Do you ever feel normal again?

I have been unwell for 3 years but finally after taking steroids and plaquenil found some releif from symptoms and actually have a bit of a life. I still get tired days

where I feel wiped out and bad joint pain but haven't been bed bound like before. Are you ever meant to get back to feeling 100% with medicine? Or will it always be good and bad spells?

26 Replies

  • hiya sorry to say there will always be a few good days more bad then good i have had lupus for 17 years now there is always somethink new every day i am often bed bound with one thing or enougher it is tough and a bad disease sorry to say never will be 100% again it wrecked my marrage hope you do feel alot better soon all the best

  • Hiya, i would love to know this too. I am diagnosed 2 years and for this past year and half have been doing ok as in maybe 4 days a week feeling good. But this past 6 months ive been feeling awful with more bad days than good. This has really scared me because i really thought my meds had this disease under control now im feeling so crap i worry meds aren't working. Ive an urgent rheummy app next week, i haven't been seen by rheummy in 9 months and i think this has something to do with my health decline. Im usually seen every 6 months. I take plaquenil which im happy with i dont want to start more heavy duty drugs as im afraid of side effects. I wonder is it the 'norm' to feel so ill most pf the time? I was in bed all day today, seriously is this what the rest of my life is gonna be like? I really hope not, i hate lupus :(

  • Sorry to hear your not doing too good! Really is a horrible disease! Changed my whole world and had to dig very deep to get through so many days. Like all of us.

    What dose of plaquinal are you on? I often wonder how well we are meant to feel on these medicines! I have only been on plaquenil 3 months so I have to give it another 3 to see its full effects, prednisilone is down to 5mg, my knees are agony and I feel so tired but I'm not bed bound like I was before I started them so I have to be grateful for that! Just everyday is suffering with something isn't it? :'(

    Hope your appointment goes well and that they come up with something that helps, maybe upping your dose or something. All the medicines have side effects which are scary!

  • Hi there,

    I'm on the same medication as you and alter my prednisalone up and down depending on how bad I feel. I find that diet helps and have experimented over the years. I find a vegan diet helps whilst taking care I get the right amount of calcium and protein. A bit of research told me all I needed to know. Cutting out wheat helped and I also experimented with the GAPS diet which I found difficult to manage but it helped with my symptoms. GAPS and vegan ism are two totally opposing diets but something worked for both and they didn't do me any harm.

    I'm pretty determined to get off the steroids but deep down I know I probably won't be able to drop any lower than 3mg. That's low in comparison to other Lupus suffers and at least I can still hold down a job and interact with my kids.

    I believe the Plaquinil protects out heart so I'll keep on with that. I have good weeks and bad weeks but maintaining a positive attitude I suppose is all we can hope for. :))

    Good luck


  • Hi, im on 200mg plaquenil i was on 400mg but rheummy reduced that about a year ago, so maybe this has something to do with it. Initially they wanted to start me on cellcept but i wanted to give plaquenil a chance to work and to be honest it did for a long time so maybe this is an ongoing flare :( u say that you take steroids i cant understand why i dont? Ive had steroid infusions in the past so maybe they will give me some this time! Like you say everyday its something i actually feel good today, aching joints but no breathlessness/lung pain that i get really bad so thats a huge plus :) its great to chat here with like minded people i drive my poor family crackers wiv complaints - well i need to moan dont i, otherwise i would cry :) take care x.

  • We have to talk about it or we would crack up! My poor family must be sick of me, haha.

    Might be worth upping the plaquenil, steroids do help but its best not to be on them atall, really want to get off them. They bring there own side effects and problems.

    We have to be thankful for those good days and when we having a bad one we have to remember a good one is round the corner again :)

    Keep us posted about your next appointment and how it goes. Hugs xx

  • Thank you for that info. So interesting. I have given up wheat and found that it has helped no end with my tummy problems. :)

    I am also so determined to get off of the steroids but am struggling on 5mg at the moment. Joints are terrible!

  • I have also given up wheat, it upsets my tummy. I am also taking 400mg of plaquenil and 5mgs of prednisolone, which I want to get off.

    I have had Lupus for thirteen years and I have forgotten what normal is. After Christmas, I felt great for a long time but the hot weather has been absolutely awful.

  • This is my first summer that has really effected me, used to love the sun and sun bathing :( hope when it cools down we will feel a little better, mind you the cold kills my joints too, can't win!

  • Hi Joanne,

    Normal??? What is one of them? I am not sure I ever experienced that before I had my diagnosis! I was first diagnosed nearly twenty years ago but it was only the last couple of years that I have actually taken anything. I must admit that having worked in the medical profession and knowing how badly lupus used to affect people I think that I am lucky to be alive and living in the twenty first century and living a full and active life. Ok I know I am not quite as active as maybe I might have otherwise been but I am a lot more active than many people who don't have lupus. I protect myself from ALL U.V. rays not just the sun, low energy lighting and florescent lighting make my symptoms really bad so I keep away from them or wrap myself up - it has been trough a lot of trial and error that I have learnt to live this way. I live my life to the fullest I can and smile most of the time as I am a lucky woman to get up and breathe formyself in the mornings. I don't know if you have ever heard of the spoon theory, (But you don't look sick) it is very good at describing the way people who have been sick for a long time have got used to living with it. You can find it on Google.

