Fatigue: A case of good management? Or do meds help?

Hi all, now my pain is reducing I'm realising how much fatigue affects me. Originally I thought it was the pain tiring me out. Now I realise the fatigue is something that needs managed sort of separately from pain issues. When pain started to reduce I stupidly took that as a go-ahead to do things nearer my previous pace. Nope, I got dizzy and exhausted. Now I can manage it a bit better, the trial and error continues but is this basically how it continues forever? Are meds better for controlling pain and fatigue is about management? Obviously everyone's immune system behaves differently but I'd love to hear about strategies you've figured out to deal with it. For now I do one 'important thing' each day (on top of my daily walk as far I can manage) e.g. a friend visiting or clearing out paperwork etc then I take it easy the rest of the day. I now recognise an energy drop coming on and just pause or lie down. I'm hoping I can somehow build this up over the next month to get back to work as soon as poss. At first I was paranoid about eating too many calories being relatively more sedentary and tried to stick to 1200 calories a day focussing on protein - I didn't realise this was making me more ill till one night I was taken out for dinner and I felt energised eating something more substantial. I then realised how much additional energy my body needs to deal with arthritis. I now have proper meals and it's made a difference. This is such a balancing act between rest/movement/sleep/nutrition. Hope you're having a good weekend :-)

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Fatigue can be caused by many things in RA but in fact you can do a bit of detective work on this and try to address these possible dysfunctions or deficiencies. I would start with getting my thyroid function checked. Up to 30% of patients with RA have some degree of low thyroid function where fatigue is a typical symptom. Fatigue is also caused by estrogen-progesterone imbalance when estrogen is dominant. By fixing these, which is not difficult, it may have abig effect. Good luck.

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Just occurred to me, what percentage of older people without RA have low thyroid function? Isn't it incredibly common, and usually quite minor?

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Hypothyroidism is even more common in RA than in the general population and is actually both caused and increased by RA meds. This the reason why doctors recommended to check thyroid function not only when patient is diagnosed but during disease followup. CVD risk increase with hypotyroidism is one of the worries.

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Do you have a reference? I can't find one.

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I have in fact many! Need to dig them up. Will get back to you😊

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Hi Helix

I have an underactive thyroid. Mine is another autoimmune condition.....I had it before RA. I think the reason it seems more common in those with RA is that auto immune conditions often come in clusters.....unfortunately for us. We have a selection of auto immune conditions on the female side of our family.

It is minor as long as it's controlled with thyroxine......if untreated it can be more serious. We get free prescriptions because we need thyroxine for life.

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Yes autoimmune diseases do seem to travel in groups. So far I seem to be lucky to only have one! I'm always just curious to understand as much as I can about this weird world I've been forced into.

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Hi FatJoints. To my mind, fatigue is one of the most frustrating aspects of this disease. I've had crushing fatigue from uncontrolled PsA, the type that makes any sort of normality impossible. But since starting meds over 5 years ago it has lessened.

I think the treatment does address fatigue but all too often it doesn't abolish it. Management is complex, something we learn perhaps but I'm still learning! Exercise helps with fatigue, I am pretty sure of that from my own experience, from what rheumys have told me and going by what others have said too. There again, if we constantly push ourselves to the limit in any way, fatigue and pain are likely to worsen. It is, as you say, a balancing act.

Getting the disease under good control is key. For symptoms that remain, lifestyle adaptations are the way to go. I think it is vital to know ourselves and that is why, in some ways, chronic disease can make us more switched on, more real about who we are and what we want. For example, I find myself getting very resentful sometimes when we have guests. Realistically I'm just not going to tell them to cook for themselves and do their own thing, yet extra cooking and taking them places can quickly push me over the edge. Yes, planning to minimise the extra work is essential and I'm getting better at that. But I also have to acknowledge that socialising is important to me, that there can be a price to pay and then work out how willing I am to pay that price. I would add, though, that nothing is nicely predictable with this disease .... you may have great times when you almost forget what fatigue is and then absolutely knackered times that seem to have no explanation whatsoever. 'Fun' eh?

