Our Topic of the Month for September is exercise. Exercise is an important way to keep you in good health but it is difficult for many lupus patients who experience extreme fatigue as well as joint and muscle pains.
We’d really like to hear from some lupus patients who have managed to exercise and how they found it. We’d like to hear recommendations for small exercises that can take into account fatigue and joint pains.
Please share your tips and experiences in the comments section below or email paul@lupusuk.org.uk
Written by
Paul_Howard
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Before my lupus diagnosis, I did kickboxing 2 times a week and ran as much as I could. After my diagnosis, I thought it best to avoid exercise as I thought it would cause more damage to muscles and joints. But unfortunately I spiralled into a depression. Exercise releases endorphins that make me feel better so I continue to kickbox twice a week, and now run 5 days a week (Training for London Marathon for Lupus UK). Obviously because if Lupus I consulted my doctor who recommended that I take it easy on myself, which I do, when I am flaring I do as much as I can, I have a fantastic kickboxing instructor who adjust exercises for me when I am struggling.
There are some simple exercises I do at home, when I am too ill to go out to class. some simple leg raises, whilst lying on the floor, or even sitting on the couch. Stepping on and off the bottom stair, arm stretches etc. But remember, with any exercise, always consult your doctor first.
Just seen a physio this morning; she recommended very easy Pilates (I used to do quite a tough class but had to stop due to fatigue and pain) and also Tai Chi. Definitely better to see a physio or a medic before starting anything, because I think you need to work out what's causing the aches and pains, so that you don't make anything worse.
i have just discovered skateboarding! find a flat, smooth walkway or cycle path and you're away. Also light weights on an exercise ball are great and yoga i find is awesome for mind and body. My partner is a physio so i am lucky in that respect to have a training program me designed specifically for me but i only exercise if i am feeling strong and not during a flare. Even walking does the trick and exercising outdoors is much better than indoors, just watch out for the sun.
I love swimming and doing yoga which I can make easy or more difficult depending on how I feel. After six months of getting my medication sorted, I am feeling better in myself and am trying to do more exercise to try and get off some of this excess weight I have put on from the steroids. I actually feel much better when I have exercised and I also sleep better. I have just also got back into scuba diving which I am thoroughly enjoying but I am totally exhausted afterwards. I think the answer is to do what you can when you can.
Really good info here .... listen to your body! However, getting moving does release those feel good endorphines .. .... and that can't be bad. I am a great follower of yoga - body, mind and spirit and do two classes a week. My instructor is very supportive.
I also teach fitness now for two levels of participant and tailor classes to the group. Besides some movement, being in a group is a great boost and lifts those isolated feelings. I manage my energy with a healthy diet, water and rest.
I find it better to do what you enjoy and it won't be a chore - smile and the results will creep up ... x
I go to a place called ladyzone which is a gym that uses machines which move but you have to offer the resistance I am in my 3 year now and I love it no need for expensive gyn wear or shoes it doesn`t make you hot and sweaty and because it`s a ladies own gym we all have a great natter the laughter is amazing and I always come away feeling better am losing inches and toning up there are other ladyzones around the country and I would recomend them
i dont take meds for my lupus and am flaring but i do something everyday. i garden and i walk as much asi can. i also do some water aeorobics and if i can afford to some pilates and group excersize.
i find it takes my mind off the pain and makes me feel better for a while so its worth it..
As joint pains are a big problem for me, made worse by any repetitive task, I manage swimming very well. Keeps me active, no impact on joints, gives a heart workout and luckily they also have a hot jacuzzi pool I can get into which is wonderful. You can also go entirely at your own pace. In addition gentle walking with the dog everyday is so good for thinking time and relaxation. The dog walking I need to do on a daily basis, but the swimming is something I can miss if having a bad day, but it often makes me feel better anyway!
Before I became unwell 9 months ago I ran , cycled , walked , hill walked and was a complete gym junkie !! Due to joint pain and muscle weakness and of course the overwhelming fatigue , this lifestyle is no longer possible .. I can't begin to tell you how much I miss my exercise and the buzz I got from it . I do as much as my body lets me and I probably still push myself a bit ..the social side of going to the gym is still important to me so I try to go as often as possible and have found that using a cross trainer puts little impact on my joints and helps burn a few calories and work up a sweat ! The down side of the gum is that regulars who have known me and how keen I've been have thought I've hurt myself training and have commented , it's sometimes difficult 2 explain to people how lupus affects you .
What I'd say is find an activity that you can do comfortably and you can adapt when a flare happens . It's important to keep confidence and morale up and exercising is a good way to lift the spirits, but bare in mind somedays living with lupus and the challenges it gives us is exhausting enough and it's an achievement in itself to get through the day .. Cx
I bought a zen-chi massager years ago which is gathering dust since I got a puppy in Jan. I used to go to the gym & do full workout & they had toning tables too which I used as a cool down, I also swam & did aquarobics but after my stroke (thanks lupus!) I find it impossible to do any of that - I cant get out of the pool ccos my right side is a dead weight - embarrassing,scary & impossible to dry/dress afterwards. My puppy is a giant breed, insane in some ways to have her BUT the breed DOESNT NEED MUCH EXERCISE but is happy with as much or little as you are able.Everybody wins!!
I go to a toning suite three times a week or more. I sit in chairs and do all the exercise you would do in a gym but the chair are moving you as you apply pressure either with your arms or with your legs. There are beds as well but you don't have to apply any pressure on the beds.
