Firstly I have no diagnosis of lupus, but have decided to post on this forum because I don't know what it is and I would really like regards to managing fatigue and as well as fatigue I also have some other symptoms that are also symptoms of lupus (eg. joint and muscle pain, rashes). I would not like to speculate whether it is actually lupus or not until I've seen a rheumatologist (which I have been referred to). For information my anxiety is going really high at the moment because it's telling me that I shouldn't post in this forum because I don't know if I even have lupus but another part is telling me that I shouldn't be worried about it as you're probably all lovely people that wouldn't mind giving advice anyways (it's fair to say that my anxiety doesn't help my fatigue in any way)
Anyways, on to the point of the post. So one of my main problems lately has been with fatigue and this has affected my studying (I'm currently at uni), I really need any advice anyone can give me on how to help manage the fatigue and use the energy that I do have effectively. These issues have already caused me to have to postpone 4 exams and therefore will mean this semester I will only complete 2 out of 4 modules. I have till Monday to revise for the one exam I am doing this January (of which has been a massive struggle due to fatigue but I think I'll just about get there) then I have just under 2 weeks till the start of second semester, of which unsurprising I am going to be using to rest and try to recoup a bit.
The problem is I really can't afford to move any more assessments. I can only afford to not complete 1 more module without needing to retake them next year and even if I don't move just 1 module and can sit them in the summer all I'm doing is putting the strain on me during the summer as I already have the 4 exams there anyways. To make it even worse in my timetable I've got these horrible 3 and 4 hour blocks of lectures that are would be difficult enough before. What's even more annoying is that I have times where I have barely anything so I wish they would have spread them out more. Of course I will try to use these days without much to rest but that's not going to make the difficult blocks of lectures easy.
I have added in a picture to show you what I mean by my timetable, this week is very typical of my weeks before ester, fortunately it gets better after ester but I'm so worried that I'm going to be completely exhausted by the time ester comes
Any advice about how to manage it would be greatly appreciated as not only is it affecting my studying it's making me feel unable to leave my room too much as just walking down to the shop on campus makes me feel completely drained and I'm starting to feel even more isolated due to it .
Many thanks for any responses,
Jade .
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KiwiMonkey
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Hi, I have SLE & I don't think anyone on this site will mind you posting everyone is quite friendly, even if it's not lupus & it's something else some one will point you to the right site you need.
Has your GP mentioned that fatigue & some of your symptoms could be because you are feeling so stressed out with the pressure of exams?
You could be suffering from Chronic Fatigue Syndrome, which could be why just trying to walk to shops or even function after a few hours of studying could be making you so exhausted.
There should be on campus a student health place, sorry can't remember name of it, but they may help you to work out your time table to may be go to lectures on a morning & then on an afternoon have a couple of hours sleep to recharge & then study for your exams for a few hours. Whilst you are waiting for your diagnoses you need to pace yourself by resting often, even if it's an hour or 2 hours a day.
You haven't mentioned any other symptoms so I can't say if it could be SLE or not, but either ways you still need to pace yourself & have set times for a rest to be included into your time table. Good luck & let us know how you get on.
I have been through many exams series before and the fatigue has never been as bad as now. Even at A level when I had 10 exams in one exam period it didn't get this bad, I was tired of course but I think it would have been hard to find a student that wasn't.
I have been referred to a rheumatologist because I also have issues with joint pain, muscle pain and weakness and a few other bits, and normal blood tests didn't show up any reasons.
Of course I would never expect anyone to try and tell me whether or not SLE is likely. I know it is a possibilty because I have seen the symptoms and they do seem to fit, but of course they also fit with other conditions, so I'll have to wait for my referal to come through.
I am seeking help for my anxiety through my uni's counselling service, but from what I can tell my fatigue levels increased and that is what has caused my current increase in anxiety. I get help from the uni because of the anxiety and also because I have aspergers, so I am well supported at uni, and are aware of my current issues with fatigue in particular, I have also mentioned stuff about joint pain etc but as this is not causing to much problems generally I haven't obviously focused on that.
If you'd like a free information pack about lupus then you can send off for, or download one here: lupusuk.org.uk/contact-us.
We also have a factsheet called 'Fatigue and your Lifestyle' available here: lupusuk.org.uk/publications which might be of interest to you.
It's important that you go to see your GP about this. Try to keep track of the symptoms that you experience and bring them up at your next appointment. Hopefully they should be able to diagnose your problem and help you to manage your fatigue. Do you have a doctor's appointment coming up any time soon?
