Apparently, RD/PsA causes fatigue, but I'm not sure what it is. Is it tiredness? If so I don't really get that. (Apart from the usual tiredenss of a mother running around , worrying about 3 children, a husband, dog and several chickens!) I do feel like I'm not firing on all cylinders more often as if my battery is running low and I have no physical 'power'. Lately, I've noticed too that my long walks and runs which used to energise me, feel like I've used up my physical exertion allowance!
Does that ring a bell with others here?
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Brychni
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Oh yes! Fatigue that you get with RD is quite different to normal tiredness and no one who hasn’t had it understands it at all. It’s part of the disease and well-recognised as such. Wading through treacle, brain fog, battery failure - all descriptions of the fatigue that sometimes just overwhelms you. I got it so badly at the beginning of my RA that I couldn’t be bothered to open my mouth to talk to anyone - the effort was too great! 30 years on and with mainly well-controlled RA I get it now and again and wonder how I ever functioned during working hours and trying to run a house (two children, dog, husband, no chickens). Now retired thank goodness!
It’s the most debilitating feeling. Though it’s more recognised now it’s also very often ignored by the medics - mostly because they’ve never experienced it - and is hard to describe how unable you become during it. Good medication and well- controlled disease does a lot to mitigate fatigue but when it hits you just have to give yourself a break, educate those who love you - and some who don’t - and wait till it passes. If you have it for weeks without a break you need to talk to your clinical team. Good luck and stay sane.
Thank you so much for this description - some of the info online associated with 'fatigue' is so vague. I have literally been in the middle of doing something and feel like I just have to stop.
That is well described A.....I always know if I am just I tired or if the way I am feeling is dear old R.A. reminding me that although I am well controlled...it is still lurking,
I didn’t recognise it at first....just thought I was being lazy or feeling my age.
Thankfully after 20+ years I don’t experience it very often now.
I was once told a certain way to know jf you have The Flu...or just a bad cold.
is ......If you see a £50 note on your lawn...if you have a cold........you run out to pick it up, if you have The Flu...you just roll over.
RA fatigue is just that....you feel as if you can’t take one more step......of course you do.....but it is really hard
Fat chance in my case of finding a fiver on my lawn- let alone £50!
I’m an expert on fatigue. Fatigue is my biggest symptom of RD.
I miss large parts of my life when I have fatigue. Mentally I’m slow and foggy I can’t concentrate or communicate I’m locked inside . I see what’s going on but am isolated almost like I’m outside my body and not part to the world .
Physically I’m heavy and slow . On a good day I could walk 2 miles at a good pace a fatigue day I could walk half that and be 45mins slower.
Fatigue at it worst can last weeks or months I can’t drive as I would be a danger my reactions too slow and concentration is none existent. When I get fatigue even without swelling, pain or stiffness I know my disease is active.
Fatigue was my initial problem before diagnosis (and a great description of the fatigue I experienced on a day to day basis J1707)
However, with hindsight looking back on my life I did have several bouts of extreme fatigue, aches and pains that several GPs put down to a busy lifestyle. As I am seronegative my bloods were always normal.
I do remember on several occasions just feeling I could not go on and had 2 bouts of 2 weeks off work, several years apart.
I've learned over the years not to push myself, but just kick back and let it pass. Difficult at times when you are naturally an active person.
Yes with hind sight like you I have started to realise I may have had these symptoms much earlier. My husband and I were talking about this yesterday he recalls even when I was in my twenties when I had “flu” I couldn’t move with tiredness and I always got the “flu” and now realise my flu fatigue feels exactly like I feel now. My middle son (27) has for years experienced bouts of fatigue ???? He lives in Canada next time he gets fatigue i will make him get tested.
I have had several bouts of 'flu' too when I just could not move, over my lifetime.
I always thought feeling stiff and achy was normal too !
After receiving my medical notes via a freedom of information request I found out I was first tested for RA in 1989, then again 2012 and 2016, none of the GPs told me I was being tested. Being seronegative everything was always well with bloods, but had I known what I was being tested for, I could have flagged it more to new Drs.
Snap I found out I was tested 18 years ago not told until I was sent to my rheumatologist 4 years ago . He said because I was negative it was dismissed but is now - quite recently recognised that RA can now be diagnosed when tested as negative . Don’t think slot of GPs know this.
