Fatigue

[Sunflower-1]

Hi everyone

What's the best way to deal with fatigue? I try to pace myself but still feel exhausted quite often.

Thanks

[Treetop33]

I'd love to hear some thoughts on this too. I'm done in by 8pm, or sometimes all day.

[PMRpro]

There are Topics of the Month on fatigue which may help you assess your problem - you do say "try to pace", maybe you need to be firmer about it!

healthunlocked.com/lupusuk/...

healthunlocked.com/lupusuk/...

healthunlocked.com/lupusuk/...

I remember recommending a blog called Despite Lupus - Sara Gorman has a business and two daughters as well as doing a lot of advocacy for lupus. She plans a rest/nap for the early afternoon - and takes it even if she thinks she feels fine. She knows from experience that if she DOESN'T take it she will suffer next day - if she misses a few days she can even trigger a flare.

It certainly does help to rest BEFORE you hit the wall of fatigue - an hour at 1pm or so may be the difference between crashing in the early evening and being functional later.

[Sunflower-1 in reply to PMRpro]

Thank you so much. This information is really helpful to me.

[Tonk]

Hi,

I agree with PMRpro, pacing oneself does help and indeed, may well be a necessity however, we are all different. Often the fatigue will suddenly hit without warning and will follow no discernible pattern at all.

Some days I am full of beans and other days, I am completely exhausted. You can look for patterns in relation to time and activities which really bring on the fatigue however, you may find that there is no pattern. The condition always keeps us guessing, when we feel we have found something that works, Lupus throws something new or different at us.

The Lupus Encyclopaedia has a good checklist on dealing with fatigue and the suggestions, in my view, are sensible for managing your life whether you have Lupus or not.

Good luck with your quest.

[Sunflower-1]

Thanks for your advice. I'm the same some days full of energy, other days exhausted by early afternoon or wake up feeling like i've barely slept. I think I will start monitoring myself a bit more carefully.

[Hidden in reply to Sunflower-1]

I guess that at least there's variety for some. For me the fatigue is now constant and totally debilitating and no amount of pacing helps me cope with it although I keep on trying😉😏

This is about Sjögren's related fatigue rather than Lupus - but nevertheless this article explains the various types of autoimmune fatigue rather well I think: info.sjogrens.org/conquerin...

[PMRpro]

Should have looked for these links before:

healthunlocked.com/pmrgcauk......

healthunlocked.com/pmrgcauk...

Sorry they are from my home forum - I know the second one is on here somewhere but I've just spent 10 mins in an unsuccessful search!!!!!

[Hidden in reply to PMRpro]

Here's another bit of research I spotted earlier on a FB CTD closed community. It really made me think about applying for PIP for the first time - always assumed severe fatigue wouldn't be taken seriously by the benefits people but now I'm seeing my knackered hubby applying for minimum wage jobs aged 55 in order to try and boost our low income I'm really wondering. It's great being self employed on some levels but when it comes do it - a life half lived makes it increasingly impossible!

SCIENTIFIC BACK-UP to SHOW OCCUPATIONAL IMPAIRMENT in SJOGRENS SYNDROME re: dryness, fatigue and pain - for DISABILITY CLAIMS:

SELF-CARE

People with pSS may experience difficulty with eating due to severe dry mouth, leading to diminished taste, reduced appetite and difficulty in chewing and swallowing food (Palmer and Singh 2008).

Sleep disturbance is also common among this client group, including difficulties with falling asleep and more requent and prolonged night wakening (Gudbjörnsson et al 1993), which in turn can contribute to daytime physical and mental fatigue (Ng and Bowman 2010).

Sutcliffe et al (1998) have shown that a proportion of people with pSS are restricted in their social activities, such as visiting friends. People with the condition often report that they do not have enough energy to go out socially because of fatigue.

The physical capacity of fatigued pSS patients is reduced, which leads in turn to decreased functional mobility (Strömbeck et al 2003). This can be limited further by muscle and joint pain. As a result, many people with this condition may experience difficulties in their ability to walk, manoeuvre in bed, manage stairs or transfer effectively. Difficulties with other aspects functional and of personal care, including washing, dressing and toileting, have also been reported (Sutcliffe et al 1998).

Cognitive difficulties or mental fatigue (Ng and Bowman 2010) experienced by those with pSS can impact on their ability to manage and organise tasks at home and in the community, such as budgeting, planning and driving. For people with pSS, the ability to drive is further affected by dry eyes (Goto et al 2002), pain and physical fatigue.

PRODUCTIVITY

People with pSS are less likely to remain in work after diagnosis, or may move to a less demanding schedule or job (Bowman et al 2010). Levels of work disability are significantly correlated with levels of fatigue (Westhoff et al 2012).

A dry mouth can be especially problematic in jobs that rely heavily on oral communication, such as teaching, call centre work or sales. Ocular dryness may particularly affect people whose jobs rely on visual clarity or prolonged use of visual display equipment.

Symptoms including fatigue may also mean that participation in voluntary roles becomes more difficult. People with pSS have reduced capacity in carrying out household work, such as food shopping, cooking, housework, cleaning and caring for children (Bowman et al 2010), which may be due to the fatigue, pain, discomfort and impaired cognition experienced by this client group.

Participation in education could be more difficult for people with pSS due to physical and mental fatigue, pain, discomfort, difficulties with visual clarity and cognition. Ocular dryness can result in difficulties with reading or using computer screens for periods of time and oral dryness may mean that giving verbal presentations can be problematic.

