Why do I feel so awful all the time?!


I have lupus and aps, and without moaning I just feel terrible all the time! I feel drained and like I have pain all over my body.

Is it the lupus or something else? Does anyone feel like this too? I could just scream I'm so fed up of feeling like this.

I am on 50mg azathioprine twice a day is anyone on this and what dose? X

19 Replies

  • I'm so sorry for you. It is a horrible thing to feel so physically bad most of the time. You are not alone in your suffering however. I can tell you that I too feel ill most of the time. Instead of getting better I usually feel worse especially if I allow myself to dwell too much on my predicament. You still need to explore why you are feeling so ill. In my case, I have other chronic autoimmune disorders as well as lupus and I was also born with primary immune disease. I spent many, many years searching for answers and found some help along the way, but for me there will never be much real relief. So, it can happen unfortunately, that some people do suffer... But! Don't give in until you have satisfied yourself and loved ones that you are an exception, because there are so many of us that can make improvements in our lives.

  • I know I shouldn't complain or moan as things could be so much worse. I just get so fed up of feeling so drained and in pain, it's frustrating that I just can't get on and do just everyday things!

    I'm seeing my cons in 2wks as recently started on azathioprine so going to discuss things with him.

    I think when I just have one of those really bad days I think I'm never gonna feel any better but I'm sure it will get better just takes time X

  • Sara

    Sorry to hear that you are feeling so bad, you say that you recently started azathioprine and it does take some time to help so don't give up on it just yet.

    I and many others here know just what it's like when you are forever waiting and hoping that things will get better.

    We all find different coping strategies.

    I find I am happiest when I pick my battles, some challenges are just too hard, so I pick an easier one and then really enjoy managing it.

    Just my way of sticking two fingers up to lupus

    Since my enforced retirement, I've taken up a new hobby, needle felting and wet felting, it uses many different techniques, some more strenuous than others, so there is always something I can do.

    I have found a way to manage some gardening in a raised container garden, and I get ridiculously happy about the vegetables I manage to grow.

    On bad days, I tell myself that it's a good day for a rest anyway ☺

    Don't give up, and keep fighting, make sure you tell you doctor how you are really feeling.

    I hope things get better for you soon, there are always people here that you can talk to.

  • Thanku, what u say makes sense I think maybe I have too much time to think, I am currently on maternity leave and find it hard with 2 little ones feel I should always be taking them somewhere so feel guilty when I don't feel up to it. Things like popping to the shops is a major task some days!

    I don't know why I am moaning at the moment think it's just getting me down a bit. It's hard with sleep when u never feel refreshed just would like to get up one morning and think 'I feel great today' instead of ' have I actually been asleep!'

    Anyway moan over! As I say it could be worse so feel awful complaining X

  • It sure sounds like you have fibromyalgia along with the lupus. I found it hard to function when I was in my late 20's and thereafter when my children were small. I am now 72 and I read that if you are over 50 the terminal part of lupus is worse. I thought it would be the opposite. I was just dx'd with lupus in August or September, but I am sure I had it much longer. I feel for you with your small children, sometimes you just can't push yourself any further. And you shouldn't w/fibro, if you push it makes it worse and doctors will tell you to rest and not push until you feel better. And then to be very easy on yourself, very hard when you can look fine. just jan

  • Well a few yrs back before lupus and aps diagnosis they had suggested fibromyalgia but nothing really said about it since but yes I think I probably do.

  • There is a test they can do. There are 18 places on your body that can be tested by pressure on those points. They are called pressure points. It hurt in all 18 pts for me

  • Oh, have been on azathioprine for 11 wks now. When I think oh I think this is working I then have a few bad days. Am on hydroxychloroquine too and Pred amongst several other things for pain, migraines etc etc !

