These last few days I've felt tired and weak, even after just waking up. Walking up the stairs is tiring, I took a short walk on Friday, and on the way back I had to make stops to sit down and rest. My legs have been aching but it's not like I've done anything strenuous. I'm coming down on steroids which are known to increase tiredness, it's been a bit of a stressful week so I think that could be catching up to me too. I wake up around 7-9am, (sleeping at 11pm) and by 9pm I feel exhausted.
Has anything similar happened to anyone in the past or recently? Would you recommend just resting or trying to do gentle exercises to build muscle?
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poppies_are_red
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You say you are tapering steroids - what dose have you got to? I have almost identical symptoms having got to 5mg pred - below about 7mg your adrenal function has to wake up and start to produce a top-up of cortisol to be able to function optimally. That doesn't happen overnight, a slow taper is essential and so is patience. It will have been compounded by being under stress. I was very breathless walking into the village at 5mg. I went back to 6mg and feel far better - I had got a bit worried about the breathlessness but am not worried now.
The trouble is, you have to get through this stage to get off pred - which is why I say slow and patiently. At this stage 1/2mg at a time is advisable and not more than every 3 or 4 weeks. It can be a slow process - and sometimes even that is too fast.
I'm near the end of 20mg this week. I started at 60mg at the beginning of July because of florid arthritis, then was put on the decrease, but went back up to 30mg mid August for a solid 3 weeks to reduce inflammation and pain. I had a look at cortisol, stress and all that on the internet. The symptoms of cortisol withdrawal: lightheadedness, severe fatigue, weakness (Mayo Clinic, 2022) all hit home. I've also been feeling quite anxious lately, my heart beating really fast, so that could also be an effect of coming down from steroids.
Sometimes your iron drops so worth asking for a ferritin check on your blood test. Apart from that, fatigue is part of lupus and it sounds like that’s what is starting here x
Hi poppies. I’ve never reduced steroids even a little bit without feeling fairly awful. Some of us are more sensitive. I don’t know your age and any other meds so if it were me I’d make tea and rest.
Your post resonates with me as this year my steroid dose has been up and down causing the same symptoms. It wasn't until I read your post through again that I realised that, as I have increased dose again in last few weeks due to rash activity, I now have more energy, strength and can breathe easier!! As PMRpro says, no doubt your symptoms are the result of you taking less steroids and a stage that you have to get through.
When I was feeling totally exhausted a few months ago, as I tried to reduce dosage, all I could do was rest and sleep. Couch to Kitchen was my limit.
As always with Lupus it can be one step forward then two steps back and you know your body better than anyone else. Do what you can, be active if you can but rest when you must. Hope you feel better soon.
I recommend taking a break during the day even if it is a few minutes where you put your feet up or have a nap so you feel at ease for the rest of the day (morning and evening) it might even help you feel better for doing what you want to during the day.
I am unable to comment much on tapering steroids, however, with your fatigue and breathlessness, there is a great blog written by a Physiotherapist named Louise on our website. She shares some great tips for managing these symptoms, see the link below, I hope you find it helpful -
Hi Poppies, yes having Lupus does cause fatigue. A lot of times even having many hours of sleep, still leaves you tired. As you decrease the steroid dose that also can have an effect.
It will be a good thing to make an appointment to let your doctor know how you are feeling, so that a blood test can be done, You can always ask your GP to check your Full blood count, to check haemoglobin levels, white cell count and red cell, also ask to check folate and B12, Vitamin D
In the meantime listen to your body. If you need to rest more then please do, if you are out take your time and again if you need to sit or rest please do so
For me fatigue is the biggest problem because I’m
Always tired. I just pace myself so I don’t completely burnout.
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