Feeling a bit fed up

Hello all. I have been on Hydroxy since June. I have days where I am convinced it is working. I feel alert, happy and able to complete all I need to do. I fit in some exercise too. Days like this I feel very optimistic. But today I awoke with that 'hungover' feeling, painful swollen hands, generalised stiffness, fogginess. I am feeling nauseous and dizzy. The dizzyness is happening more often lately. I am increasingly tired, my house is a tip and the shopping is not done. Will things ever feel better or is this it now? I am 47 on Tuesday :( and had not expected my late forties to be like this.

17 Replies

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  • hi madlottie, do you think you may be over-doing it on your good days? Have you been told about pacing yourself? It does sound as if you are trying to do too much. Hope you feel better soon xxx

  • Hi jayfer. I suspect you are probably right. I have been so active throughout my life that I struggle to take things easy. Will get an early night :) Thanks for replying xx

  • Hiya, Madlottie, I'm with Jayfer on this one and wonder if you are overdoing things, I'm in my mid 40's and when first diagnosed (3yrs ago) I still tried to do everything I needed to do, i.e. work, clean, cook etc... and like you had days when I could and days when i couldn't. I try not to offer advice often but on this occasion really feel you should take it easy as you wouldn't want things to get worse. Try adn pace yourself.

  • Thanks slowmo. Yes I do need to pace myself. I suppose I am mourning the loss of pre-lupus madlottie. And it is still early days so I shouldn't expect miracles from the treatment. X

  • I am now 50 and diagnosed 3 years ago.I agree with the guys above. We dont have to aaccept lupus, just learn to live alongside it. Life is very different for sure, but its not all bad by any means and there are even positives to be found. Google "the Spoon Theory" xx

  • Pacing yourself is probably the single most important thing (other than giving up smoking) you can do. We are all guilty of overdoing it on good days, but the resultant crash soon teaches you that it's just not worth it. And look, when it comes down to it: who needs a clean house when they can have a happier and less painful you? One of the most important things I learned was not to beat myself up over what are in fact trivialities: I can ignore dust, I can't ignore joints so swollen I can't move. So I'm really just adding my voice to the rest of you: take it easy, value yourself above housework, and enjoy the good days. Jo

  • Hi, I completely empathise with you.....I was diagnosed in February, am 39 years old and previously very active - used run 5 miles each morning, run a busy household for my 3kids and hubby and helped my hubby with his business.....learning to pace myself has been very difficult but vital to my feeling better.....with regards to the hydorchloroquine, it took 6 months before I noticed a real difference so hang in there!!

    All the best xxx

  • Hi,

    Much the same as everyone else pacing yourself is the best thing....It's been a long road, but after a couple of years or so, I've actually realised that we've nothing to feel guilty about if the washing up isn't done immediately (no dishwasher), there's a layer of dust and we're behind with the washing.....and we feel absolutely done in and crazy with pain....I'm 55, an ex athlete, hockey player, rider and walker...those were the days!

    Now I'm thankful for any pain free moment and enjoy the less active things in life...It's really hard, but I've adopted the 'live for the moment' attitude...selfish ? May be, but it's helping me cope.... along with folks on this site and the knowledge that there are others who understand......

    Take care and chin up xxx

  • I could only take hydroxy for a couple of weeks as I had an allergic reaction to it, but before stopping it, I noticed that it seemed to make me dizzy and nauseous. Obviously I can't comment on what it is like long term but I do think it's also important to keep a record of things that seem to have occurred since starting meds to be able to feedback to the medical people. We're just not all wired up the same huh. Take care and hope you have a good day soon. x

  • Hi madlottie,

    If you wish to talk to somebody obviously, please feel free to use this site as much as you need. We also have contacts around the country that have lupus and can be an understanding ear for you. There are also lupus support groups that meet up.

    If you require anymore information please don't hesitate to get in touch. You can get hold of me on here, by email at hayley@lupusuk.org.uk or you can call our office on 01708 731251.

    Take care

    Hayley

    LUPUS UK

  • Hi everyone!

    I know sometimes is difficult to live with Lupus, in my case I am 26 and I have Lupus since 9 years this autumn.

    The only thing is to be strong everyday and keep being positive. I use to take 23 pils a day and today I need to take 8 pils since 5 years. It will be an advantage if you have a social life, doing some activities such as sport or anything you like. This will help you to move on with your life and be more attached with life.

    I do not say that it is easy, but it is possible to have a normal life if you keep being positive.

    I still have pains sometimes or feel really lazy because I feel extremely tired some days due to Lupus.

    In my case, it was really severe because I was losing my kidneys but finally here I am!! :D

    Everything is in the head ;)

    If you have any questions I will be happy to reply you.

    Have a nice day!

  • Thankyou everyone for replying. Your comments are really helpful. I sense you could all see that I was feeling down and despondent. As I said in one of my responses I think I am struggling with this pacing idea and accepting that pre-lupus madlottie is not here at the moment. I have always been so active and 'on the ball'. Infact the year before I got diagnosed I had completed a half-ironman distance triathlon. I hope that by accepting I need to pace and re-setting my goals I should begin to come to terms with this. I cycled in to work today but will rest tomorrow :)

  • Hi Madlottie, I love this site as I can often look back a year and think oh I felt exactly like your post etc. I found the hydroxy took 6 months to kick in but I also needed more and got put on methotrexate which has helped a lot too. I also have difficulty with the whole 'pacing' side of things and I think it's also letting go of too much forward planning as we never quite know how we will be on a given day. If I have something coming up now I try to pencil in nothing a few days before and then the same afterwards to recover. So recently I went to a concert and needed a few days afterwards doing nothing but the vibe of being there, singing, feeling free from thinking about lupus was so worth a few days of needing to rest. I guess it's all about balance really. It is a difficult concept to live like we do.......I think though the hydroxy helped it wasn't until I went on the methotrexate that I have got some normality back. I hope things improve for you and if they don't do discuss other meds with yoru rheumy.....they can give you things to help. xx

  • Thanks mstr. Do you mind saying what your symptoms were. I find it difficult to gauge when it is considered appropriate to say I need more help.

  • Hi, I had really bad joint pain, hands, elbows, ankles, neck and pain in stomach (inflamation), lots of uti's, costochonditis, difficulty getting out of chairs, up stairs, walking very stiff and slowly, muscle weakness and strength in legs and arms, sacrolites, chest infections repeatedly and really bad fatigue. The methotrexate has been increased slowly up to 25 mg weekly and this helps a lot (bit sickly on day of taking it and next morning. I knew to ask for more meds as wasn't coping with the pain, difficulty passing urine and constant flare up one afer another and visits to A&E in pain. Hope this helps. Since then I have had flare ups but these are and not of the same intensity (usually), stlll ache and muscles are sore but fatigue much better and condition manageable though still have to pace as we all do. Still have days when I need heat pads on joints/shoulders/legs but stiffness and weakness in legs and arms improved on the methotrexate. I was fearful to go on it and it is a heavy drug but if it gets things under control then I choose to live in the moment. Hope you get sorted too xx

  • Which type of hydroxy a u taking. I was so ill with quinoric. I felt better when I started taking the other one- plaquenil .

  • To all my fellow rheumy patients - I have come to the conclusion that I'm at my best health when I'm active Hence I'm still in full time employment. I might take pain killers once during my shift at work. i feel my aches and pains when I'm on my days off work.

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