Hello everyone, here again looking for advice with regard to fatigue. As most people on here fatigue is a real issue. Some days are quite good but other days I feel like I'm wading through mud, barely have energy to speak and my eyes feel like lead weights. I'm having a period of it now and given that I'm a teacher it is proving really problematic to get through the day. I was driving to work at 6.30 this morning, dreading the day and, Tuesday is a good day as the afternoon is non teaching, just planning and marking. But today I've just come home, I'm sat on my bed reprimanding myself for giving in. I need to shower and wash my hair but I don't know where I'm going to get the energy from,. My husband will come home chatting away, full of life and I just feel bad as I'm must just come across as miserable. So my question is, what do you all do when you get to this stage? Should I just push through it or take some time out? I'm dreading tomorrow knowing I'll get up feeling just the same. Sorry for the essay, but I'm feeling beside myself today.
Fatigue : Hello everyone, here again looking for... - LUPUS UK
Fatigue
Trying to battle through the fatigue of autoimmune disorders makes things worse, if you get past a certain stage, it becomes increasingly difficult to recover and it becomes an ever descending spiral. This is a post I wrote some years ago - also on the lupus forum but this is the link I have to hand:
healthunlocked.com/pmrgcauk......
Thank you, the spoons analogy is spot on, I've sent it to a couple of my friends - will show it to my husband later. I need to re-evaluate my work life valance d
On our forum we have recently had a discussion about reinventing ourselves after diagnosis of an autoimmune disorder - and a couple of teachers had eventually had to admit that they couldn't cope with doing their job to their satisfaction and had to retire. Of course, we are mostly older, PMR doesn't usually manifest until 50 or so but even so, we have increasing numbers who still have a considerable working life ahead of them and want to work. But often work and living decently with an autoimmune disorder just don't match up. There are ways of working part time without losing too much income - because, of course, for many that is critical. You do have to consider how much of you you can or want to give to work - because the family will come up short. But a great deal of thought is required.
Yes. It has suddenly dawned on me this afternoon. I'm 62 and got my diagnosis of sjogren's with secondary Fybromyalgia 3 months ago. Though I had had an initial diagnosis of UCTD with secondary Fybromyalgia 18 months before afyer struggling for several yesrs. In my mind I thought thst once I started medication everything would go back to normal... I have no work life balance. I've gone from being superfit, slim, confident and sociable to 'nothing' . I know I have some decisions to make. Thank you for your help x
In your place I would be seeking retirement on medical grounds. Being retired isn't the end of the world and if you can afford it - I'd tell everyone to go for it! We retired early and did other things to earn a living. Freelance or locuming or whatever, YOU hold the reigns and if you aren't up to it, you say no,
Management of autoimmune disease is a mix of many factors - medication yes, but lifestyle changes and adjustments are equally as important. And they can be very difficult, with the best will in the world your OccyHealth people struggle to provide adequate opportunities.
Is there a difference between AI associated fatigue eg as in all forms of lupus, Sjögren’s, PMR etc vs ME (myalgic encephalitis)/CFS (chronic fatigue syndrome)???:
webmd.com/chronic-fatigue-s...
If one’s fatigue is not diagnosed as ME/CFS does one lose compensation?🥹🧐
How would you tell if the mechanism is the same when they don't know what exactly it is? I suspect there is an effect on the mitochondria - and that is the case in Long Covid it appears - but my attempts to get studies done fell on deaf ears, mainly because it required a muscle biopsy and they didn't think patients would agree. If it contribites to knowing more about my disease I'd be queuing up!! But there is some thought that ME/CFS may be autoimmune as well.
As for compensation, afraid I haven't a clue, never qualified for anything me!!
sorry to hear you are feeling unwell. I find the best thing is to rest, listen to your body. If you don’t you may get a flare which will be longer to get over.
I understand how you feel, I find it hard when everyone is bouncing around and I just feel like going to bed. Look after yourself, it’s the best way forward.
Do they know at work about your condition, they need to make allowances for it too?
