PMRpro

I don't have lupus - I have another autoimmune disorder with FATIGUE! But I'd just like to say pacing and resting has to be the biggest help - and to recommend a blog you may not have come across: Despite Lupus by Sara Gorman. Sara has lupus, is married, has 2 small girls and runs a business as well as advocating for lupus (she's written a book and lectures). Sara's mantra is pacing - and she has loads of others tips for lupus people too. She helped me understand the importance of planned resting and how to use it best and I'm sure she has something useful for everybody, whether they have lupus or not.

Paul_HowardPartner in reply to PMRpro

Hi PMRpro,

Thank you so much for the suggestion. I think that pacing is very important when trying to manage fatigue, so any tips on how to do this well are sure to be helpful.

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PMRpro in reply to Paul_Howard

I've just written a small essay on it on my "own" forum - and the quick way to explain it is do things in bites and rest in between! Iron a few shirts, have a rest, iron a few more, have a rest, rinse and repeat. You can often do something else while sitting resting so it doesn't waste time really. And by doing that you can manage to achieve far more in a day than just bashing on until you drop and the next day is a washout as well. Or even inducing a flare.

Sara has a planned rest - at a given time in the early early afternoon and for a set time. Then she is able to get up and carry on with the day, into the evening as well. If she misses it for any reason, travelling or just thinking "I'm feeling good today, I won't bother", she find it catches up later, sometimes a few days or even more afterwards and if it is really bad, she even develops a real flare, needing bed rest and more medication. You have to know your limitations and stick to them - however much people try to persuade you to ignore them.

And to be perfectly honest - I can't explain it much better than in this allegory about living with chronic illness:

butyoudontlooksick.com/arti...

Though if you ever want an article about it - just ask!

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Asarahjohnson

I have a connective tissue disorder which they believe is likely to be lupus.

Diet has made the most difference to my lupus.

I have a brother who is coeliac and read a lot about gluten being the cause of much autoimmune disease. Or at last exacerbating autoimmune disease.

So I gave up gluten and started to get better after 6 weeks. As well as symptomatic improvement, my bloods also improve.

I was still having joint pain so gave up dairy. My joint pain disappeared.

Having been inadvertently contaminated since on a number of occasions, my symptoms return. So I have learnt to be a fascist about where and what I eat.

Even the hair loss is worsened by gluten contamination. Although I don't have coeliac my ferritin levels fall when I get contaminated exacerbating hair loss.

The longer I stick to the diet, the better I feel. Starting to feel so good, I am planning on an running again soon.

I've also given up refined sugars too and this 43 year old has gone back to the body shape and size of her 18 year old self.

Feel the best I have felt in years.

And have returned to work as a registrar in Obs and gyn tho part time - so a busy active job. From not being able to get out of bed or off the sofa without dizziness due to fatigue.

Paul_HowardPartner in reply to Asarahjohnson

Hi Asarahjohnson,

I'm really pleased that you were able to identify particular foods that were contributing to your symptoms and by removing them from your diet you are now feeling much better. That is great news.

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johare

Pacing still the best. I started with fifteen minutes doing one thing then change. The change had to be from physical to mental ie ironing (whilst sitting) to TV ( recorded) or reading. On bad days fifteen minutes rest. Rest meaning nothing. This was so difficult as I misunderstood and thought rest meant watching TV. Oh no. Too much stimulation. Moved on now from fifteen minutes but sometimes go back during a flare.

I tried to fight it as I'm independent and was angry, but had to accept I needed to rest. Now because of this good advice I can predict most mornings what lies ahead. Holidays are alternate days or half days of doing things now so as not to spoil the week.

I still get pain but the fatigue is managed.

Paul_HowardPartner in reply to johare

Hi johare. Thank you so much for sharing details of how you use pacing to help manage your fatigue. That is great.