Certainly does... then some! The fatigue of an uncontrolled or not very well controlled autoimmune or chronic disease is a couldn't-even-be-bothered-to-chase-a-£50-note-down-the-road tiredness, more than tiredness, it's disabling in itself. A good example in how low our batteries can become & how it affects our day, how we need to plan really, is the Spoon Theory, don't know if you know it? This is how it's explained by the originator m.youtube.com/watch?v=jn5IB...
That's exactly it! I was trying to explain to my husband that when it happens I don't feel 'washed out' or 'tired' or 'done in' or anything like that I just stop.
You’ve just described fatigue as I understand and partially experience it. My PsA still isn’t fully under control, and my fatigue for the last few days has been pretty intense again. It’s a mix of brain fog where I can’t find words, or come out with utter nonsense that has people giving you funny looks, sometimes I even struggle to remember my own phone number or postcode, along with a general lack of energy, and occasionally sitting down and feeling like if I blink I might lose two hours having fallen asleep in the chair. My 12yo calls them my accidental naps 🤦♂️😂 I physically have to get up and move if I feel like that and napping is not an option, but it’s frustrating as all hell when I’m still this side of 40. Even if I do nap, for me it’s a kind of tiredness/lack of energy that no amount of sleep helps with anyway, so I tend to push through where I can and have an early night instead. The mental slips as a result of brain fog were actually pretty worrying until I finally got my diagnosis and realised what was going on. Reflecting on the 15 years prior to being diagnosed, I can quite clearly look back and see sometimes prolonged spells of fatigue that coincide with joint pains/problems. On one occasion I went to my GP with severe fatigue in the middle of what I now know was my first major flare and remember her saying ‘well, your tests are all normal. Do you think you’re just run down?’ 👀😑
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Oh yes GPs, like you Charlie I now know I was having symptoms15 years or more before diagnosis. I went repeatedly to my GP with chronic fatigue so bad I couldn’t stand never mind putting one foot in front of a another often feeling like I had the Flu. Gp first said oh just a virus but after numerous visits then decided it had to be depression and I wouldn’t take antidepressants as I knew I wasn’t in the end she would just shrug her shoulders saying if you don’t want antidepressants there’s nothing I can do. I honestly thought I was going mental. It took a much younger pre reg on placement who thought it was RD... he was right it was such a relief . My fatigue was so bad I couldn’t stand or speak when teaching in class .
I used to get strange bouts of what I thought was going to be flu which would go with nurofen. Probably one of the earliest signs. I also used to get very tired, dizzy sort of tired which even I thought was just tiredness and that was exactly what the GP said when I went. that was in my 20s and when I look back I think it must have been bad for me to go the doctors but then it would pass and I would get on with it or find a ways round it.
Yes me too. It took a young trainee doctor who was sitting in with my doctor to say that it could be RA even if bloods were ok. My doctor then felt she had to give me a referral. This was months after all sorts of symptoms including extreme fatigue, dizziness, joint pain and flu like symptoms. She originally told me it was because I wasn’t drinking enough water!
I have seronegative RA and take 15mg MXT at the moment. I find anti inflammatories help with my fatigue and pain and have to take them every day. It’s one of the worst symptoms and sometimes I can be so tired I can’t even hold a conversation .
I’m seronegative too . I know my disease is active with just fatigue... hate it!!! I find gps especially the older ones dismissive of this disease. Can’t stand their automatic response to it... if I hear oh well it’s your arthritis.. so wish it was just arthritis
I understand the not being able to hold a conversation due to fatigue. If my mum knows that I am not too good, she rings for a chat to cheer me up and doesn't seem to understand that I am not able to hold a conversation for long. It is difficult for others to understand.
Oh I won’t let any member of family see her. Generally I ask for the placement GPs . They take my history from me not notes and leave no stone unturned any problems get sorted not left . I did see her and ask for an apology 😁didn’t go down well but made me feel better. This same Gp told my brother ( he was 27) that he had asthma when he complained over a number of months of breathing problems tight chest and sweating . He had had a couple of heart attacks.. when he went back after being hospitalised she said well your too young for heart problems ( we have a family history) my brother replied if you were a man I would punch your lights out. He was taken out if her care.
there's a GP I won't see any more for similar reasons. Honestly, I do understand that RD symptoms can appear vague and are often associated with other conditions etc etc but there is no need to be rude to patients. Every time I went to see her she asked about my marriage, any deaths in the family?!!! The last time I saw her I asked her very politely not to ask about my husband as I found it intrusive and irrelevant. she went very quiet and then as if she didn't know what else to do asked me to perform on the spot stretches and arm manoeuvres!!