    This is the way life becomes and what I suppose normal is for us lupies

    Good luck

    Madmagz x

  • Hi madmagz. So good to hear other people's experiences! All so new to me and the doctors never have enough time to spend with you and explain anything! Don't know how good I'm meant to feel on these medicines but I know I'm not bed bound like before I started on them so that must be a bonus and like you thankful to be alive as before diagnosis I actually felt and thought I was going to die and no one would find out what's wrong with me, 2 year journey from doctor to doctor. Onwards and upwards :) positive mental attitude :)

  • Although I have days that every joint aches I find I have accepted that's the way it's going to be and don't dwell on it . You can lead a normal life . I almost adopt a stubborn determination I will not be about being sick . The good summer has been tough and I agree the irony is the winter also brings its problems . Like a diabetic for example life is normal you just have to modify lifestyle and trust meds to help . Stay positive honest it's not all negative a good attitude and approach makes a huge difference .

  • That is so true Tramilla. Thank you x

  • Have just joined this forum and its really good to hear from some positive thinkers! I agree very strongly that a good attitude and positive outlook are great aids in managing this disease. I've had lupus for 14 years and now take a fairly stable bunch of meds including steroids, cellcept, plaquenil, statins, bp tabs and warfarin. Only problem at the mo is pain relief. I'm on tramadol and co-codamol but they don't always work....anyone taking a different combination? X

  • Hi, I seem to be pretty much like yourself,and so far my disease is well maintained. I was diagnosed in 2007,in South Africa, with RA and MCTD and with SLE in 2011 here in the UK-when I also so thought I was on my way out-couldn't believe a person could feel so sick- I had had a change in my meds recommended when I arrived in the UK-should have never agreed to that because that is what brought the SLE out with a vengeance. From now on no-one will be messing with my meds !!I feel really fortunate in that, although I never feel 100% ever, I seem not to be affected as badly as some. I don't know what is around the corner,but as you say,onwards and upwards,keeping that positive outlook. Keep on keeping on!! xxxxx

  • Definitely have to stay strong and positive. It is hard when you are having a flare as this is one of my symptoms. I get very anxious, depressed and confused, know now that its par for the course with a flare.

    I had infliximab as my consultant thought I had Behçet's disease to start with which bought on my symptoms with evengance, was so ill and bed bound for months. Is this what you had Taweet?

  • I am always amazed at how grounded and forward thinking everyone is on here. I can find an answer to all my questions and i get to understand all my symtoms. I am not being treated at the moment as my liver is under attack and am being monitored to find out why so am on fortnightly blood test.o and am awaiying a scan. The one thing that keeps the pain and stiffness to a minimum is Celicoxib 200mng which i have been on for years so thought it may this medicine messing my liver up so stopped them, i lasted 5 days and i was so bad with pain and joint stiffness that had to re-start them. I was amazed at the difference this medication makes to my symptoms so it may be worth a try.

  • Hi Janan, is that medicine a pain killer?

    Really hope they get to the bottom of your liver issues ASAP.

    It's fab on here isn't it? So much great info.

  • Hi Joannebond360. They are non steroidal anti-inflammatory drugs. They do not upset your stomach either. I find them amazing give them a try if you can. And yes this is an amazing place to come whrn you have a question or a symptom as someone always puts your mond at rest.

  • Brilliant thank you, will find out about those :)

    Jo x

  • Hi I have been ill for just over 2 years, started on plaquinil which has done very little for me, steroids which haven't and naproxen, tramadol and cocodomol, now along side paquinlil etc ive not long started taking Azathioprine, which is yet to work also. For me more bad than good still fighting through it with hope.

  • I have been ill for over 20 years. Yes you will get your life back, and yes you will feel normal.

    But you will never run the new york marathon, swim the channel or stay up night after night dancing.

    But C'est La Vie. We play the cards we are dealt.

  • I found it helped to define normal into what normal was for me. In other words one of those days when I wasn't crippled entirely but also not a day when I felt pretty good. I found a better acceptance of my illness and it's effects once Iset my own definition.

  • Hi Firebird. I was diagnosed with SLE some 13 years ago and have suffered with my various symptoms, exhaustion, headpain, brain fog and arthritic pain being top of my list for a large part of my life. I am now 68 and have concluded that the only way I can cope with the uncertainty of this illness is to take one day at a time. Today is an example, I was going to church with some friends but have to say 'I hope to come' and thankfully my friends know me and weren't surprised when I had to ring them this morning and say 'sorry, not up to it'. It is dreadfully frustrating but I and my family and friends have been great in their understanding. 'ONE DAY AT A TIME' is my mantra. Hope you are having a GOOD DAY today. Gabs. x.

  • I'm hoping and praying that one day i will get even half way to feeling normal again

  • Thanks everyone! Certainly feeling the most normal I have done in years so have to stay positive :)

    One day at a time is definitely the best way, hate making plans encase I have to break them, hate letting people down :(

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