Just so tired

Morning all, now I know with Lupus chronic fatigue is a big thing and I get that but I’m really struggling. All I do is look forward to going to bed. I’m not like a lot of you amazing people with young children (my stepchildren are 11 & 13 respectively) and I don’t know how you do it. I’m in a full time work and the travel is an hour each way but at 35 surely I should t be as exhausted as I am. Has anyone got any natural remedies I can try? My Dr has just doubled my Hydroxichloroquine and I’m hoping that will help but I’m really starting to feel really low about it all. Xx

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The fatigue in autoimmune disease is rarely helped by the medication unfortunately - it's a bit like having real flu on a 24/7/365 basis I'm afraid.

Pacing is the key. The links in the post may help (PMR is just another a/i disorder)

healthunlocked.com/pmrgcauk......

The ME link in the second one is particulalry good.

Happy reading.

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Hi jennae

I can really sympathise with your fatigue struggles as I do too, feeling it specially at the moment. it can be so demoralising not being able to do what others can do!. We mustn't compare ourselves to them because these illnesses give us so much to contend with on top of normal life!. It is about pacing and resting when needed and if you can you might like to think about less hours at work or cutting down your commute!. Tough decisions I know, citizens advice can help with a benefits check to see if you could offset your lesser salary if you did go part time. They will help you claim for anything too!.

Hopefully the higher dose of Hydroxy will help as its supposed to be good for fatigue. Another suggestion is if your flaring badly a short course of steroids can be good to dampen down the inflammation and that helps you feel less tired. Is that something your GP could do for you?.

Also have you been tested for anaemia and thyroid as both can make you feel very tired!. A lot of days I can just look forward to bed like you and I don't work or have kids and it can be very depressing!

Fingers crossed for Hydroxy taking effect and there's many on here like us who can sympathise with you. X

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Thank you so much xx

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I second the anemia. I was doing quite well and then had a bit of a crash. I upped the Pred for a while and although it helped with other symptoms, it didn't help with the fatigue. Then I got tested and I was anemic again. Since taking supplements I've had a lot more energy. I have also started on the D3 again and magnesium/zinc. Might be worth getting tested for the vitamins and minerals we tend to be deficient in?

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Hi Jennae,

Yes fatigue is a tough one, when I was diagnosed with lupus in 2011 I was working in London and travelling 90 mins each way as well as the hours in the office. I approached my employers as they have to consider requests for flexible working, I was allowed to work 7am until 3pm which meant not travelling in rush hour. As others have said though, pacing yourself is key and rest when you can, i dont know your circumstances but working reduced hours also could help. I am on hydroxychloroquine but only went on it when symptoms had stabilised after a course of steroids.

I also believe a good diet rich in vegetables and fruit is important and look to eat foods with anti inflammatory properties such as pineapple. There is no easy answer but hope my response helps in some way.

John

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Thank you so much, I think it’s just trying to get my head round it all is making it worse. All opinions and ideas so helpful so thank you so much x

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Hey Jennae

Are you still eating gluten in your diet? I gave up gluten and eventually dairy and noticed a big difference in that I had much less fatigue when I removed gluten (completely) from my diet. Just a thought and you may well already be gluten free in which case I think some of the other comments above are really useful.

Wishing you well.

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Hi JennaeClifford,

Almost 90% of people with lupus experience fatigue making it one of the most common symptoms of lupus. We published an article on our blog about managing fatigue which contains helpful tips and information which you can read here: lupusuk.org.uk/managing-fat...

If you are currently feeling overwhelmed and stressed then it may be best to speak with your doctor and see if they will write you a note for a few days leave. Stress can be an important trigger for lupus, so it is important not to push yourself too hard.

If you need information about lupus and employment, including information about your rights and what support services are available, we have two booklets that you can read and download at lupusuk.org.uk/working-with.... If you need physical copies sent to you, please email me at chanpreet@lupusuk.org.uk with your name and address.

There are certain foods that can make a difference to your lupus; you may wish to read our blog article on diet and healthy eating here lupusuk.org.uk/diet-and-hea...

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