Were it not for the fact that a diagnosis is hardly a victory I would love to go back and say 'see. I told you something was wrong!'
I just make sure I don't get appointments with her.
she is also very young and other appointments with her have seen her wasting a pregnancy test (for obvious reasons) and telling me with a knowing grin that 'it's quite normal to expel air from the vagina.' No sh** sherlock!! I am 49, have had three kids one C section and you're telling me about what's 'normal' down below?
Thank you so much for asking this question, I was diagnosed yesterday with arthritis and and pretty sure I've had it for at least a year and a half and the brain fog I've been having had made me feel like I'm going out if my mind ! I've been thinking it might the menopause but it's my PsA !
Some days are definitely better than others, it also give me a bit of anxiety as i didnt know why I was getting like this. Phew it's not just me (I mean this in the nicest way).
I'm due to start medication soon (been put on steroids for a few weeks) so just starting my journey xx
Good luck . It’s good to know that your not the only one and this is NORMAL for us. No one understands better than a fellow RD suffer not matter how understanding.
welcome to the group! This is definitely the place to ask about all those little (or big) things. You won't get a blank stare or look of incredulity like you do at the GP's.
In addition to the fatigue I also get the brain fog although in my case I think it is the madness of life! When I've been in sever pain I have felt afterwards as if I was in a time warp and as if it might have been a dream and that does affect my mental alertness so that probably is to do with the illness.
What medication will you be starting? Do you have psoriasis too? I ask as my diagnosis is undifferentiated inflammatory arthritis found on ultrasound in my wrists. PsA is one of the possible culprits. Although I don't have it, my grandmother did also a connective tissue disorder. I also get lots of pain in sacroiliac joint and coccyx which is apparently a feature. Luckily it is still quite intermittent with lately the pain getting much worse in fingers, toes, feet, hands ankles wrists etc and weirdly, under both shoulder blades - strange burning sensation.
It can take a while to get the medication right - I'm also new here - as I understand it and I'm about to start sulfasalazine in addition to hydroxychloroquine which hasn't done anything. Thing is, over the past few days I've felt quite good and as usual have doubts about starting the new drug! Just as I did when I was first diagnosed. 🙄
I hope you get some relief soon. Make sure you stay in touch with rheumatology if you have concerns.
I had my first consultant appointment yesterday and was told there is a slight possibility it could be reactive arthritis (because when my joints are squeezed I don't have alot of pain, although when released they ache like a bad boy) so Ihave been put on wl2 weeks of steroids, the Dr will get back in touch in a month and if I still have symptoms I will have to start sulfasalazine and its PsA.
Sadly my step dad died and it was really quite traumatic, my symptoms started then too, my consultant said big life events like this can trigger the disease (although I've had problems with my hand for a year or so before).
I don't have psoriasis either, think my sister does though (undiagnosed) but my symptoms are very much like yours ! I feel like I am walking on stones .All my bloods are -ve apart from slight raised crp.
So sorry you have it too although it has been so reassuring meeting others who have it and understand. Some of my friends have been a little weird and not so understanding about my arthritis, dont really understand why, maybe it's a getting older thing ? I am only 46 though !
It's like putting a puzzle together, l didn't realise the brain fog and fatigue was a arthritis thing, I'm learning so much xx
My last (current) flare pre diagnosis was a doozy, and I spent half of it genuinely but silently worrying I had early onset dementia. Forgetting my home phone number was terrifying when I didn’t know that it was all part and parcel of the arthritis. Now things like that are more of a frustration than a worry, and my bouts of using the wrong words at home usually result in quite a few laughs. In my case it does seem to directly correlate to my arthritis and how active it is on any particular day. On ‘good’ days with low levels of pain/pain in fewer joints, my fatigue and brain fog is generally a lot better.
This is such a fascinating thread.... I originally had a "post-viral" exhaustion feeling in December 2018 but hadn't had a bug so just put it down to being tired after a busy term. It was soon after that that I developed the finger joint swelling, stiffness and pain which took me to the GP and finally to a RA diagnosis. I then realised that I'd had the initial attack 30-odd years before after a nasty virus; it was treated with steroids and luckily went into remission.
However, about 12 years ago I started a difficult peri-menopause with many symptoms one of which was "crashing fatigue" and although HRT has helped me with most things, I've never seemed to have had the same energy levels as before or as friends of my age. It was actually my GP who mentioned that she wondered if that "crashing fatigue" was actually my RA rather than menopause but I discounted that as I had no joint problems then but from what some of you are saying, it can be a symptom in itself.
