I was diagnosed with lupus last month with symptoms of joint pain, continuous mouth ulcers, an arm rash that wouldn’t go away and obviously all the lupus blood markers and possible lupus cystitis (I have a urology appointment in a few days). Fatigue was also a big problem as I’m a nurse. I started hydroxychloroquine on May 19th and about 2 weeks ago I noticed that I wasn’t having joint pain on standing/walking and my rash had cleared up and my bladder felt so much better as the meds were finally working!! I was overjoyed, but I had a ridiculously busy week - 5 12.5hr shifts in 7 days. I kept pushing myself and today I woke up with my rash having reappeared, my hip sore and mouth ulcers appearing at a rapid rate. I also feel very tired.
I think this may be a flare, but before I wasn’t able to recognise flares as I didn’t know I had lupus so this is the first one I’ve been aware of. I am feeling quite emotional about this - mostly fear/anxiety I think, as well as some disappointment as for the past 2 weeks I’ve felt better than I had in about a year.
Has anyone got any tips on dealing with the emotional side to a flare? This is my first ever recognisable one and I just don’t know what to do.
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DaniMichelle
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Hi , i can empathise with the emotional side of a flare. I can get quite down and weepy when I am flaring ! I am on antidepressants which do help me , though was on them before diagnosed with lupus 2 years ago. I too am a nurse and the fatigue has gotten the better of me so am seeking ill health retirement, likely to be non disciplinary dismissed next week when I meet with HR etc. Hopefully then I should higher tier of ill health pension, though unknown until not working and its processed but OHS Doctor feels I should qualify. Hang on in there when you feel emotional when flaring ... it will get better and pass, just take each day at a time and listen to what your body needs , plenty rest is key and learning to pace yourself... though this is easier said than done !! Look up 'Spoon theory '... perhaps you are already familiar with it ? x
Hi, completely agree with the first reply - you have to try and pace yourself and it's easier said than done. I've had Lupus for a lot of years and still kid myself that I don't have to give in to it. The bad days pass, be kind to yourself and let people know how you are feeling so that they can support you x
Thank you both so much for the advice. I don’t know anyone else with lupus - I thought that because I’m a nurse I could handle what it throws at me because I’m used to medical things, and yes the numerous appointments and hospital visits have been fine. But I wasn’t prepared for the fear and disappointment of when a flare starts. It’s so lovely to hear from people who have it and have had it for a while - it’s really reassuring so thank you x
Hi lovely, thank you for posting. I think its about pacing yourself which for me has taken some time as when you feel good you want to continue as you would without any worry then bam! It side swipes you. For me I joint pain and extreme fatigue and I know I have overdone it. I usually know that im about to flair as have severe pain at the back of head and my glands swell at back of neck. I then kick myself as I know have done too much. Finding the balance is hard. I have a crazy week at work this week. Travel and conference presentation so I know I need to pace myself sleep as well as I can and listen to my body. I too am on hydroxychloroquin and had a steroid injection about 8 weeks ago it has changed my life and I mean it. I had got so used to the pain that waking without any was a revelation. Try and listen to your body xx
That’s really interesting actually - 2 days ago I had such intense pain at the base of my skull and my glands swelled up yesterday. I put the head pain down to the fact that I have a Chiari malformation, but I wonder if this pain could have had something to do with the flare? I would randomly get this pain previously and always assumed it was the Chiari, but perhaps my Chiari plays up prior to a flare. I feel like I’m having to relearn everything about my body. I’m going to rest today as back in work for a 12.5hr shift on a busy NICU tomorrow. Thank you so much for your reply, I love hearing from other people as it reassures me so much. Logically I know I’m not the only one with lupus but sometimes it feels like it x
You are welcome. Lupus is so complex but for me the intense pain at back of head and the swelling of glands is a sign for me.
I am still not fully diagnosed, its been 4 years of tests and until recently I felt like it was all in my head. Now being treated for lupus which they say is a diagnostic in itself. The medication has given me back a life that as a 45 year old I should have was just so used to waking in pain every day. I am fed up of consultants trying to deflect it though on my depression and anxiety. What I will say os you know your body better than anyone
Finally I feel I am getting somewhere. Take all the support you can x
It’s so difficult for diagnosis isn’t it. I am thankful that I have an incredible rheumatologist and on my first visit she said to me that I definitely have a connective tissue disorder, and I meet the criteria for lupus so that is what I probably have. It’s one of those things where they can never give a definitive diagnosis, so frustrating. I really hope you get some luck with it soon. Thank you, look after yourself! X
Hydroxychloroquine is usually the first med they put us on..it may be that u could do with a short course of prednisolone..this happens when I flare.. unfortunately I'm on steroids long term at the moment as my lupus flares when I drop from 10 to 5mgs.. maybe u could get in touch with your rheumatologist to tell them your flaring..that's what I do..although my GP is very good so now I usually get in touch with GP n she gets advice from my dermatologist who is treating me.
