I am 31 and was diagnosed with Lupus in September 2022 and started treatment which I've responded well and am currently feeling much better. Up until recently I've only been doing gentle stretching, yoga and a bit of walking - nothing much at all. Now I have more energy, feel better and weather is finally improving, I want to start increasing my activity and exercise levels (this used to give me so much joy before the diagnosis).
What is your experience with exercise and did anyone try to build it up so that your body starts getting used to it? Can a body diagnosed with Lupus get used to increasing exercise (nothing olympic level) so that the achiness and fatigue (due to the activity) decrease over time? Did you combine your exercise with strength training to help the progression?
I did more than my usual walking on Thursday and felt achy the next day, same thing happened today after a bit of a longer walk yesterday. For reference, a bit more means 10,000-20,000 steps in one day. I usually do around 6,000-8,000 steps. This was not a big target previously. I don't want to be defined by my diagnosis and still have a full life and feel like exercise is one of those puzzle pieces.
Thank you!
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Blossom751
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The easy answers are yes and yes. You can gradually increase and your body will get used to it as it builds resilience. Strength training is a great idea to help your joints, muscles and tendons support your increased activity after a gap. That being said, all exercise is good. I'd just be wary of jumping straight to curcuits or high intensity workouts. They can absolutely be done, but you need to pace it up a bit first if you haven't done anything high impact in a while.
You will feel rough, achy, fatigued etc for days after each increase, but as you repeat it regularly the effects lessen, your body adjusts, and you can then increase again.
I've gone from being basically bedbound to climbing mountains. Some days are still hard (I'm currently flaring) but it has gotten so much easier.
Morning, I would agree with all Heather has commented on. I’m female, have lupus, I’m 59. I’m part of several ladies cycling groups. I would say take it easy, build up slowly, listen to your body. Dont over do it or you’ll encourage a flare. Exercise is a good all rounder and definitely helps with the emotional and mental issues providing you can get out of bed in the first place. Many lupus sufferers have lots of additional issues and for some the thought of any exercise is off the radar. I’ve been in ICU with lupus, knocking on heaven’s door a couple of times. After 5 years of being diagnosed my meds have helped me have a good quality of life under the circumstances. I’m very grateful for that. Thank God for our wonderful NHS and Lupus Centres of Excellence. Hope that encourages you to make the most of life coping with Lupus . Best wishes….
I think it’s knowing how you are when you exercise. Is this an energy day. Getting to know what is too far, what triggers issues, what doesn’t. It s like everything with lupus, know you, know your body and manage it. Some days you can climb a mountain some times the day is the mountain.
Totally agree with Hamptons. I am a yoga teacher and teach 8 classes a week of "slow, yin and restorative", but because of a one week break (helping my son to move) and the bank holidays, I have only taught one class and boy do I know it. I think it is the lack of yoga that has caused me to flare in my right foot which I can hardly stand on this morning, plus the fact that I did "loads" of walking last week too, one day over 20,000 when I usually do 6,000 - 10,000. C'est la vie on most days is my motto that I say out loud to myself. There's no point getting cross, it just makes everything worse. Off to go and teach my chair yoga class, average age 82, so standing in tree will give them all a good laugh - they'll be better than the teacher today, but boy do those women fill me with so much love and admiration. One of them has had cancer twice and she still rocks up. Anyhoo, my advice, build up gradually. I love the mountain analogy which I might use instead of C'est la vie. Thank you. So go slowly when you can and accept the flares/aches/pain as your limit for that day. Namaste 🙏
Well done! I couple of years ago I found yin slow and boring but it has become my favourite class to ground, stretch and focus my mind. It is one of the few classes that I've been consistent with post diagnosis
You are so very kind. I totally agree with you on the yin; although I do like restorative too especially on a Friday night. I teach a class on Fridays called Fri-Yay Night yoga. Also if you like yin, you might like Yoga Nidra and the practice I found really helpful after my spinal surgery 4 years ago was by a wonderful practitioner called Vanda Scaravelli. She gave me the confidence to get back to teaching. My ladies today were so wonderful; they just never give up and to see them understanding their own bodies is very humbling. Enjoy your yin practice. So lovely to hear from you. Namaste 🙏
For years I thought the gym makes me flare...it took me 10 years to figure out its not the exercises but rather UV light...sometimes things that activate our illness or non intuitive--you have to be mindful and find out what type of exercise and when works for you.
I have UCTD and have struggled for the past year to get to what I considered a decent fitness level but I've done it. I still get bad days and had to have 3 straight days off the other week due to illness but I'm learning when to realise that I need a rest day so I don't push myself over the edge.
I started doing 2 miles of running twice a week, one or two days of 5 mins of dumbbell training (1kg) with 15 mins of cross trainer work or yoga and I'm now at 6 miles of running twice a week, one or two days of 15 mins of dumbbell training (3kg) with 30 mins of cross trainer work or yoga. The pain is so much less and I feel like altering my diet might also be helping with the flare-ups.
I have had Lupus for over 30 years now, I was diagnosed on my 40 th birthday, for next 16 years I managed to carry on working and go to the gym 2 to 3 times a week, try to ride my mountain bike at weekends and look after my disabled mum, so you must do what is right for you xx
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