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Ruth_lderry

I do have lupus. Fatigue is awful. I know that days I feel good I do far to much then suffer for it or even on that day its like my body hits a brick wall and I have to get to bed 4 sleep. Days that I have made plans even such as to go to camera club one night a week that day I will have to rest all day but that doesn't stop me being extremely tired I still suffer. So no matter what I do am always tired. Only thing is now I am suffering with my face dropping on the right side this will most always happen when am tired so even if I would like to batter on my face says different it will go to sleep now on the right side b4 am even ready 4 it ( I am going through tests with a neuro doc at the moment still waiting on answers one year on).

So 4 me fatigue is my killer it stops me doing one hell of a lot in life.

Most people really misunderstand this so many people have said to me 'u not sleep at night' or even 'u do nothing to be tired' , if only they had a day in the life of me suffering from lupus(SLE), fibromyalgia, Facial problems, Muscle problems, IBS, weight problems and so many other little things that all add up 2 hurt me or make me suffer in some way.

This lupus has a lot to answer 4, but what can I do bar embrace it and carry on not like I can just cut it out suppose its part of me now. Trying to make a onwards and upwards tired wee life for myself/

Take care all.

Ruth x

Paul_HowardPartner in reply to Ruth_lderry

Hi Ruth. Thank you for sharing your experiences. Pacing yourself on good days can be very difficult if you have lots that you want to get done. It is very important to not overdo it on your good days though because it can cause you to crash.

Have you considered trying out some pacing techniques? Action for M.E. have produced a great booklet about pacing that you can download at actionforme.org.uk/uploads/... It is not specifically for people with lupus, but most of the priniciples will still apply.

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Hidden

I don't have antibodies for Lupus so my diagnosis is still RA, but minus the RA itself and lots of the systemic stuff, including fatigue, Raynauds and Sicca. I don't sleep well and never have so this is a large contributor, but also have akways been useless at pacing until very recently when I've had to learn the hard way what happens if I don't.

For me the odd catnap during the day really helps - I think they call it power napping but I still don't have much power after these 🙄. I do get my brain power and positivism from doing this though. If I get too tired I become low and very anxious and pained.

I'm also much better if I stay away from wheat or if possible ftom gluten although I don't have full blown Coeliacs. I feel by looking after my gut with a very wholesome and balanced diet my symptoms recede a bit and I sleep better. Over Christmas and New Year this went to pot and it has taken two weeks, lots of lactulose and paracetamol and extra long cat naps to get back on track with my life.

If I know that I can't build in a short nap during the day then I'll anticipate this by taking a sleeping pill the previous night to ensure a good night's sleep - although I have a one a week only rule with these. I also find taking regular antihistamine helps me sleep better so I don't need longer than 10-15 minutes if I've slept well at night.

This is the best I can do in less than ideal circumstances. No one, apart from my hubby and youngest son, know about my power naps because I've got very good at sneaking them in - getting hubby (whom I work with) to drive us to an appointment so I can nap on route or son to answer door or phone while I'm snoozing. It makes me feel far older than my years having to pace in this way but I feel even more ancient if I don't! i also find daily exercise is terribly important but because I have balance issues presently I stick to just walking the dogs because fresh air is just as high up on my list.

Paul_HowardPartner in reply to Hidden

Thank you for sharing your experiences and tips twitchytoes. I think that your techniques for sneaking in 'power naps' in the middle of the day are very clever and I'm pleased that they help a bit.

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Hidden in reply to Paul_Howard

Thanks Paul - hope they help others a little too perhaps. Looking back I've always suffered from fatigue since I was a child but always had a lot I have wanted to achieve. So covert napping is a skill I've acquired over many years!

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Hidden

It's a good idea to check there is no other reason for your fatigue. I got really exhausted before Christmas and was blaming it on taking on too many commitments but went to the doctor anyway. I had a lot of blood tests done and it turns out my thyroid was becoming very under active and I was low in vitamin D. I have only been on the increased dose of thyroxine for a few weeks but I already notice a difference. I also experienced extreme fatigue when my iron was low. My fatigue was initially dismissed as one of those things but blood tests at rheumatology picked it up.

Paul_HowardPartner in reply to Hidden

Hi Shazzer1976,

That's a really helpful tip so thank you for sharing. I'm glad to hear that you were able to identify the reason you were getting so exhausted and that increasing your thyroxine has helped.

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