I've just VERY recently been diagnosed with lupus and Class III lupus nephritis. The diagnosis came as something of a shock since I was actually feeling pretty well and had only been investigated further because of some concerning blood test results.
I don't think I've been experiencing this lupus fatigue which others seem to suffer from at all... until last night! I had to stay at work till late to catch up on things, had an awful tube journey home, it was hot... and by the time I got back, I was so wiped out that I literally felt dizzy and every bit of my body just felt heavy and exhausted. I can't explain!
Anyway, after falling into bed and sleeping till about 10 this morning I do feel a bit better, but I have this odd feeling as though I ran a half-marathon yesterday without training properly and then forgot to do a warm-down (and yes, I have been foolish enough to do this in the past, so I am familiar with the sensation!).
I'm trying to push through it but... what a weird feeling this is! Is this "fatigue" or am I just being a bit lazy?! And if it is fatigue, what should I be doing? Trying to stay active (which I don't feel like, but also feels as though it would be more beneficial) or collapsing in a heap and doing nothing (which is extremely tempting, but seems a bit defeatist!).
Any advice for someone who's new to this and basically a bit clueless would be hugely appreciated!
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Autoimmune disorders almost always feature fatigue - but there are different sorts and not everybody has all of them:
Reading the links in this post on another forum may help you understand it a bit better - the names of the disorders aren't the same. But the fatigue aspect is.
After what you went through last week I think your mind and body must now rest. The stress of hospitalization, a serious diagnosis and now new meds to adjust to and knowing you have a non curable serious disease is all exhausting. You should allow yourself time to absorb, rest and heal physically and mentally now.
I will say that after my own acute flares I found taking a week or two to heal was all that was mentally healthy for me. After a week of rest my mental wellness declined greatly and my fatigue and odd symptoms actually worsened not lessened after my strokes last fall. Once I began physical therapy, speech pathology treatment and CBT therapy to address medically caused PTSD I started to feel better. Then when I started back at work, I interviewed for a new position a few weeks after my stroke still with apparent deficits and started within a month, I improved even more. I also make sure to at least walk a half an hour every day. I started with ten minutes limping around my block and now usually walk five miles a day. Keeping routinely active, starting with what you can handle not pushing it, is a proven why to help with illness caused fatigue and depression.
So as you are still in the acute stage of kidney involvement I think resting is very important and you should not strive to push on through it but after a few weeks of healing you might want to start a routine of building back up to what you use to achieve. Start small and build back rather than push through is what really helped me.
Good luck and I am so happy to hear you are out of the hospital.
Yes......that's the tricky and freaky thing with kidneys - you can feel really well right at the point where they're in trouble. I was reminded of this when my nephew developed kidney problems - he was working in a heavy labouring job and had no idea until he presented to his GP when he felt like he was going to flake out. The GP did a basic inspection and he was rushed to hospital. Total bewilderment was his reaction.
I have class 3 & 5 Lupus Nephritis. My first flare was in 1982 when I was 14, but when they flared in 2015 my Doctors told me to do as little physical activity as possible - as in don't move unless you have to. I was leaking a lot of protein and it was thought I'd loose them. - I was 46 when this happened (under the care of a dud Rheumatologist who'd let them simmer away untreated for years) so the things were a tad fragile at this point.
Rest is not a dirty word when you're sick with anything, but with kidneys its important not to put too much pressure on renal capillaries that are trying to heal.
My advice is to not push through it at all...…. as in get as much rest as you can until you can ask you're nephrologist or GP about how much activity is appropriate for you're situation right now......they should have shared this with you already ?
Also hoping you're on appropriate BP meds.
In my hypocritical experience its always important to follow the cues of you're body before you're mind and its expectations whether you know what's going on with this bloody illness or not.
Through years of renal battering - my kidneys have healed well and I'm back to exercising - although my nephrologist told me not to overdo it. I tried to climb a small mountain about six months ago and...…..when I got up the top I believe I learnt what she meant. It didn't do me any harm - but......I learnt what overdoing it was for me. A very slow and gentle trip down - so slow and gentle the sun went down. Thank god for mobile phone torches.
Just my very amateur opinion, but once the class three stuff in healed - you should be able to get back to normal. Just take it easy until things have healed a bit.
Roarah, I suspect we are similar in that I hate inactivity! Whenever I've been ill (colds and viruses and so on) in the past, I always wanted to get back into things as quickly as possible and even though I sometimes felt horrible for a day or two, I always felt that it actually speeded up my recovery. But it might have been a mistake to go into work yesterday... it was so hot and the underground journey was vile and I ended up staying for ages longer than I meant. And the consultant and my GP did actually say "no work", so it's entirely my own fault.
