I’m 45 and was diagnosed with SLE 12 months ago. I’m on 200mg hydroxychloroquine per day. Fatigue and joint pain are my main symptoms and I’ve had 2 flares this year where I’ve just had to go to sleep mid afternoon for several weeks to recharge.
I have a stressful job- I’m a self employed partner in a law firm- and I am aware of the correlation between my stress levels and my flares. Does anyone have a high pressure career and have any insights or tips as how I can to manage this, other than stepping off the career train? I’m still so new to this and am finding it quite difficult to navigate.
Written by
RachelMaryS
To view profiles and participate in discussions please or .
I work in healthcare and have found this also an issue. I work flexible hours which allows me to work in a way that best suits me. One thing that really helped me was working from home one day a week in the middle to remove the energy I used getting ready and commuting to work. Even if the commute is only a short walk. Not having to shower if I don’t have the energy or walking to the sofa for a 10min Power Nap really helps.
Have you looked at the lights in your work place? I had fluorescent lighting and it’s insane how much it contributed to the work stress/fatigue. Have been changed to LED and it has made such a huge difference. I also have meditation apps and try to go do a 5min meditation when I start getting worked up.
I think working in healthcare and really seeing how the course of a chronic disease like this can really change depending on how much you are willing to adapt and listen to your body, has given me perspective. In the last 2 years since diagnosis I have changed my attitude to work. I always leave gaps between meetings (never back to back) to allow me to recharge. Never miss meals. If I go away for work I always travel day before, never travel 1st thing then work/go to a conference. And I can honestly say I think it has made me better at my job! Also in some ways more respected. Because my energy is limited I give to the things I know I will have the most impact with and as such I’m more productive.
I still feel left behind sometimes and sad I can’t chase all the opportunities. But I have found a good new way of working that makes no apologies but also by no means do I see it as stepping back.
Hope that makes some sense and is helpful to you in some way. It’s such an individual journey, finding a new way to work while not forgetting different does not need to mean lesser.
I wish I had better news but since my early 40s I have had to rest and sleep for 2 to 3 every day in the afternoon. If I don't I just crash even worse the next day. As you start peri-menopause and menopause the fatigue generally gets worse and also Lupus symptoms, joint pain etc. The hormonal ups and downs improve though. I have my own business and have worked at home for 25 years now (Law Costs Draftsman) and had it not been for that I would have crashed and burned years ago. I am 54 and know I could not be reliable if I went out to work as Lupus is so unpredictable and slowly progressive. I would not be a reliable worker and I think I would spend a lot of time off work. I tailor my working hours around fatigue and maybe do a couple of hours a day or in the evening if I'm having a particularly tired day. NewToHats is right, maybe your body is telling you now to try and work out a new work pattern that suits it or a different career path in Law. There is no pushing through this kind of fatigue or your body will punish you if you try. Keep as healthy and fit as possible as it really helps and think now about how to dial down the stress and hours you work ready for when you may not be able, as you could end up with weeks off because of constantly overdoing it. I personally have found a routine of rest and a little work each day (not full time by any means) keeps me from constant flaring and keeps me out of hospital. Listen to your body, if it needs rest then you must rest for as long as it needs for you to feel able to carry on the day. Sorry it's not good news but honestly it helps to prepare for the future in the long term while you still have options. I hope you have a supportive family as 100% this helps. I feel the battle of older age already (feels like I'm 74) and it's getting harder to keep Lupus from winning. We all keep up that battle with the wolf as best we can. Keep fighting but also keep resting inbetween. 💜
Just a side point, I had my first occupational therapy appointment last year and it has been the most helpful thing. I was sceptical but their remit is to keep you working and help you to do that with help with getting your employer or disability benefits to get you office equipment tailored to your needs. How to manage fatigue etc, making a chart etc of your day and how you feel etc.. and just chatting to my lovely occupational therapist has helped. It was free through my Rheumatology department and now I have zoom meetings with her every couple of months to see how I'm doing. Maybe worth asking about at your next Rheumatology appointment.
Thank you so much- really helpful. Just seen my consultant who pretty much said my lifestyle (diet exercise etc) is as it should be but stress levels and working hours need to be addressed to help prevent flares. Im self employed so need to have a discussion with my partners with a view to cutting down I think.
At 45 I’m already on HRT as hormonal dips and rises seem to trigger flares…. Although the hormonal and lupus symptoms seem to me to be almost identical.
That seems sensible, until a cure is found it's a case of lupus management, trying to prevent flare ups and damage to organs etc.. as you go on with this you'll find its almost a full time job keeping on top of this condition. Let alone other conditions that have a habit of appearing as time goes on. Work is more difficult but if you can have an element of flexible working rather than rigid times and days you might find that more beneficial. I have sjogren disease too and struggling with my eyes. I know it won't be long before I can't see properly to work but I'm trying to make plans now before that happens. Good luck and if you haven't already I would recommend joining a lupus uk group. Ours has talks once a month from medical professionals online and a whatsapp group. It's been a source of so much support and information. Can't recommend it enough.
Your post touched me. It made me reflect on how our illnesses- my diagnosis is undifferentiated connective tissue disease - cannot help but profoundly affect our lives.
The word that I think of often is adaptation. I spend a lot of energy learning how to manage and incorporating new things to help with new issues.
NewToHats is so right about the lights at work. Are you photosensitive? If so, there may be many things causing flares that you haven’t thought of. Forty years ago, when I was being worked up for months of feeling awful, I noticed that I hated using the Xerox machine. Many years later, when it was clear I was photosensitive, I read copy machines produce a light lupus patients are sensitive to.
I once read a study that the single biggest factor in lupus kidney function was sunscreen based on a study of Puerto Rican women with lupus. I mentioned that to my rheumatologist and he was not surprised. We have more control over sun exposure than stress.
There are new products that allow us to swim, sail and enjoy our walks. We look like aliens but stay safe from those rays!
Please let me know if you are interested in the products I have found that are truly effective.
Hi there Rachel, I hear you! In a similar self employed scenario myself. I blundered through for a year and noticed the correlation btwn stress & flares despite best efforts. And learning what life can & cant be like going forward.
I have made the huge decision to cut my client base by a third (& income) and work slightly longer 3 days and use the remaining days to listen to my body. Its HARD but worth it. It's the only way I can manage energy, pain, work everything while I try and come up with a better plan - the fatigue renders the brain useless otherwise, and the body appreciates it. Financially it's a problem but keeps me mobile, in touch, stimulated, financially viable etc. Not a great response, Im sorry to say but youre not alone. And there are plusses - feeling like Im taking myself inhand rather than the Lupus dictating is a little bit of a relief. Small wins count while I make a shape out of things.
Learning to genuinely allow pace & nurture myself after a lifetime of doing things for others... is a habit hard to break but its worth it. .
thank you everyone for your responses - what a wi deadly helpful space this is. I’m still at the blundering stage but on the plus side know what I have to do with my case load and working hours. Have just discovered that I have an income protection policy with my critical illness cover and Lupus is on the list of claimable diseases - I dread to imagine what loops I will need to jump through to make a successful claim for reducing my working week to 3 days but I’m going to give it a try.
Got the electrician coming to work to change the lighting- thank you to all of you who suggested this may be an issue. Also just joined a lupus webinar that was advertised in the Lupus Uk Facebook page so hopefully I can get a better understanding of the illness
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Lupus and Feet
Overactive bladder and autoimmune illnesses??? 
Lupus and Wahls Protocol 
Stress and lupus
Running with lupus
