One continuous flare?

I read a lot about lupus flares. I started experiencing symptoms just over two year ago though with the benefit of hindsight there may have been earlier signs that fit the picture. I was finally diagnosed 6 weeks ago although treatment started with steroids 6 months ago. i am now on hydroxychloroquine amongst others. In that two years, I have gone from a fit capable mum with a part time job to a mere shadow of myself. Lupus has moved across me like an eclipse. I feel like it has been and continues to be one big relentless flare. Is there any hope that one day it will subside from this, or is this how it is for some people?

12 Replies

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  • Sorry you seem very down this is ok to feel like this. Things should get a little better with the correct medication, are you seeing a specialist in lupus. This is important. Insist you get some help to break the cycle. Good luck x

  • That's exactly how I feel. When I look back to a year ago when I first went to see the consultant (and I thought I was going because I had carpal tunnel syndrome) and I think about how relatively 'well' I felt compared to now, it really frightens me. I too have gone from being an active mum of two who enjoyed going to Zumba, to an old woman who pulls along a granny trolley behind her as I can't carry shopping bags, has swapped her manual car for an automatic as my left leg has so much reduced feeling I can't use the accelerator properly, and as for Zumba.......pah....you can forget that! Everything from the neck down seems to hurt and at the moment my rib cage is so painful I can't get comfy in bed nomatter how I lie! I don't have a diagnosis yet and am not on any meds. I feel like I have stopped living and started existing. It gets to 2pm and I'm counting down the hours until I can go to bed (to not be able to sleep when I get there!) and I can't go out with friends/husband any more unless it's during the day. I too feel like I'm in constant flare as I've never had any 'good' days for as long as I can remember. I've just had a battery of blood tests done, all of which came back negative but I haven't got the ANA results yet. I'm terrified the consultant is going to discharge me because of this and tell me there's nothing wrong with me because clearly there is! I'm 33 years old, have never really drank, never smoked or took drugs in my life, I haven't abused my body so there is no reason why I should feel so old!!! Sorry I haven't answered your question, but wanted you to know I'm marching along in the same band as you!

  • Hi Angelcake, your post could have been mine. My left leg is soooo much weaker and I have to work harder on exercising this to avoid foot drop. Physio also said today that hands are now starting to atrophy, I can't get comfy in bed either, sore to turn over in bed and sooooo fatigued the past few days. I now know not to congratulate myself too much when I have a few good days as it so easily changes. Physio said today to perhaps try a different DMARD as I am still flaring albeit now so intense or for so long as before I went on the hydroxycloroquine. It's all seems a learning curve still and the goal posts just seem to keep moving. I hope you get the help you need too.

  • This sounds just like me!!!! I was diagnosed with lupus 20 years ago and things weren't too bad and I managed to get on with my life looking after my two children, apart from the odd trip to hospital when I was then diagnosed with Hughes syndrome (sticky blood).

    However the last couple of years have been dreadful culminating with me being off work since mid January with hardly any good days and getting so much illness including stroke like symptoms. I'm 54 and have decided to seek ill health retirement as I need to take some stress out of the equation and start thinking about myself. I feel so sorry for you young mothers and hope that you are able to get help and medication to make your lives more tolerable.

    Take care

    Jane

  • Hang in there Gilli!

    Please be patient because you and your doctor need to find the right combination of meds for you, but the odds are that you’ll feel better soon. Be prepared, because sometimes you’ll just wake up to a flare out of nowhere, but there will also be good days for you to enjoy with your kids. I was diagnosed 10 years ago and I felt like you for the first year, now I even have periods were I don’t need meds.

    I suggest reading this speech about living with lupus, which explains what can you expect of this disease: butyoudontlooksick.com/arti...

    Good luck!

  • Hi,this is me also, I was also diagnosed 6 weeks ago, am on treatment and have been in a continuous flare for a year, but mine is mouth and nose ulcers, these are now under control with meds, Azathiorpin and Prednisolone. Now I am on prednisolone on a constant basis, all be it temp constant basis I am free from the ulcers, but still have other issues, like the confusion and brain fog and tiredness, and aches and pains, I am up and down most days, and am not being truthful about how I feel to my husband, I think he gets a bit exasperated with me tbh. Pls feel free to PM me if u want .. we can moan about it together ;)

    J x

  • Thank you all so much for sharing your personal stories. I'm relieved it's not just me but so sorry that there is so much hidden suffering out there . Yes I am seeing a specialist but next app not till march. Apparently it can take several months for treatment to kick in.....

  • Gilirun....loving these blogs at the moment ,were all so similar ,ive been in an everworsening flare for 12months ,so why isnt it ending i ask?when ,im taking the meds ,changing the lifestyle ,what more can i do?i feel for you and promise i know exactly how you feel;(pretty crappy...........its hard to imagine remission,lets pray it arrives for xmas?keep well ,brave;)

  • We are indeeed all in the same boat with a similar pattern...lets hope this boat takes us to calmer waters sometime very soon....

  • Really feel for you. I was diagnosed over 18 years ago and for the last 2 years I too seem 2 be experiencing a continuous flare, despite my bloods saying I'm not. I have had 2 pack in my job as it was a case of either work, come home & collapse or be a mum & give up work, I'm not physically, emotionally or mentally strong enough 2 do both any more. There IS hope, in the last few months I have found things r easy up, very slightly, but hey, it IS improving. Just remember, lupus affects every1 differently. Good luck my lovely and hope it eases up 4 u soon x

  • All so sounds so familiar. I have not been diagnosed yet but have not been well for about 1 1/2 years now. Feel like I have been in a continious flare now since may. Only on codiene for pain which doesn't help and amitriptyline for help sleeping as like you I go to bed exhausted yet can't sleep!! I have gone from a hands on mam to a drained shadow of my former self. I just want to wake up and for this to of all been a horrible nightmare, but guess thats never going to happen. Big hugs to you all xxx

  • Never say never megs, NOTHING is predictable or certain with lupus. Just try 2 keep positive (as hard as that is at times) & hopefully u can get u're diagnosis soon && try 2 get back 2 being YOU again. All the best x

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