Freckle1000, I am taking only a very tiny dose of BP meds because my BP never actually got so high... I have very very low BP naturally, so I guess that "my" high was still within normal ranges.
One thing that's irritating me (and sorry if this is a bit TMI) is that I'm needing to pee a lot at night... so I'll be waking up, like, 5 or 6 times. The nephrologist says this isn't unusual and I'm not getting overly worn out by it (since I have quite a good ability to go straight back to sleep!) but it's kind of annoying.
And yeah, I guess I need a little time to adjust to the whole situation, but I'm not feeling too bad about things at the moment... although maybe it hasn't really sunk in yet!
It is important during acute illness especially with organ involvement to follow your doctor's orders! Please take the suggested time off or at least work from home where you can take multiple breaks and do not need to travel out. Xo
When it’s lupus fatigue for me as opposed to life fatigue I feel like my muscles melt into the bed or sofa. My large muscle groups gets shaky.
‘Push through it’ is not good for you regardless of why. Listen to your body. Fatigue makes you as impaired as alcohol. It’s time to be proactive with your strength and rest.
You’re not lazy!!!!! You just got doused with really high doses of steroids which will make you feel like you’ve run 20 marathons. Did they put you on a taper or pulse and stop? Did they start you on any other medications?
Stay hydrated! Eat well. Sleep well even if it means a glass of wine. It will take about a week or so to regain your strength after what you’ve been through. I can’t believe you’re working! Tough cookie...
Taper, but I am going back to the hospital tomorrow to discuss the treatment - the consultant said that depending on the biopsy results they would consider Cytoxan, so I'll see what's suggested.
I hadn't actually really thought about the fact that I might be tired because of the steroids! I assumed it was lupus-tiredness, but maybe it's steroid-tiredness! Anyway, I've been trying to take it easy, and I'm trying to decide if I'll be OK to go into work tomorrow after a good two days of rest...
Cytoxan is cyclophosphamide. This is literally chemo light. Inhibits bad cells from growing by messing with DNA. Please discuss fertility options before agreeing to this if you want to have children.
Your other option is CellCept or mycophenolate. The jury is still out but it seems to work well in lupus nephritis based on preliminary data. This is a less toxic, often better tolerated option esp for child bearing women.
They may "bridge" you on steroids meaning start a taper while the other medications ramp up in effect eg hydroxychloroquine, cellcept, imuran. This will be done over about a months time or so. I posted on this before but steroids are a double edged sword. They make you feel wonderful until they don't anymore - tired, short of breath, constipated, bloated, moon facies, weird fat pads. Try hard to stick to the taper if they give you one. They are hard to stop for many once taken for greater than a month.
You can always message me if you have any questions. I am always happy to help. Again, I am not a rheumatologist but the above should help guide you through a scary time. Hang in there! Many hugs
Thanks so much for all the info! I've been trying to read up on the various drug options, so that I'm not going into my appointment totally clueless. I'm feeling a lot better today! I basically slept most of yesterday and was afraid that I wouldn't be able to sleep at night - but I slept right through the night for the first time in ages! So I'm actually feeling good this morning
I'm one who would push through but with lupus you have to learn to manage your condition to avoid getting in an exhausted mess!! Please listen to your body and find what works for you. Steroids can affect us physically, mentally and sleep patterns esp in high doses so its a journey to working all this out as well as absorbing the impact on life. Wishing you well soon
I have had lupus for 20plus years. I has musculosk symptoms,sun sensi and would really be fairly functional, good energy if I avoided 100percent the sun and slept well. If "normal "people are at 100 percent I was between 50-80 depending on the season. I was unfortunate to develop LNephritis Class 5 earlier this year. Well I can tell you I have been EXHAUSTED with it--even though my kidney fxn is still thankfully normal I am tired from I guess the inflammation and protein loss. My energy level is between 10-20percent of normal---so my opinion or should I say in case the kidney inflammation is causing exhaustion---what meds are you going to be put on?
Yes it’s your lupus but you’re on treat meant now and knowledge is power you will improve and live with it as part of your life rather than being ruled by it in time. Go with the flow rest when can work when you can the only way is up xx
Yep. Absolutely ! There's not a point in the day or night where I don't have water - ( mixed with about one sixth proportion of fruit juice - hate just plain water ) If I don't have a glass of fluids next to me I almost panic. ( I also have a Raynaulds like dry mouth that helps me keep drinking ) When I asked wether I had Raynaulds they told me there's a different SLE antibody that behaves the same way. So lucky for me the urge to constantly drink is always there. Pretty sure it's helped my Kidneys all the way through.
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