Has anyone got constant "baseline" lupus problems? People often talk about flares and remission but I seem to have a constant level of pain?

I seem to have a constant level of aches, pains and fatigue which gets worse at certain times but never have what I would call a "remission" as such? I've been like this ever since diagnosis 14 years ago!

Does anyone else have a similar story?

P.S. Happy Christmas to all my fellow "Lupies"! Xxx

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19 Replies

  • You don't say what medication you're on or whether you've tried all the combinations so far. Have you discussed it with your Rheumatologist? Your treatment may need tweaking to get rid of those to the greatest extent possible.

  • Yes very similar! Do have a few good days but never completely good. Always a niggle or fatigue or something.


  • Hi, I commented on your methotrexate post a while ago & just wondered how you were getting on with them? My consultant was supposed to be starting me on them but after numerous scans & x rays decided the most of my pain was due to nerve pain & chronic pain syndrome which apparently most lupies have. After getting myself geared up to take it , & at the moment would now take anything to feel better I'm quite disappointed & frustrated, aarrgghh darn this damn disease & consultants! I hope you're well & wishing you a wonderful sick free christmas! X

  • Hey Sezzie. Have upped my dose now and managed to lower steroids a bit. Still have bad days and had a flare but not as severe as before. Oh no, That must be really frustrating for you! Have they said they would try it at a later date if need be? Thank u so much, and u, merry Christmas xx

  • Hi joannebond, Great news that you've managed to lower your steroids but sad that you're still suffering. I think we just need to get used to living with pain & fatigue & realise that no amount of meds are going to fix us! I'm seeing my rheumy in march & she said we'd look at meds again then. Shes starting me on a new drug for nerve pain & wants to see how I respond to that first, unfortunately it won't mix with 1 of my other meds so shes sending a report to my gp to see if shes happy for me to stop it, which is yet another waiting game! I hope you get your happy mix soon & have a lovely christmas! X

  • I think your right! Even when I feel ok I'm always waiting for the next pain or bad day :( it's a tough old game isn't it? Really hope you are able to take the new medicine and it helps you. :) it's all trial with these meds until something works. And you. Merry Christmas.

  • So true! X

  • Hi Sezzie,

    I ended up on Cellcept (Mycophenolate Mofetil) combined with steroids and Hydroxychloroquine but to be honest, I'm not convinced that they make much difference in my case?

    I've been on varying doses of steroids for 14 years and in August suffered a compression fracture of my spine which the orthopedic surgeon said was probably due to long term steroid use. Wish we were told these potential risks before we shove handfuls of drugs into our bodies!

    Anyway, I fully intend to enjoy Christmas and hope you too can make the most of the good times. Xxx

  • Omg that sounds awful & unfortunately we have faith in our dr's & take whatever they give us not thinking about the long term effects! Steroids are what I call my love hate drugs, hate having to take them but love the relief they bring! I've only been on them for a year & when I reduce to lower than 20mg I become quite ill. I've gained 2 & a half stone on them & they've caused dental bone loss but I just can't stop them, so frustrating! I think we need to get used to our life changes & rest on the bad days & live it large on the good! X

  • Even when I have my so called good days, I still always have pain and fatigue. I have more pain and tiredness on bad days. Since I've started having problems I haven't had any time of feeling like my old self. I call it my new normal and am trying to get used to it. :(

  • I can relate to this I'm tierd constantly achey most days and on bad days in quite abit of pain mostly neck and shoulders and lower back and I sleep terribly most nights its very hard trying to adapt to life but what choice do we have more pills I take worse I feel with nausea upset bowels etc this lupus really is a tough one to live with

  • Hi there rockhopper, my experiences are similar to yours. I was diagnosed 3 years ago and have since given up work aged 45 due to symptoms and my inability to function like I used to. I don't feel I have any period of remission, some days where I'm better than others, and symptoms are not 'too bad' - but I never feel totally free of all symptoms.

    What annoys me the most is how the professionals refer to this as mild lupus (and I mean no offence to those with organ involvement as I know how this is severe in comparison) but I wish another term of reference could be used as it does not feel 'mild' when I'm in pain, have constant rashes, light sensitivity, fatigue etc... and have had to give up work and struggle to live a 'normal' life.

    Wishing you a happy christmas and hope your health is good over the festive period.

  • Hi,

    Many thanks. It's kind of comforting to see that my experience is not unusual! I too had to leave work but realise that no employer could put up with my random pattern of "good and bad" days. I'm lucky to have good friends who understand me when I cancel events etc at short notice but I definitely sympathise with your frustration of being labelled as having "mild" lupus...there's no such thing in my eyes!

    Hope you have a happy Christmas too. Take care. Xxx

  • Hi Rockhopper, I'm very sorry to hear that & sad for you. I was diagnosed a year ago & like you still waiting for this so called "remission" Theirs not a day gone by where I haven't been fighting awful fatigue & constant pain. I've had a few flares which are just awful & I'm now learning that you can't try to fight them as they just last longer. I don't really know what to say apart from praying for "that good day" which I hope we will both have soon. Merry christmas to you too & thank you so much for your post a I was beginning to think I was the only lupus sufferer who was always sick! X

  • Hi Sezzie,

    Thanks for your reply and hope we all get some "better days" over Christmas at least.... mind you maybe I can use it as an excuse to get away from the mother-in-law ! Happy Christmas to you. Xxx

  • Hi Rockhopper, ooh I never thought about that, see having lupus has it's perks after all! ;) x

  • Hi Rockhopper. I have lupus and fibromyalgia. I never get good days. They are usually bad to awful. Constantly tired, no energy, hurt everywhere, bad arms, legs, shoulders, back and ankles, I've had one decent nights sleep in years. So I understand how you feel. The worst thing about all this is that after 4 years of being ill people stop asking how you are. Then I think myself lucky because my friend of same age is battling cancer and that's even worse. She doesn't deserve that either and she's being so brave about it. Hope you get some relief soon and have a good Xmas. Pace, plan and just do what you can and no more. Good luck x

  • Hi, I think that is the hardest part of this condition that because we live with it and try to deal with it loved ones think we are managing. It gets harder as we try to find out what our new limitations are and what we can do without flaring. I am really thankful for 'good day' even though it rarely lasts a whole day without some aches/stiffness. The unpredictability can make this condition quite frustrating at times as I guess we all know.

  • I know exactly how you feel . I'm constantly tired headaches ulcers in mouth and nose, painful hands feet ect can go on and on . Colasped disc's too, I get fed up takin and paying for my medication . Heart broken as I have been medically retired on ill health at 49 ! Ive have been so down. I'm waiting for a letter on my esa claim . Hope you have a good Christmas . X

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