Fatique

[Tulipano]

This week my fatigue is really bad, I feel very weak and drained. How do you cope with fatigue?

[lisa___s]

Rest whenever you can. I’m sure that seems like a simple thing but that literally is the best thing you can do.

Just assess things in your mind ‘ do I really need to do this today or can it wait till I feel better and have more energy?’

That’s what I do. I hope you feel better xx

[Ianrussell69]

I normally fall asleep straight after my tea I’m afraid rest is all you can do there’s no quick fix sorry

[Tulipano]

I thought once i was on medication my fatigue was going to be less. 😥

[honeybug]

Hi 👋 So sorry about your fatigue.

When I had it at the beginning I would lay down listen to a DVD with nature sounds until my body and mind relaxed

I have always had insomnia so sleep was never an option

I made sure my room was dark or placed a cloth over my eyes to ensure darkness.

This sure helped me

Wishing you the best

😊🌸. 🤗💕xxx

[ava97]

I don't know wht I do??I also have this question I have many works to do as I m student..after tht whn I m going to job section dnt knw wht is in my fate..😂😂

[panda2]

Hi Tulipano,

I personally think fatigue is one of the THE worst symptoms. One is never sure if we are going to ever come out of the fog of it. It's no wonder that it is pressing on you. I think we all have to find our own ways to manage it as it probably is different for everyone, but my Rheumatologist gave me an excellent pamphlet at my last visit that had some really helpful points for me. Explaining that it is both physical and mental and that it is different in quality and intensity from regular tiredness and doesn't always improve after rest.

It was important for me to read of my exact experience -- that it may occur at any time of the day for any duration, with no clear cause or warning. And it is always made worse by lack of understanding from others who think of fatigue in a more generalised way.

There was an explanation of the causes in people with autoimmune diseases where chemicals called cytokines are released. These are found in inflamed tissues, similar to chemicals released in viral illnesses and can cause this extreme fatigue. Of course there are other reasons like anaemia, diabetes and thyroid and some drugs will cause it too. But knowing about the cytokines made a lot of sense to me. And also understanding that it could go as mysteriously as it arrived brought a certain comfort.

Not sure if any of that helps Tulipano...

With much hope for some relief for you soon.

Panda x

[HeKe in reply to panda2]

Panda, thank you so much for posting this. I really like to understand as much as I can. This is the first I've heard of cytokines and now I understand why I get so tired so suddenly.

H x

[panda2 in reply to HeKe]

Hi Heke,

It really does help, doesn't it.. Just that little bit of info. I've managed (and accepted) my fatigue so much better ever since.

Px

[Melba1 in reply to panda2]

Hi Panda, that’s very helpful info. Do you know who wrote/ where we could get this leaflet please? Think it would be helpful for most of us as we all hate the fatigue 🙁

X

[panda2 in reply to Melba1]

Hi Melba1,

It's through Arthritis Research UK. My Rheumatologist said it applies to all autoimmune diseases and it's too bad that it's so directed towards Arthritis as others don't think to look here for answers for connective tissue disease. I just looked it up online through the pamphlet and found the link. There are many pages and ideas for how to self-help.

arthritisresearchuk.org/art...

I'll make a separate post so that more will see it. Thanks for suggesting this Melba1, great idea!

Panda

x

[Melba1 in reply to panda2]

Thanks Panda! That’s why this site is so great as we can all help each other 🙂

I’m under a great hospital, rheumy department and rheumy but the focus is all (understandably) about saving organs/ lives and sometimes they don’t realise that the worst thing for many of us is the fatigue etc so they never seem to have info or much advice on it.

I went to a neurological rehab physio and she went over all this type of thing, the fatigue, the pacing, exercises etc. It wasn’t anything I didn’t really know but it was so nice to have an hour with someone discussing it and trying to work out strategies. I think sometimes the fatigue and lack of solutions and help with it can make us feel quite powerless.

Hopefully there will be a lupus fatigue cure one day!

X

[Tulipano]

Thank you xxx

[happytulip]

1. I have a "flare freezer drawer." Basically when I'm feeling well I do batch cooking so that when I am in a flare or too tired to cook I just defrost something and chuck it in the oven. It means I stick to my anti inflammatory diet when I am at my most fatigued so still get good nutrition.

2. I listen to my body and dont push myself beyond limits.

3. Gentle activity around the house. Literally pottering at a maximum. Housework can do one!

4. Treat myself, like if I have enough energy for a bath I use extra nice smellies instead of the ususal ones.

5. This is psychologically important: when/if I get out of bed I change out of my nightwear and put on comfy house clothes and change back into nightwear if I crawl back into bed. Research has shown that when patients are in hospital they can be more physically active and generally feel better if they get into day clothes and don't sit around in nightdresses or PJs. In the old days it was called "pyjama induced paralysis."

I find it changes my mental attitude a lot.

6. Be kind to yourself and don't stress. Accept the limitations however frustrating it is.

7. Netflix!!

[Loopydroopy in reply to happytulip]

Really like the way you think happytulip

[HeKe in reply to happytulip]

Brill! A woman after my own heart. I can't advocate batch cooking enough. I've always done it. I do it for my busy children who are coping with young families and full time work and I've always done it for friends who are ill. This is particularly paying dividends now as people are returning favours now 😁