I'm very lucky in that the real fatigue that many of you describe doesn't seem to be one of my symptoms now but I have learnt that I need to pace myself and either do less hours per day (I'm self-employed) or be prepared to schedule a day off if I want to work particularly (for me!) long hours. I'm lucky in that I can afford to do that now but still look at friends and colleagues who can do more with a little bit of envy.
Fatigue and I have become best buddies these last few months 🙄Sadly made worse by my flare ups and now anaemia. Been on iron tablets for a couple of weeks now as prescribed by the GP and have felt slightly less fatigued but still usual RD fatigue. Last Sunday I physically couldn’t move myself off the sofa for hours. Blinking horrid. x
RA fatigue is beyond tiredness. It is a profound physical and mental lack of energy and motivation. It can be totally disabling, you simply can’t function..at it’s worse.
I have a confession to make and I hope you'll forgive but... when I first read your post, my initial thought was... "How can you not know what fatigue is, surely it's just another word for "tiredness"?"... but... I take it all back...
The comments here have really got me thinking about the distinction between tiredness and fatigue, and how much the latter (in particular) affects my daily life.
It's something I still don't think I've really come to terms with (I was diagnosed with RA in January this year) and although I can laugh and/or give myself a break for not being physically able to do something, I find it much harder to accept when I simply don't have the energy and tend to assume I'm just being lazy and/or not trying hard enough...
Thank you so much to you Brychni for raising this issue, and to others who have taken the time to comment... all of which has made me realise that perhaps I need to find a way to be a little less hard on myself sometimes
I agree with everything everyone here has said. With me the routine is fatigue, depression painful flare. At least with practice I know my routine and now just accept it
I don't have a predictable pattern in fact it seems to be totally random. Even flares don't appear to be how others experience them. I wake up every day with stiff and painful feet, that's standard! Sometimes back of neck. All my other pains seem to 'cycle ' 1 or 2 weeks with it moving around my body then settling in both sides. I've had acute severe pains on a few occasions too but they pass. What ALWAYS provokes a massive rebellion is a new activity. Yesterday evening when it was still warm we went to the pool in a river up in the hills. First time I've been. My daughter and husband swam but got I chatting to an acquaintance so pretty much sat down most of the time with my legs in the little waterfall. As I type, I'm head in hands with an ice cube over my eye for an oncoming migraine, feeling sick because of naproxen as when I woke up earlier I could hardly move. Also, don't know if anyone else gets6this but I find it hard to breathe comfortably. The air seems thick and my ribcage front and back feels tight. I often get this
I’m like you Brychni I have no pattern. I have stiff feet and ankles every morning intermittent pain in my wrists and hands.i could be absolutely fine then from nowhere any time of the days I hit a wall. Barely move FATIGUE it could last an hour or weeks or months. You got me thinking about breathing . I use to do yoga and Pilates and during the meditation at the end lying flat and trying to breathe Was so difficult I had to sit up to meditate and every now and then I find taking a breath laborious. I have had this for years . X rays show nothing and I’m not asthmatic
Hello Brychni, you'll find quite a bit of information about fatigue on the NRAS website, including on how to manage it. Nobody who hasn't experienced it can really explain what affect it has on a person. All the best.
I have tried to explain fatigue to people. They don't get it. They think they are fatigued after a busy day or a night out. You have to experience it to know what it is like. Basically it wipes you out. It is far more than tiredness. x
Fatigue is a major factor for me. I’ve turned back on journeys because I’ve realised I’m not safe to drive, gotten to the point of being unable to do anything except crawl into bed. The amount of times I’ve been unable to get my daughter to nursery is heartbreaking to me.
I find it really difficult to recall words when mid conversation, forget people’s names (even family) and sometimes cannot get the words out because I’m so beat. It’s difficult for people to understand, my partner of 10 years still doesn’t get it. I’ve got 1 friend who does and she’s a lifeline to me, most others have gotten fed up along the way with me cancelling plans last minute or not having the energy to pop round for a coffee etc.
Rheumy understands how much it affects me and is sympathetic. Unfortunately it comes as part of the territory for most of us, try to educate those around you, give them the spoon theory or at least be brutally honest how you’re feeling. Don’t try to be a hero when you’re in the midst of it, it won’t end prettily, listen to your body, look after yourself when you can.
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Severe fatigue today
Brain fog
Extreme fatigue
Fatigue & concentration 
Is this 'normal' for RA??!!