Your emotional response to this flare is completely natural..I get very weepy n angry that I have this illness..I'm reminded of it every day because it's affected my whole life including my mobility..but I still have good times with the proper meds I'm better than I've been for years..but I still flare despite taking all the necessary precautions..it's soooo frustrating!!! I just have to go with it..don't try to fight it because it will just make it worse..if u need to rest then u must rest!!
U are not alone n u can always have a rant on here because we all know what it's like living with lupus..we have cyber hugs n cyber hand holding n cyber shoulders to cry on!! It's a fabulous forum xx
Hi, thanks so much for the reply! This forum has been amazing, so much support available and it makes me feel so much better! I’m on 400mg hydroxychloroquine, do you find you get many side effects from the pred?
I actually just laid down and had a nap this afternoon and woke up with another mouth ulcer I know it’s small compared to what lupus can be, but it’s just so frustrating as i was feeling so much better. I feel ridiculous for moaning about it but I just feel so awful. Xx
Don't feel awful for sharing..the thing is with flaring..symptoms pop up all the time..u get used to some but then lupus throws something new in..it's pants!!!
I've got SCLE which affects my skin mainly..n skin is everywhere so I know how sore bits can be..n then comes the fatigue n generally feeling unwell..pred does come with side effects..mood is definitely affected with me..some docs use it n others r against using it..so depends on how your doc feels about them.. I'll just say that they really help me n I'm willing to take risks for better quality of life..pred has sorted out all kinds of serious all over body rashes xx
We can I appreciate everything that you have just described above, because most of us have lived those very same days that you have expressed and Described in detail.
The first thing I can tell you as a Lupus thriver is to start to recognize when we are beginning to “push ourselves”- that’s the first sign that I know I need to stop and rest.
My body is screaming at me to slow down, and I’m like how I can do this one more afternoon and then rest tonight… Well that may put me down for the “next few days”, just because I did not stop and rest at the first sign that my body was screaming “slow down, rest”.
The best way to describe it is when you get the flu, you don’t push through the flu - you stop!
Your body screams at you to stop and rest, so you have to listen to the signals that are going to come at you sometimes very sneakily or sometimes full-blown - and it may vary from year to year and month to month. We just have to be very aware of any changes and stress that we are putting on our bodies which can trigger flares .
If you can take the time to put an hour nap in the middle of your day while you are working, that could probably make a big difference. In the book by Sara Gorman – “Despite Lupus”- she learned that she had to rest two hours every afternoon in order to be productive in the mornings and the evenings.
I learned early on that I had to rest every weekend in order to be productive during the week. Everyone learns what’s best for them and how to handle it , and we can tell when we have gone overboard or we know when we have pushed a little too far - like during the holidays - there’s so much family activity that can be a major overload and trying to work and take care of family too.
Stay out of the SUN - it will drain you in a heartbeat and Cause a flare and “rashes”-
I have even had migraine headaches from the sun, chest pain from the sun, and this is when I was overdoing it and I was in a place where I thought the sun didn’t bother me that I learned really quick, or was that really slow 😳💜. Even “walking to the car in the sun” can cause you to Flare. Tinted windows help a lot in the car, find shade immediately, stay out of “fluorescent lights” - WORK- that can be a problem 😕
How I dealt with it was being very proactive and trying to look for ways to associate the flare with what might be triggering it. One of the best things you can do if you have lupus is to figure out what triggers a flare, and start avoiding those things.
So if I got a flare, I'd sit down and think about what I was doing before it started. Was I spending time in the sun? Drinking wine? Got too overtired or stressed?
I learned by own triggers were sun (which I now avoid like the plague), sulfites (which is found in wine and some other products and a common trigger for lupus), certain foods, and too much stress/not getting enough rest.
When I started avoiding those, I have far fewer flares, only rarely now.
So be your own detective! Start keeping a log of your activities and things that may trigger them... Once you can identify your triggers, you may be in more control, feel better, and have fewer flares.
Also, pamper yourself during a flare. Get more sleep, stay out of the sun, eat healthfully, avoid too much stress and alcohol.
And you may need to change your lifestyle if your work is too stressful... avoid double shifts and take a less stressful job if necessary. 12.5 hour shifts may be too much for you, so you might want to look for a nursing job that doesn't require that (in a doctor's office, private duty nurse, etc.). I had to change jobs to reduce my stress, and am very glad I did because overall quality of life is better, and reduced lupus flares.
I'm newly diagnosed too, before I knew what a flare was whenever I got what I used to call 'the mouth' (ulcers in my mouth and throat) I used to feel horrendous and basically just needed to take a step out. I get emotional as I feel frustrated with my body, then also cross that I can't just push through. I used to think I can't have a day in bed because I have a sore mouth, I can't cancel that event as the gp says it's not infection its just ulcers, despite the fact I felt like I had flu.
I also felt better when I just did what my body was telling me too and rest. I found my emotions were easier to deal with when I felt physically better.
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I know it’s small compared to what lupus can be, but it’s just so frustrating as i was feeling so much better. I feel ridiculous for moaning about it but I just feel so awful. Xx
No diagnosis yet
Confusing antibody test results
Could I have Lupus?
POSITIVE ANA but negative antibodies.