If I had to summarise I'd say know yourself as best you can, know your limitations but don't reign yourself in so much that you don't achieve or do at least some of the things you love doing and need to do. And then, as addition to eating well, stick with an exercise regime that works for you.

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Thanks postle2 Absolutely, this is so true. I feel like a baby sometimes haha I consciously go through the list... do I need hydration? Fed? Exercise/fresh air?/sleep? Etc. You're right, you have to be switched on to your needs without being paranoid about every little thing which is, in turn, exhausting lol. It has positives like I only prioritise things that are truly important, in a way I like that aspect. Ah, the joys but yes I've been prioritising seeing friends even if it takes me a day of conserving energy and have learned to delegate and I find visitors are happy to do things like make their own teas and coffees etc. I'm aware of the potential to lose my confidence in certain activities and am trying to gradually build up what I can do and experiment with my limits within reason.

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It sounds to me as if you have a wonderful angle on all of this. There are a few phrases I found online in the early days of seeking / getting a diagnosis that have stayed with me, regardless of whether or not they are true for all, simply because they rang so many bells with me. One was that 'falling asleep in cars' was a symptom of PsA! I've never seen that since and it is surely overly specific, but on one long drive from Aberdeen to Shrewsbury I stopped maybe 15 times for a short nap. The other was that many people with PsA find the constant need to manage their own disease overwhelming. I am sure that applies, at least sometimes, to many of us. (And from what I hear it is just the same with RA of course).

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Thanks! Sounds like your you're managing things well too, I still don't feel I'm up to driving at all so I hope I can build up to that :-) That's really interesting you mention the napping thing. Something that occurred to me, I've always been a bit of a snoozer throughout my life. My friends have always joked about me 'resting my eyes' so I'm wondering whether I've always had an underlying fatigue issue. I also read that PsA sufferers are prone to stomach issues which I also have so I'm very interested in all these jigsaw pieces. I've never really joined these dots before but I suppose now's the time.

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To me planning is the key. I used to be the sort of person that did everything in a rush at the last minute - but no longer! My fatigue has improved hugely as the disease has been better controlled, and as my general health and fitness improved, but it's always an issue even if in the background. So strategies i took up when things were at there worst I still keep just as a preventative measure.

First off I redefined what was essential - so things like ironing I no longer bother with but daily exercise is a must. I minimise other things like the duvet cover only gets changed every 2 weeks now. List are good to stop making unnecessary journeys, and I'm more careful about breaking up tasks into small chunks. I will rarely do anything (apart from walking) for more than an hour at a time. So if I'm sat at my desk for an hour I'll then do something standing up for a bit, and do something that means I move, and then sit down again. And all at a modest pace! As postle says, you learn about what works for you and what doesn't!

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This is so true, changing the bed is knackering! Same here e.g. with housework I used to let it go up to a point then whirl around in a rush getting it all done in a one-er. Not now, I just have to learn to be more disciplined and energy-efficient which is no bad thing in a way. Absolutely, the ironing can wait :-)

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Such a great post, with fatigue and pain it feels like which came first 'the chicken or the egg'. I find if I'm fatigued pain increases and if I'm in pain fatigue increases.

Having been in the situation which I'm sure we all have where pain is uncontrolled I certainly appreciate the link that pain causes fatigue. But then so does our horrid disease. Since being relatively pain free from Humira I have found the fatigue has largely gone. There are a few caveats to this though. When I first got Humira I thought it was the magic answer to going back to my previous life (sans disease) not the case.

I do therefore think that proper sleep, good diet and regular exercise has to go hand in hand with managing fatigue. I also know when inflammation is higher in my body because the fatigue begins, that cba with life feeling.

