It's been a rough 6 months and even with treatment, my "bedtime" is still around 2-3pm. Out of nowhere I just crash. I finally went on medical leave for a couple of weeks thinking the lower stress would help with the energy, but nothing has improved.
Would love some tips and tricks for making through the afternoon. Have to go back to work soon and am having anxiety because I just physically can't make it through the day.
I'm open to anything, but so many times I find my self at the store not knowing what to buy. so much stuff out there but what really works? I'm currently taking a good vitamin, omegas and calcium. we just stopped MTX b/c my liver tests came back and were really bad. have no medication support - besides pain - right now so could use some good thoughts and recommendations for natural things that will at least keep my eyes open!
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katidid
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Ok it seems like a deep dark pit at first when the fatigue is so bad you cant get a grip on it. The first thing I would suggest is regular everything. Meals (small and manageable) bedtime, go to bed at say eleven even if you know you wont sleep instantly. Try to lay and relax your brain and body. I know this difficult if you feel pain , but take pain meds about twenty mins before bed. Don't eat before bed. Even if your not asleep your body starts to feel the pattern of rest. Set and alarm for the same time, each morning. Even if you are tired, again your brain needs a pattern.
Pace yours throughout the day. Fifteen mins physical, (put the washing on) next fifteen, sit and watch a bit of TV (yes I know get used to recording) you may need the next fifteen of silence.
All of this really helped me. I was frustrated angry, tired and in pain. I wont say its all gone it hasn't, but I manage. Sometimes I don't give in I have a "rest time" I give myself a break. I didn't before.
When you return to work you can ask for graded return. Ask your gp for advice and support.
Definitely get some TX support. Have you tried Plaquenil yet? Also what about your Vit D and B12? That will help a little bit. Has your thyroid been checked? All of these run together and will help a little bit.
just got the tests. B12 is good but I'm still insufficient on the vitamin D. I found a new supplement that hopefully will help but will call the doc for am rx if it doesn't improve. thyroid is good, and actually running closer to hyper than hypo. My IgG levels and aren't great tho, so will need to see if we can get those good guys ramped up.
I also get to 2-3pm and hit a brickwall and need to sleep. I do find if I pace myself sometimes I can get away with just a rest rather than sleep. I have found Hydroxychloroquine has helped me loads.
It happens to me exactly between 2-3 as well! Literally on cue, i just power down. I've been trying what you recommend and just resting vs. sleeping. I actually think it works better. sleeping in the middle of the day makes me feel strange and I'm trying to resist it except on days when they pain and the body aches are just too much. I'll check out the stuff you mentioned. Is that a prescription or supplement?
just realized that Hydroxychloroquine is Plaquenil. Not sure why, but my doc isn't recommending it. might be b/c i have psoriatic arthritis and spondylitis in addition to lupus. treatment gets complicated :/
Ah. Lupus chronic fatigue. For me and I guess many others, the worst symptom of all. I could cope with life and all the other crappy symptoms if I didn't have the fatigue. We need a magic pill. But there isn't one. We all have to find our own ways of coping. Our own strategies. I was at a very low point last April / May and decided I couldn't cope with my part time job as a TA. Even my 16 hours a week, school time hours that suited my 3 children and school holidays off, was just too much for me. I was picking the children up from school and going to bed for 1-3 hours to sleep before I got up to cook an evening meal. My family were not getting the best of me. My job was. So now, I go to bed about 1pm, on school days, I rest/snooze/sleep until my alarm goes off about 3pm to do the school run. Which means that I can cope with their after school activities and am up and can talk to them etc. Rather than going to bed by 8pm I now can stay up with my family until 9pm sometimes 10pm. And I don't spend my weekends in bed recovering from my week. It's much better for us as a family. So that's how I have had to adjust my daily routine to cope with fatigue and being a wife and mum of 3. But we are all different. We all have to find our own way. Of course things vary, depending on anaemia and iron levels, vitamin D, vitamin B12 deficiency, thyroid issues etc and flares can upset the routine we have found. I am well aware that I am lucky to be able to be a stay at home mum. Not everyone is fortunate enough to be able to decide this, financially. But when you do try to go back to work make sure you utilise all the help you can. Explain to your employers. Lupus UK have information leaflets for employers. Speak to your HR department. Don't be afraid to speak about your illness. You are protected legally. Good luck with it all. Wendy
Thanks Wendy! I had no idea they made info for employers. I think giving that to HR and my team will help a lot. Especially since I think that our project stress has a lot to to with me flaring up at work. I'm also going to see if they will let me go back 1/2 time. unfortunately, I work in technology consulting and media, so a 50 hr week is the mn. not a forgiving industry for people who can't work all the tme.
I am sorry to hear you have been feeling poorly and that your sleeping pattern has been altered as a result of this. Have you discussed this with your doctor or rheumatologist?
We published a blog article last year on ways that you can manage fatigue which I hope will be of help to you: lupusuk.org.uk/managing-fat... .
As you will soon be returning to work, it is advised to speak to your HR department in order to have access to an occupational health practitioner/therapist. He/she may carry out an assessment to identify your needs and abilities before providing you with appropriate support. You may want to take a look at our ‘When an Employee has lupus’ guide or perhaps take a copy with you to show to the occupational practitioner/therapist: lupusuk.org.uk/wp-content/u... . If you need a physical copy posted to you, just send me an email at chanpreet@lupusuk.org.uk with your name and address.
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