Hope you feel better tomorrow xxx
Thank you, it makes me feel so emotional when I talk about it, normally I just stay quiet. I had a meeting with OH last week and they acknowledged that my condition would likely be classed as a disability. I also met with my manager and, to be honest apart from giving me a soft touch laptop, there wasn't a great deal he could do, other than try avoid giving me classes to cover. The thing is, I know I'm not performing well, in my eyes anyway. I have a good reputation but I'm finding it harder and harder to keep up. I dropped down to 4 days last year, but I still find that I struggle, all I seem to do is go to work get through the day and come home; that's my life in a nutshell 🙃. I think I was expecting too much once I got my sjrogrens and Fybromyalgia diagnosis and started medication. A lot of my symptoms have settled, apart from the fatigue and sinus/headache. My consultant gave me a steroid injection in November and that really helped for about 6 weeks. I'm thinking I might need to drop down to 3 days and see how i go from there xx
I’m so sorry you’ve been struggling with this fatigue and bottling it up and pushing through. I hope coming in here and vocalising it and being validated is helping. I worked 3 days a week for a few years with an agreement that I could have a protected 30 minutes at lunchtime with a private place I could lie down and that helped me get to the end of the day. Eventually I had to go to half days, with a day off in between and the next step was ill health retirement. It might take a few years of adjustments before you would get the OH agreement to ill health retirement so definitely worth considering if you can afford to retire early and use what energy you have to enjoy your life.
You're not alone..I'm flaring too today 😔🤗Forget the shower..pop your PJ's on..make a cuppa n get cosy on the couch/armchair. Your body's telling you to rest..so rest u must or else you'll feel worse.If you Google the Spoon theory you'll find an excellent description of fatigue that you can share with family to help them understand the impact of fatigue.
Treat yourself as gently as you would a poorly child..give yourself some grace..you're worth it.
Hoping tomorrow's a better day for you n me both 🙏💜🌈xx
Yes, I've just read the spoons theory, someone very kindly sent it. It's absolutely spot on x
Is there a difference between AI associated fatigue eg as in all forms of lupus, Sjögren’s, PMR etc vs ME (myalgic encephalitis)/CFS (chronic fatigue syndrome)???:
webmd.com/chronic-fatigue-s...
If one’s fatigue is not diagnosed as ME/CFS does one lose compensation?🥹🧐
I can totally relate. I have been dragging myself to work through what feels like setting cement. And to keep working I have to keep my personal life so small and simple or I wouldn’t be able to work. In the end I think having no life outside of work is impacting me negatively too as what’s the point in anything if all I do is work and very little else. I’ve withdrawn from life really other than to make ‘appearances’ to not affect others if that makes sense.
It does... I hate making plans and when I do, I'm just clock watching. I know it might sound selfish, but I feel cheated. At 62 I have worked hard all my life and not sure what to expect in my retirement. X
I feel ypur pain. I'm HLTA, love my job but it's getting so hard and putting work first is impacting on my family life.Like you OH are involved( strip light s are a huge problem for me in school) but not a lot they can do. I have dropped down to 4 days, now considering 3 days.
If that doesn't work the only other option I can think of is supply, working when I feel good. Of course with that cones the financial worry and the stress of having no routine, travelling and going into different schools.
It's very hard isn't it when you've put so much into your work , for so long with children you care for.
Take care x
Hi Mctd,
I am younger but feeling the same, heavy lifting everyday. I was fine until recently (I am on HCQ) and now again drained. We are invited for two weddings in summer, had to reply for an invitation before Christmas and I am thinking: mate I am not sure where will I be tomorrow, let alone in summer. I am advised to check for the following parameters, by my nutritionist:
Iron, UIBC, TIBC, ferritin (<- forms of iron)
Vitamin A, 25OH vitamin D and 1.25 vitamin D3
B9, selenium, zinc
Magnesium, sodium, calcium, potassium, glucose
What that will tell, I am not sure but it can be indicator for chronic fatigue issues. I will know more once I do tests. Best of luck to you x
I am in Suffolk. Copycat situation like yours. All private-rheumatologist and nutritionist. I did initial blood work private, but then my rheumatolgist kindly asks for blood work via NHS. And I need to regularly control myself (twice per year). Havent seen GP either, only through phone call to tell me the blood results. Not refered to NHS rheuma yet. To nutritionist I went by myself, in hope that might help but I can’t say much, I just started about two months ago and changing diet can take a long time to act. IF it will have any effect is also a big question. Basically, just trying to find a way to help myself.
