Can anybody define a flare up !!: Good morning... - LUPUS UK


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Can anybody define a flare up !!

Donnygirl profile image

Good morning Luppies. Can anybody define a flare up for me please. Every day i am in constant pain and some days cant even move I feel like every bone is broke. With the help of co codamol this eases it for me. I have shocking memory loss even were i can be doing something and forget what im doing. I find it hard to come to terms with forgetting so many of my memories and now keep a diary of places to go and things to do. My breathing is bad and struggle with it. I get approx 4 hours sleep on a night because of the insomnia, but then again so tired !!!! I was so badly damaged by the rash over my body that i am now left scarred, but thanks to the hydro and steriods the majority of that has cleared. I thought the meds were supposed to take away the pain and generaly make me feel better... no such luck. I can say this year i have had 2 good days and like an idiot try to get everything done when in that frame of mind, realised that this is a big mistake. I have been poorly for over ten years and only just been diagnosed with lupus sle, Like most people on here fobbed off for years and told it was my age... im only 48 !!! I also have a liver disease called PBC and they thought it was down to that until my new liver specialist said no and sent me to see a rhuemy who specialised in lupus. Please help me define when im not in a flare.

thank you for listening


12 Replies

All the symptoms you described are what I call part of a flare. I also feel it in my stomach/chest, can't tolerate noise/lights/very fatigued/can't sleep/depression sets in prior to it occurring, joints painful/inflammed, stiffness in walking, memory shocking etc etc. . I feel that I was still struggling when just on the placquenil but now on methotrexate too it is helping lots. I still feel the flare but it feels minimised and no where near so intense. Non flare up is when I have the energy to manage things, joints don't hurt all day, stiffness is reduced, lights are tolerated, I can have a conversation without forgetting everything. To avoid flare ups though I always save energy now where possible as this reduces the flare ups. It took me a while to get on the right meds and I felt in a permanent flare up prior to the introduction of the methotrexate. It may take time to work out what meds suit you so that this can be controlled. Hope this helps x

Thank you mstr it tells me i am in constant flare. I am back to see rhuemy this week and think she will either increase my doses of meds or change them. They say to avoid stress but with loss of job only allowed 27 a week to live on and other daily things we live on stress :-(

To me a flare is a worsening of my symptoms. I accept I feel c**p most of the time but am able to function ie get out of bed, work, sometimes I even go out socially ;) A flare is when my symptoms disrupts this. Sometimes I can only manage to get up and work (I do part-time) and that is all I can do. A bad flare is when I take to my bed...

Donnygirl profile image
Donnygirl in reply to DaleDiva

I suppose we must all deal with our flares in different ways. Ive just learnt to live with it. There is days when i totally do nothing because i really know i cant im lucky to have full support of my family :-)

mstr profile image
mstr in reply to Donnygirl

Hi I think you are right to explore the meds with your rheumy. I can;t emphasise enough how that changed things for me. I still have to pace myself and have days that, like you described, I can;t do anything much but on the whole it is being controlled now. I explained to my rheumy that the placquenil alone was not touching anything and that I had steroid injections that had worked but my hormones were affected - I have had no side effects since the methotrexate and my life feels back on an even keel. Good luck with it all xx

Im going to make a note of these meds and ask if i can be tried on them. I am willing to try anything now.

mstr profile image
mstr in reply to Donnygirl

Hi, I guess it's no harm to look into the meds yourself first so you are prepared about what could be offered and then when/if the rheumatologist suggests something you are able to make an informed choice. I hope it goes well x

Thank you for all your advise everyone i will let you know how i get on with her tomorow :-)

Good luck for your appointment Donnygirl I really hope you get some more help when you see your Rheumy, just remember if your not happy with there treatment you are allowed to ask for a second opinion, I did and I now have a better control on my illness, I now go to Addenbrokes in Cambridgeshire with a Dr Hall she is wonderful (I think so anyway, don't know if others don't) I was seeing a Rheumy in Kings Lynn and after 5 years of "treatment" he admitted he didn't know much about Lupus!!!! good job I was having a bad day or I think I would of swiped him. Keep smiling :D xx

Just to let you all know. Seen my lovely rhuemy we did discuss the medication and she wants me to stay on them a little longer has it can take upto 3 months for the hydrox to start working properly. We discussed my hair loss and also now have to see a renal specialist. She also has mentioned that they are going to start a lupus clinic at doncaster infirmary with all the correct specialists on board. I always feel i can discuss things with her and she never makes me feel like a hypacondriac.

mstr profile image
mstr in reply to Donnygirl

Glad you managed to have a good discussion and it sounds promising re the lupus clinic too x

A flare is where symptoms suddenly get worse.

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