I've seen my GP who ran some blood tests which showed nothing that would cause fatigue, or any other the other symptoms that I have, and she has referred me to a rheumatologist, so I'm now waiting for the referral to some through. She also wrote me a letter to apply for extenuating circumstances for 2 of my 3 exams this January as at my uni you need to provide evidence.
Firstly, we'll done for getting this looked at, that's a major step. Make sure you write down ALL your symptoms and take them to your doctor. Try not to get swayed by the doctor telling you that all the tests are normal and being patted on the head that all is fine. If that happens, stand your ground and ask for an explanation to your symptoms until you get one. Many on this forum spent years getting a diagnosis, so be prepare to fight for yourself.
Now, about your fatigue and the anxiety. It is very likely that they are both caused by whatever illness you're experiencing. The fatigue is overwhelming and I know what it means to have back to back meetings where you need all your wits about. Of course you want to rest but sadly without proper treatment that addresses the cause of the fatigue, the rest is likely to be unrefreshing.
But our bodies are amazing and if you ask something of them, they'll rally and deliver, even if that means that it will fall apart later on when the adrenaline goes.
For me coffee was a godsend. I was getting up at 5.30am, getting to work by 6.30am, first coffee (strong) at 7.30am. Worked non-stop till noon taking care to drink loads of water and teas (herbal). At noon something to eat at my desk, working at the same time and then at 2pm another coffee that would keep me going till about 4pm. At that point I might have been able to take a 20-30 min break to clear my head and then push for my last stretch, working till 7pm, sometimes later.
And so on. Weekends were full of work still, then house chores, unable to relax or rest.
But I did it until of course the body has had enough and I got pericarditis. That stopped me fully. But it also helped getting me diagnosed and treatment started.
My point here is: you can push hard for 2-3 months while you get through diagnostic tests. You can get coffees on tap, keep hydrated and try some breathing exercises for your anxiety. But it will take its toll on the body, the hope is that at some point soon you'll get to treatment and things can improve (though even that will take time).
I would speak to your people at the uni and explain what you're going through (if you haven't already). Ask for the ability to access materials from home and study from there rather than drag yourself out of the bed to get attend. Sleep when you can and as long as you can. You may not feel refreshed but the body needs it badly. Cut out sugar and gluten entirely - seriously, it will help your body.
Push your appointments with the doctors to be as soon as possible and get on their backs to get to a diagnosis ASAP. The sooner you get to that, the quicker you get to treatment.
There are many in this forum who are at uni and suffer similarly. I'm hoping they'll respond and help. But the point is that it is doable, you need to just get the uni people aware and supporting you.
Fortunately I have a very good support network at uni because of the anxiety and aspergers so have a few people that I can turn to. I have told people of my current issues and of course it became obvious that I was having difficulty when I applied for extenuating circumstances for 4 of my exams (and have to give evidence of this so they knew I wasn't lying). I may speak to my personal tutor about the logistics of missing lectures and getting someone else to record those for me, especially when I have a big block of lectures, and go through the recording at another time when I have more time. I record all my lectures anyways and struggle to keep up with note taking at the best of times.
Sadly I don't like coffee, I don't even like the smell of it. I'm waiting for a referral to rheumatology to come through, so I don't know how long that will take and obviously I have lectures, exams, coursework, lab work to try and get through until then. As I said if I defer too much they'll make me repeat the whole year, which I don't really want to have to do, but I'll have to try anything to manage it, as lets face it if it turns out to be anything such as lupus I'll have to learn how to anyways.
I don't know exactly where she's referred me to and she only put it through earlier this month, so I wouldn't have expected it to come through quite yet anyways, hopefully won't take too long, once I find out what it is I can try and move on and will know better what I can do to help it.
Sorry to hear its such a hard slog for you at the moment.
Don't worry about being here illness is illness whatever the cause and anxiety isn't going to help.
I suffer fatigue from multiple illnesses and it can have worse effect than the pain as it doesn't let you do stuff to distract from symptoms.
I noted you haven't said whether you are getting good sleep as with aspergers and anxiety sleep patterns cn get disturbed and cause a vicious circle of fatigue. Disturbed sleep can trigger or present symptoms of Fibromyalgia which can be primary or secondary to an autoimmune illness.Fibro itself can cause extreme fatigue,aches, anxiety ,depression and sensitivity to enviromental pollution causing rashes.
As others have replied note down all your symptoms before appointment with rheumy and if your sleep isn't good ask your gp for help and advice to achieve healthy sleep pattern and routine.