My experience is the balance and prioritising have to continue despite pain control, hope that helps and you manage to control fatigue ☺️

Terri xx

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Hiya, that's so true about thinking you can go back to the way things were when something improves - tricky to accept. I love getting wee flashes of feeling 'normal' and having a brief dance about the living room. So true about getting proper sleep, I got a Fitbit for that purpose - to keep an eye on sleep and monitor improvement in how far I can walk. I was never bothered about fitbits before but now it's quite handy to get a bit of routine while I'm off work and it tells me to go to bed at a reasonable hour lol! Sounds daft but it works for me :-) Best of luck for your challenge! x

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Thank you for posting this,

I too suffer badly with fatigue. 2 weeks ago I went on a camping holiday which involved lots of costal walking, which I love. I was determined to take part in every activity and not let my PsA stop me, I was in the frame of mind of "sod it!" fed up of how this disease has changed my life.

Wow! Have I played for that decision this last week! Increased joint pain I sort of expected but the fatigue was crushing, I could hardly get out of bed, sleeping for most of the day and night. I'm starting to come out of the other end and gaining some sort of normality (whatever that is).

I'm now resolved to listening to my body, pacing myself and having to accept my situation. I think the acceptance is the hard part for me, but the alternative is a life under the duvet.

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Exactly, I like the outdoors too and sometimes I just think I'll just get on with what I want to do regardless then I'm done-in. It's infuriating. I'm so glad we can all share these experiences though :-)

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Welcome to the world of juggling! One activity per day is a good rule of thumb! For me, known as the energizer bunny pre PMR, sometimes the walk is it! Even though I'm new at this, I think pain and fatigue are tied together. Rest helps pain. I'm weight obsessed but I eat small (sometimes not so small) meals about 6 times a day. Protein, mostly chicken, fish, steak once a week, vegetables, fruit, yogurt and cottage cheese. No alcohol. By keeping it simple (big treat is oatmeal) on 25 mg Pred I lost a few pounds.

5 weeks in, I could not add work into the mix. I hope you can have suffient time resting before you go back to work. Can you work from home or readjust to part time? Health first my dear! Set priorities to live more comfortably.

Hope this pep talk helps you as much as it helps me. Easy to advise others as we navigate this bumpy road!

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Aw, thank you. It's important to Pep talk yourself as much as anyone :-) Ach, you were clearly someone always on the go and now it's a big adjustment - it's pants eh? It is a total juggling act and it's so unknown, there's really no way to know whether something you do today will cause you more tiredness the next day. Little and often sounds good to top up the fuel with eating, I'll give that a go. I was off for 4 weeks, then extended to 6 weeks and I do worry a bit that I'll not be able to go back to full time but there are always options. As you say, priority is health - couldn't agree more but it's probably the unknown that gets me most and that I haven't a clue what's a sensible amount of time to be off. I am learning patience haha, no bad thing. xx

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Let me know how you do in all areas, food (my greatest interest), work and time management.

Smile a lot!

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I have terrible fatigue and over the 5 1/2 years I have been sick have had to learn to manage it so I don't conk out before the end of the week or working full time is more of a struggle. In saying that I find I have to keep adjusting how I manage as this disease keeps changing. Being adaptable and not feeling guilty if I spend a weekend in bed is one way I manage it.

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That's such good advice thanks, it is definitely a case of taking each day as it comes and rests as needed. No two days have seemed the same so far, so true about being adaptable.

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Absolutely. Today my little finger on my right hand wouldn't bend and was so psinful. That was new! Haha You just nevet know what each day will bring. Take it easy, be kind to yourself and go with the flow. Hard for me as I have always been such a busy person.

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I must say it's great hearing everyone's strategies, I'm picking up some really good advice. Big thanks to all xx

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I have found that although the medication has helped with the pain, which restricted my movements, I now have to suffer the drowsiness associated with taking the combination of meds. So it is a compomise and like you arrange one event a day as I get very tired if I do to much, I need to take an afternoon nap these days, more sleep than nap. The steroid injection affects my immune system for about 4-6 weeks after, Murphy's Law rules and I come down with something which goes straight to my chest :(

I manage my pain with the meds and how I now have to structure my life, but that doesn't stop me trying to live it to the full, even if sometimes I go too far and suffer the consequences, like getting a hangover for the first time, I say never again and still do :)

Life is for living and I will do my utmost to do so.

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