  • Hi Sara, I just want to tell you what my Rheumatologist said to me the first time I saw her, she said: "when you go home look on your computer and learn as much as you can about Lupus" and Fibromyalgia which I did do and I understood a bit more of what was happening to me. Then I joined this Lupus UK group Health Unlocked where if you want to share any of your problems with others, rather than family who don't always get what you are going through, you can talk to the people on here who always understand and are willing to listen to you and this place is good to vent all your problems.

    You are not alone with your pain and you have people on here who will help you. x

  • hi sara i really feel for you , i found out i have lupus with scleraderma overlap, some days i feel like im going mad. its like having constant flu with bad joint pain ,burning stomach and fuzzy head, ive been on methatrexate and 10 mg of steroids for 3 months now and feel just as crap i just try to keep positive and hope the meds will work eventually, you really are not alone and i really hope you have some improvement soon .i find reading helps cut off but must be hard having small children you will get there we all will big hug to you xx

  • I just think what is wrong with me! Why can't I do these things. Cos I look ok! Well knackered mostly ha, but ok!

    I had good response with hydroxychloroquine 4yrs ago before my first baby but this time treatment seems to be taking longer to kick in. I just hate not being able to plan or just go off for a walk just simple things.

    Just got to stay positive like u say, hard when u feel crap everyday tho isn't it X

  • That's the thing Sara, you have a good response and them things get worse again, it's so hard to tell what is helping.

    If you can find time, keeping a diary can help clarify things and help you understand how your activity/stress levels influence your lupus.

    Have you read about the spoons theory, Google it when you have a moment.

  • Yes I've read that, I think most days at the mo I have about 2 or 3 spoons! Ha X

  • I would like to google that.

  • I have fibromyalgia, scarcodosis, SLE w/CNS involvement. All autoimmune diseases, which usually happens with lupus patients. Good luck. I never know where one starts and the other leaves off concerning the fibromyalgia and the lupus. Fibromyalgia causes wide spread pain in your nerves and tissue, lupus causes joint pain. Severe fatigue is part of both fibro and lupus. Double wammie when you have both. God bless you Sara A and give you some good days to make the bad days bearable. just jan PS I think I have had fibromyalgia since childhood, but not diagnosed until about 2008, my memory is bad. Lupus not dx'd until last month although I had the butterfly rash and skin rash for a long time. I used to do weird things like lay on my lawn and pour ice water on my chest, trying to cool down. Not smart as I was sun sensitive, but did not know it. Thought it was hormonal. Got sent to psychs ward many times. Told I was bi-polar, which I knew the symptoms of and knew I was not. Sent to one psych ward that was straight out of hell and like the movies of mental wards. If not for my faith in God, I thought about hanging myself. Prayed and lived though it.

  • I had this for months and months - it is lupus - they put me on Hydroxychloroquine and after about a month I started to feel so much better. Hang on in there and ask for Hydroxychloroquine- I don't know why but we have to fight for everything with this condition. As tho no one believes we have it!

  • Sadly I am already on it and also started azathioprine 11wks ago and steroids. Yet still feel awful. Think there is room to increase my azathioprine tho so really hope that helps otherwise who knows! Saw gp last week for my pain he gave me morphine! Seems a bit drastic for joint pain but I suppose that's all they can do x

  • There is a bit of a gap between pain relief that is useless in SLE and what we tend to think of as the really big guns.

    Sorry you are feeling so rough. Are you on maternity leave having just had your second child? If so this flare is probably a reaction to the hormone fluctuations you are going through/have been through. So hang on in there as it could all take a while to settle down. Can you get some help with the children? Sometimes asking for help feels really hard but it makes everyone feel better including friends/family around you who want to help but are not sure how.

    I recently read that Vitamin D actually improves symptoms I would definitely think about following Cas70's advice.

    Certainly you are not alone....Keep fighting back....even if that means doing it lying down! Take care.

  • You poor thing, mine is nothing compared! Have you tried the St Thomas's Lupus Clinic? They deal with it in every form and on a daily basis. I take daily Vit D and B12 in spray form which was recommended by Doc. Good luck

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