is very supportive of the recommendations. This all happened just before lockdown though so most things are on hold currently. However I will continue to work from home for a while to come and even when able to return back to the office will only do so for two days out of five days. My working hours are flexible, and will apply to access to work for help with the equipment needed.
Access to work is a great scheme for anyone with a long term health condition and they can provide recommendations such as specialist equipment and getting to and from work as well as a PA to help with admin etc. NRAS have some great information on their website about discussing your condition with your employer and lots of fab advice about occupational health assessments too. Would be worth a call to their helpline and or having a peek on their website. If I can help further just let me know. Best wishes Gail x
You're not alone. Brain fog, fatigue, slow reaction times and more all affect me when the RD is active. I have not found any relief other than to rest, pace myself and just 'go with the flow'. Easy for me, being retired now, but so difficult for those still working. Excellent advice from so many in that difficult situation already, I simply wanted to express sympathy and reassurance that this is normal for so many of us. It can and does get better with the right meds to control the disease. Wishing you better
Hi Beth. I struggle massively with fatigue also, believe me you are doing amazingly to work 9 to 5! The only thing I can say that I have found to help is to make sure I take frequent breaks of activity. Even 15 minutes sitting quietly with my eyes closed (or ideally lying down - not always easy!) can make a huge difference to my ability to get through the rest of the day. Also I believe my need for nighttime sleep has increased since diagnosed with RD. Whereas previously I would manage quite happily with 6/7 hours a night I now seem to need more like 8/9 hours to feel even half human!
Only other thing to mention is that as well as being an indicator of disease activity, increased fatigue can also result from medication side effects - I recently reduced methotrexate from 20 to 15 mg and I feel my fatigue has improved somewhat. Also if not already done so, it may be worth asking your GP to check bloods for other things which can cause / contribute to the feeling of fatigue, iron levels (anaemia is common with RD), B12 and thyroid being the usual suspects.
Hi, I don't have anything useful to add to combat fatigue, but just wanted to add yes, fatigue is my most debilitating symptom. Some days I just can't do much at all other than sit on the couch. Even holding a conversation can be a challenge.
You mentioned you try to get 7 hours sleep per night, which is good, but not a great deal of rest per day for someone with RA. Even on a good day, I would need several more hours off my feet, resting to get by. It is really difficult when working, I know but some rest time in the afternoon might ease things off a little.
Hi Beth, yes I struggle horribly with fatigue. I had 4 part time jobs before I started with RA and I've now got two as I couldn't keep up the pace. Working from home during lockdown has really helped, I can pace myself better, do work ahead of time, work longer hours on the days I feel better. I honestly couldn't work full time hours right now but they're still trying to get my RA under control so I'm hoping that things improve with different drugs. You need to have a conversation with your HR dept. Make sure they understand it's a systemic disease and that any reduction in hours or change in ability to work as long is likely to be temporary. I hope they are supportive as they should be. I find these days that if I battle through the fatigue and get the job done I get the payback of a really bad flare a few days later which can knock me, quite literally, off my feet for a couple of weeks. Good luck x
Thank you for everyone that has commented and shared their story. It’s comforting to know other people are experiencing the same.
Because I’m only 22, I find it hard to slow down as I feel like my age should mean I’m superwoman. But forget I need to take care of myself in the days I have no energy.
I have spent a month on prednisolone which wasn’t as bad as some people suggested and am now waiting to be put on hydroxychloriquine as my first DMARD. Maybe as I’m in between medications that’s why my flares are bad.
I try to get more sleep but on top of RA I’m also naturally a terrible sleeper so unless it’s a weekend I find it hard to get more than 7 hours.
I have informed my work of my medical situation so should I need to cut back hopefully they will be understanding. I was so excited to challenge myself in my career this year but sadly I feel like I need to slow down despite only being at the beginning of adulthood. I’m hoping once on medication for a stable amount of time, I will be feeling much better.
I also am pushing for blood tests as soon as I can.
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