I'm taking medication to try and help me get to sleep now, my main problem is I take a long time to get to sleep, so I always make sure I go to bed an extra hour or so before I really need to be asleep. If the rheumatologist can't find anything that's causing the issue I may go back to the GP to see if she can organise tests to see how well I'm actually sleeping when I do get to sleep. I didn't have any problem as a kid, but unsurprising has increased with my anxiety although my anxiety was very low when I started to notice my fatigue levels increasing and the increase in fatigue is increasing my anxiety, which is probably becoming a viscous cycle.
Hi Jade - firstly well done for coming here and seeking advice from others with fatigue. I don't have a diagnosis of lupus - but I do have some overlap autoimmunity and everyone here has made me feel welcome so I stay. It's a great community and no one person's lupus is exactly the same.
My oldest son has Aspergers and has recently completed a masters. He has had some very rocky times with his physical health while at university and the two universities he attended were fairly supportive.
What I feel about him though is that his OCD ways over food have affected his health adversely. He refuses to eat certain important types of food such as fresh veg and fruit. This has not helped his severe eczema and he's had infected patches with blood poisoning when stress of exams was very high.
Do you eat a balanced and nutritious diet I wonder because there is an argument that the gut is at the heart of all autoimmunity and also affects conditions such as Aspergers. I'm not saying I subscribe to this fictional enzyme/ leaky gut theory. I'm not a scientist or qualified to understand the facts. But I do believe that looking after yourself as well as possible with a very wholesome diet and daily fresh air and gentle exercise such as tai chi or Pilates might work best for garnering energy - if you don't already follow this kind of lifestyle that is. Looking after myself as well as possible has certainly helped with my RA and hypothyroidism I'm quite certain. As Purpletop says the body and mind have a remarkable capacity to rise to the occasion - but crash and burn afterwards usually for those with chronic conditions.
If you are looking after yourself optimally with good sleep, fresh air and exercise and a wholesome diet you may not crash and burn nearly so much and nutritious food is fuel for the brain as well as supporting the immune system and helping with energy levels.
For now all the best with all the medical tests and with keeping on top of your uni work, exams etc.
I'm trying to be a bit better with my diet, it wasn't terrible but I can't say that there wasn't room for change. My energy levels severely drop after just walking to the library on campus and at the moment with revision I can't afford to be having less time for revision just caused by walking somewhere. They do a fair few number of classes at my sports park but it takes about 20/25mins to walk there and I won't get on the bus by myself because of my anxieties.
I can see it's a catch 22 for you.
This makes me think of a friend with RA who introduced me to her 22 year old daughter a few years ago. This young woman had just started working for a bank after completing her degree - when she experienced a sudden onset of some type of arthritis with awful muscle pain and severe fatigue. She was admitted to hospital but they could find nothing wrong with her so her mum took her home to live.
Slowly but surely, with a diagnosis of Fibromyalgia, she has retrained in something she loves. Increasingly her confidence is returning and she takes medication for her Fibro and has researched diet and has had great success controlling her pain and managing her fatigue through a total change in direction, diet and lifestyle. Not saying this would necessarily apply to you of course but I still think you might find that tweaking your diet and practicing very gentle exercise at home might help.
I feel sure that introducing AdCal D3 helped me lift myself out of severe depression when I found out that my vitamin D and calcium levels were both far too low. Taking control of the aspects of your life you can control is very important I feel.
Research chronic fatigue syndrome. .and section on pacing. Also listen to your body. ... i have learnt to pace my activities which means not over doing things on good days but knowing my limited s on how far to push myself. ..on bad days don't be too hard on yourself when you need to rest .....if you don't listen to your body at this stage it wll result in more bad than good days ..for example if i had a busy day scheduled for Tuesday. Then plan from Sunday stop when you feel tired. Monday rest and conserve energy. Tuesday busy day .Wednesday total rest day Thursday lighter activities. Friday normal .
I have no plans to stop trying with my studies, I generally enjoy the course (despite the intensity of it) and know I am more than capable of doing it, as the tests I have managed to do I have got very high results. I just want to know what it is now as I feel it would help me move on, and I like to know what's going on anyways. Hopefully it's something simple, but without a diagnosis it's difficult to understand 😞.
I have an appointment with the rheumatologist on the 21st March, so hopefully I'll have a better idea after I've seen them. There were earlier appointments but they were all a bit awkward with my uni schedule.
I did manage to get through the one exam I'd planned to do, even though it was difficult and I wondered how sometimes. I now have a bit of time off, so trying to make the most of it.
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but another part is telling me that I shouldn't be worried about it as you're probably all lovely people that wouldn't mind giving advice anyways (it's fair to say that my anxiety doesn't help my fatigue in any way)
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