Any flare tips please?

[happytulip]

Hello All, hope you are all doing ok. I could really do with some advice on flares please. I have recently had The Cough which is generously spreading its way around the UK which resulted in a mild chest infection. I had antibiotics which cleared that up pretty well. However, it's left me feeling like I've been run over by a tank...a big one! My symptoms are fatigue, jaw pain, swollen glands, joint pains in my wrists, elbows, knees and feet. My hands aren't great either. My biceps and thighs ares also very sore. I have tinnitus today which is always a sign of lupus activity and I have a mild malar rash. I am currently on 14mg of pred, aza and hydroxychloroquine. I can not increase my pred as my rheumatologist is really keen to reduce my dose, as am I. So my question is this....What do I do? Some websites tell you to rest during a time like this. Rest to me is painkillers, sofa, pillow and Netflix. Other sites tell you to excersise and stretch and push through the symptoms. I should say that I went to work yesterday which was a physically tough day and am due in work tomorrow. Can you get to much rest in a situation like this. I am not sleeping during the day, just resting. Moving about hurts otherwise I'd be in my garden. What does everyone else do? I've never really heard now people manage their flare days before. At best I just potter about the house. All advice tips greatly appreciated. I think I need all the help I can get to be honest!xx

[Tiras]

Happy; as for me I just keep going, I may have to rest more but, I do what I have to do. I do not have to go to work now as I had to come out 2 years ago due to Lupus, COPD, & malignant hypertension, that is also when the place rashe whatever started on my foot. I have had to go barefoot since then.

I stay Busy in the garden, fishing, and helping my Granddaughter with her 4-H chicken project (she has 18 chickens) had to build a pen and a house for them. Other than that I have no advice.

I do hope you get and start to feel better SOON!

Tiras

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"The Barefoot Gardener"

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[Wendy39]

Hello. I wish I could say that there was 1 thing that helped or a magic wand to wave. If only. I think you have to do what is right for you. I was diagnosed 2 and 1/2 years ago now and I have 3 children, aged 8, 11 & 12. I work 16.5 hours a week at a junior school as a Teaching Assistant, which I love. Unfortunately, as I don't like letting people down, I tend to drag myself into work as much as possible. Haven't had a day off sick for a few months now. I've never been one to "pull a sickie" and my strong willed, single parent mum taught us a strong work ethic. However, I have recently been unwell with the various symptoms but most notably bursitis in my hip and terrible migraine with myalgia. I am currently on a 5 week course of steroids with a view to going on an immune suppressant at my next appointment in July. (The steroids are helping). I have given notice on my job, so am only working until the end of the term now. Just over 4 weeks left. I have no fight left in me. I love the job but my family are suffering. I work 8.50am-3.05pm on a Monday and that wipes me out to the extent that when we get home I go to bed for 2 hours, leaving my children to their own devices at home. Tuesday isn't much better and Wednesday I am home by 12.30, have lunch and then nap until school run time. Looking at it now, it is ridiculous. But when I flare I literally can't keep my eyes open, even if driving! Anyway, my family deserve better. They deserve more of me. But I am also lucky that my husband has a job that allows me to do this. I plan to volunteer in the same school, listen to readers etc but when I feel up to it. I know that giving up work isn't going to be a miracle cure for me, but maybe by pacing myself my flares will lessen. I hope I can plan my day so that I am awake when the children are home from school. I live in hope. I plan to do more pilates. I go once a week now but would like to do more. I walk when I can. I did the Race for Life 5k on Sunday. I walked and even that has left me with my hips aching. So, I guess for some people doing nothing is good and for others working through it gently is right for them. You have to really have to listen to your body and how you feel. That can change day to day for us can't it? If you work a day and have a day off before going in again, rest on that day off. Do you have a good, balanced diet? I'm not an angel with food but I do try to cook as much home stuff as possible and have my 5 a day etc. Can't think of anything else at the moment. I hope your flare doesn't last too long. It sounds like this cough has wiped you out a bit. Give your body chance to recover. Best wishes.

[minka]

pred is the worst one and u should be on calcium tablets with this as it is bad for bone and also bad bad for ligaments try to get off this stuff its the devils medicin look it up on the web see if u have any of the complaints this may give an explanation as to other problems

[happytulip]

I am on bone protection with alendronic acid and calcium d3. I've been trying to reduce my pred for a year and have managed to reduce from 20mg to 14mg in a year which has been a major and very painful achievement for me. Yes prednisolone maybe a medicine with nasty side effects but everytime it has been reduced I have landed up in a coronary care unit with pericarditis. Unfortunately in my case I am reliant on the steroids to get me through the day yet at the minute my lupus is going into overdrive. I have previously had to have intramuscular injections of steroids and at times emergency IV infusions of 1000mg of steroids. Neither of which I wanted due to the side effects but had to have to actually protect my heart and lungs from any further damage. I also have POTS which complicates things further as I collapse when I flare.

My diet is well balanced and I make sure I follow an anti inflammatory diet. I take gentle excersise and am usually able to manage my pain with regular analgesia. However, my last two sets of bloods have been abnormal and have noticed an increase in symptoms depending where I am in my cycle. Things have got significantly worse since I initially posted. I have had to use morphine for the pain as I can't take NSAIDS due to my knackered kidney. I have a horrid feeling a trip to the hospital is on the cards. Thank goodness for my lupus nurse who is in communication with me. A small blessing (slight) is that I am a medial person myself so kind of know what's needed, but you can't get lifestyle tips and experiences from other sufferers out of a text book. Thanks everyone for your help, it's great to share ideas and tips. Gives me hope. Sadly the morphine isn't doing much at all and I'm pretty convinced an infusion is inevitable 😰