Source:

''Occupational Therapy: A Potentially Valuable Intervention for People with Primary Sjögren's Syndrome''

bjo.sagepub.com/content/75/...

[PMRpro in reply to Hidden]

Severe fatigue is the primary problem in both ME and fibromyalgia - and if they are sufficiently disabled those patients get some form of benefit. My granddaughter gets PIP for asthma - despite having really good days.

I never applied for anything - but there are a lot of those things I struggle with even now. If I can't cook a meal in 15 minutes - tough! And housework?? If I did it as most people do - I wouldn't do anything else, I'd be in bed. Once I've changed the bedding I only really want to crawl into said bed...

[Hidden in reply to PMRpro]

My hubby always maintains that I've had chronic fatigue ever since he first met me as a fellow undergraduate. But, although friends did accept this label for themselves, I never even considered it for myself! Now, of course, I can track clear cut autoimmunity right back to infancy and this probably includes hypothyroidism and alopecia aureate - but definitely Sjögren's.

The problem is that I have an old friend with ME - who had it sufficiently badly that she never got as far as a career that her brains and qualifications promised. She was finally diagnosed with PsA last year, but until then was always having her DLA claims rejected - which was horribly dispiriting and landed her in a food bank in London only two years ago. So I suppose I worry that any claim I make on the grounds of chronic fatigue will fall on deaf ears too. But it seems a bit of a lottery for all rheumatic diseases and the younger a person is the harder it is because a) they haven't been able to rely on good incomes that many older people have, and therefore haven't built up pensions or got CVs etc.

But I'm fortunate in that my fatigue invariably shows up as high inflammation in my blood so it's a verifiable part of an inflammatory disease. Not that this will necessarily help as I generally look well and fight the fatigue with all I have - but we will see. Xx

[Sunflower-1 in reply to Hidden]

Thanks so much for taking the time to help me. Much appreciated! 😊

[Sunflower-1 in reply to PMRpro]

Thanks for your help and the links. They will be useful to me.

[Nikkilama]

youtu.be/RYrONgQkkhQ(Not working as expected?)

If you look at this link it may be helpful to you. It helps you understand the fatigue and importantly explain it to others.

I have found it very hard to keep mentally upbeat with such extreme tiredness it's so hard when you cancel days out or even in my case wonderful holidays in Portugal because I could not possible have traveled. I really empathise withbyou. You are by no means alone I promise you. Take good care. 🦋

[Nikkilama]

I think it's very important to remember to value yourself very highly. Others will shrug off your fatigue as a small matter. Don't fall into the trap of pleasing them and trying to continue as normal. It's easy to be afraid of being type cast as a hypochondriac What you have is very real. You have every right to take the best possible care of yourself. It's so important that you put yourself first and PACE yourself without fail. It's the only way to bank any kind of energy. And remember, some days you genuinely will only have one spoon of energy in that bank and others you may have ten. And even brushing your teeth can use a whole spoon up. If you would like to take on this concept it may help you. I hope it does. Feel free to keep in touch if it helps 🦋

[Sunflower-1]

Aww thanks for your words of support - that's so nice of you! The spoon theory is amazing. I've never seen that before but it makes so much sense and made me think how much energy I actually use and explains why I feel the way I do. I would be happy to keep in touch and thanks once again. Really do appreciate it! 😄

[Nikkilama in reply to Sunflower-1]

I'm so happy to have helped a little. So far I've just been asking everyone else for help and advise on this forum.

The spoon theory is fantastic for quickly telling friends and family where you are each day without having to list all your symptoms. They seem to get it. I also use it to check in on myself. For instance today started with 15 spoons but by 12 , I only had a quarter spoon and knew I had do go to bed for sure. Been here all rest of the day. 🦋

[Sunflower-1]

You've helped me a lot to understand fatigue a lot better. Its certainly a method I will use from now on.

[AimeeA]

Rest, rest, rest! Try to schedule rest breaks throughout the day, especially if you are under stress.

Be sure to hydrate and drink lots of water as dehydration can make you tired. push at least a couple quarts/liters of water spaced throughout the day.

And a good multi vitamin labelled as a stress vitamin designed to boost energy.

Get your thyroid levels and vitamin D levels checked as low levels are common in lupus and can contribute to fatigue and are easily fixed with supplementation.

I felt so much less tired when I started taking a good stress multivitamin, vitamin D and thyroid medication and sufficient water. You can try all that except the thyroid meds on your own until you can talk to your doctor to get tested.

[Sunflower-1 in reply to AimeeA]

Hi Aimed

Thank you for your helpful reply. I will definitely try to get more rest and drink more water.

What is a stress vitamin? I take a vitamin b tablet daily which helps a bit.

Thanks

[AimeeA in reply to Sunflower-1]

I'm in the U.S. and there are multivitamins labelled stress, but if you don't have those they are basically a B-complex vitamins combined with vitamin C that help the body recover from stress and repair itself. Make sure to get the B-complex not just individual B vitamins to get the right balance, then you can add vitamin c.

A good strong multivitamin would also work. The ones formulated for seniors/over 50 usually are stronger and have what you'd need for fatigue too.

2000 mg of vitamin D a day usually helps as many lupus patients can be deficient in that. Get that level checked at the doctor.

[Sunflower-1 in reply to AimeeA]

Thank you Aimee.

[Paul_Howard Partner LUPUS UK]

Hi Sunflower-1 ,

We have a blog article with tips for managing fatigue which you may find helpful. You can access it at lupusuk.org.uk/managing-fat...

[Sunflower-1 in reply to Paul_Howard]

Thanks Paul. That's very helpful.