This really help the pain in my joins as the water in the swimming pools is just too cold for me and I also cannot do any exercise that will cause me to be breathless.
hi paul
Exercise for is so important to me as it makes me feel normal and it does help me with my constant fatigued,i go swimming twice a week now, it used to be at least four but i couldn t cope with that so twice is better than nothing.i also cycle a couple of times a week just locally around where i live not racing but gentle cycling and thats soooo good for me as not only does it help with my muscles it also gets me out and about even when i feel down and fed up i will make the effort.
i also walk my dog everyday without fail even in bad weather and as time has gone on and my fitness has improved i dont fear pysical exercise like i used to. i have learnt my limits which is all us lupies can hope for any movement is good.
my doctor said to me do an exercise you enjoy even if its just a gentle walk it will make you feel better,and he was right.
good luck with anyone who is looking for a comfortable exercise to do.
Personally I enjoy exercise, in particular I find it makes me feel better mentally. I would say it is very important to listen to your body and let's not forget not to overdo things when we're feeling well. I would definitely recommend yoga to anyone. It helps to get the body stretching a bit but also it can be very relaxing I have tried more aerobic things like dance and aerobics but tend to just do these occasionally as they do make me feel quite tired and sometimes for some reason I feel sick after too much physical exercise
I used to be very fit, pre-lupus, so when I became very fatigued and consequently couldn't exercise so much, my muscle bulk and tone depleted.
What I then realised was that with less muscle tone, it took more effort to do exercise. And so it became a bit of a vicious circle; the more tired I got, the less exercise I did, and so the less muscle tone I had. That then led to it being harder work to just function, walk the dog and so on.
These days, I'm much better. Being a dog owner I had no choice but to always dog walk, no matter how fatigued I was or how much pain I was in, even if that meant crying with pain in my feet, or being overwhelmed with the desire to lie down on the country tracks for a nap! As my health improved, I built up my stamina by building up my dog walks. Then I added in swimming, starting off gradually. If I overdid it I paid the price, for example getting costochondritis. I only build up by about 5% (time) per week, and only if I feel well enough to. I never exercise to the point that I feel tired, but I do try to get a little out of breath or a little sweaty. I also now cycle and do pilates. I personally can't run or do aerobics, as my muscles and tendons just complain too much, and I end up with injuries, which set me back. I don't do more than one exercise item in a day (except I can dog walk on top of a cycle or swim etc), or I find it too much, and I always allow at least 3 rest days per week, but again, I always dog walk - that doesn't count as exercise to me these days!
I still have my ups and downs in terms of health, and at the moment, for example, I have myalgia in my thighs and my hip flexors are really sore, so I've just taken a rest from cycling, to see if it helps. But if it doesn't make a difference, I'll probably try a 20 minute cycle and see how I feel afterwards. If it doesn't hurt me, I'll go back to cycling again, building up gradually.
If I flare, I don't stop exercising. Instead, I just reduce my exercise in both intensitiy and time spent exercising, and perhaps have more rest days than usual. I just listen to my body. If I cut out exercise completely, not only would I be stopping all those happy hormones, but I'd be going back to square one, and all that muscle tone would be lost.
I believe that once you are in the habit of exercising regularly, you really do get to understand your body and what works for you, and you become much more positive. What one person can do will differ from another, and we all just have to work within our own abilities, and find something that works for us, and most of all, something that we can enjoy and have fun with. Life is too short not to have fun!
Thank you for sharing this. It's a wonderful reminder to me not to stop, but simply to cut way back in a flair. When I was diagnosed with Lupus 16 years ago, one person in my support group told me ,"If you are in flair, and you can chose to do only one thing that day, chose a little bit of exercise." I didn't listen the first time around, but I did the next. What a difference just a little bit of movement makes. I find deep water aquatics exercise helps the most when my hands and feet are full of pain and iced cold due to Reynauds.
I love swimming and gentle walking, The pool is so relaxing and gentle going at my own pace and its never crowded -and i go from the steam room to the pool then the jacuzzi, back in the pool, ending fir 5 mins in the sauna. I am usually exhausted after but it is a good feeling.
Walking can be tricky as i live on a hill so i have to be careful which way i go - easier up hill first then down hill to home. I love walking in the country, or igoing into the plantations - its so peaceful and i can loose myself and the greenery is good for the mind (research shows that green and green things uplift and ease depression). Also taking my granddaughter with me is even more special.
Hi i am shy and worry that you will not understand me. (I am foreigner ) , but I will try..
I love walking !!! I live in Scotland (just on the end of land.)-. bonny views and plenty space
I walk a lot with my dog. When is my good day we walk over 10 mils. I like swimming but I found that water is too could for me.:/ Now when i go to the swimming pool with my daughter , she swims and I block jacuzzi
Before Lupus, I was a long distance runner, a backpacker and generally an athletic, outdoors girl. I am now highly sun sensitive and have arthralgia. So, I've migrated into the indoor pool at our local community center. I find swimming laps a bit monotonous, so I've joined the aqua fitness class. The aqua fitness is gentle on my joints, yet challenging to my cardiovascular system. I do a combination shallow water and deep water class, though when I'm starting a flair, the deep water, which is done with an aqua belt on, is better for my feet. If it weren't for the aqua fitness, I wouldn't be doing much of anything as the pain in my feet and hands is not great. I also have Reynaud's syndrome, and the aqua fitness helps with that as it seems to improve circulation in my hands, feet and ankles. The "bite" of the water feeling cold is a feeling that passes in the first five minutes.
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.... and that can't be bad. I am a great follower of yoga - body, mind and spirit and do two classes a week. My instructor is very supportive. 
... x