I was exactly the same, I was a primary teacher, got diagnosed at 26 when I just couldn't carry on, had a huge flare after Ofsted. I changed to teaching assistant and family worker thinking I could manage illness better without all the planning but then had to go to 4 days then another job as disability adviser in a uni for 3 days until I couldn't carry on at 35. Are you in the UK? If so I would recommend you looking at Pip and contribution based ESA as the gp surgery told me about them as I just couldn't continue x
Just using your brain let alone move can floor you. If your body says rest then you have to rest. When I used to try going all day without a rest and sleep for a few hours in the afternoon, my rashes got worse, I got dizzy, headaches, it just wasn't worth it. It's an awful thing to think of but working may not be something you can do now. Maybe if they would consider part time. It is probably the case that you're feeling so exhausted because you are doing far too much for your body and brain to cope with. Sjogrens effects every fibre of your body and your brain, it's telling you it's had enough of your current schedule and its shutting you down before it can't cope and sends you into a massive flare. Fatigue is a warning signal that you need to change your routine. It may be that your fatigue doesn't change from now on or it may improve a little but it won't go away. Try and work out a plan going forward and how much rest you need to be able to live more normally inbetween the rests. Listen to your body and try things out but it sounds like you need time off for a few weeks to work this all out. It's a pig but I do get about 3 hours inbetween rests each day where I can cope with some secular work and housework etc.. Going out for the day is hopeless unless I have my car and can sleep in there in the afternoon whilst everyone else carries on around me. Honestly your family get used to it and you do in the end. It's about keeping as rested and healthy for as long as possible to carry on some kind of semi normal life. I hope you work things out. You can always ask your GP about an occupational health referral as they deal with fatigue management and can give you some advice on this.
I've asked about fatigue at every Rhumatology and Nephrologist appointment I've been to and it's like I'm speaking a foreign language and it get swept under the carpet.
B12 really helped me. I take 1 tablet per day. Just Chew it up and it's a miracle! Good luck!
We’re all different but yes some days are harder than others also depending on everyone’s job. I go to the gym on regular basis and some days where I feel really tired I just tell myself to tak a brake and when I’m home I do things to relax like face mask or a foot spa in order to make myself feel better. It may trick you mind a little you know having a cup of tea and watching Netflix. Just relax or maybe take a day off just for yourself to reset. I hope you feel better soon and maybe also take some supplements? Not sure if you do or not. Best wishes xox
I know, I used to be superfit but now, once I've been to work I can just about manage to drive home. Sometimes I don't think I should have, my brain fog and fatigue is so bad. I'm guessing it's time to re-evaluate as I have no work life balance at the moment.
Whilst I appreciate the “spoons” theory/metaphor/analogy for limited energy/chronic fatigue in lupus and AI disease sufferers , with me living on my own and having to do all the household tasks: cleaning, laundry, vacuum cleaning, washing up, gardening etc etc my strategy is:
#Plan it first, break each task down into separate components and differentiate according to energy sapping characteristics!How many spoons needed?🥹👆
#I use a detailed diary/calendar but a very flexible one. Often tasks get cancelled!
#Positive self-talk helps eg “I can and will do this”, “I’ll start at near sunset for gardening” (Photosensitivity) 😎👒
However with gardening it’s generally a self-reinforcing task and I end up doing 2 hours instead of 1 hour .🤣
So there you go…🤣🥹
But still procrastination occurs…🤣
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