How regularly do you exercise?: - LUPUS UK
I find exercising helps more than anything! I exercise about 3 x week & will increase in time. I exercise in a flare too as I find I feel better after. I find recovery the next 2 days after quite stiff & painful but i do an intense form of exercise, soon as I train again I feel better. I have lupus & quite bad fibro
Before I became unwell due to lupus I was a cyclist , runner , hill climber and gym junkie so maintaining some level of fitness is really important to me and I miss my pre lupus lifestyle SO much . I do what I can , when I can and try to push myself to my limits but obviously I have had to greatly lower my standards and expectations of myself .. Being the best you can but respecting and acknowledging the impact and severity of lupus is a balance I'm trying to achieve .. Not always an easy task
Can I ask what sort of excercise you both do or would recommend?
I swim 6 days a week and swim a mile a day at out pool that is 64 lengths. I have done this for 30 years when I got a new Lupus Consultant and I asked if there was anything I could do to help myself. He said swim. I started off having to be chair lowered into the pool and managed 1length and just progressed from there. Have just has to leard backstroke after major spine surgery - you can't do breast stroke with two 8" Titanium rods in your back - as I found out the first day back in the pool. I find the first 30 are painful and then after that all my joints loosen up and it gets easier and no pain. Fandabydozie!!
Hats off to you Hazel!!!!
You have more courage than me....whenever I try to swim, I get severe cramp in my leg muscles (I was a dancer from 7-16 years of age, and then an athlete, so muscles are well developed, but not used enough these days!)
The worst time for me (and for lots of us) is first thing after waking.....so I lie in the bed with covers off, and gradually exercise arms and legs for about 5-10 mins each. When I'm able to sit up, I circle each shoulder and gently rotate my neck because I have an old injury there. It is painful to do these exercises, but I'm concerned about my limbs seizing up if I don't keep them moving.
You have encouraged me to keep this up!
Hi, Sorry about your problems. Re- cramp, the doctor and the life guards told me to drink Diet Tonic water for the Quinine (I am on maxi. amount of Plaquinel ) and to drink plenty of water as well. That is why you see 'real' swimmers have bottles by their lane so they can 'top up'. MOST pools have a dissabled Warm water day and you can be lowered into the pool and do excersises in the water, it is not quite as painful. I have also started going to AquaJog at our pool, you have a float belt on and do what is says. Excersises for arms Legs and the rest. It is the day after that when I feel 'I have done it!) At 65 years Young, I have learnt to only Half listen to my body as 'it' can be a coward and bone idle at times!!
The best of Luck with all you try, it is the Trying that keeps me going - I am soooo stubborn ! xx
I wish that I could do some form of exercise. Just taking the children to school puts me in bed for most of the day.
I feel as if i'd better apologise in advance, cause this is going to be a longish post: it's just that finding a way to exercise has meant so much to me over the years....and maybe my story will be useful to some of you, whatever point you're at in life
i am hypermobile, so exercise has always been a problem due to the extra wear & tear hypermobility creates in joints & soft tissues. Combined with my SLE/MCTD aches & pains etc, these conditions rather typically narrowed down my exercise choices early on in life. Also, i have always been prone to vertigo, which flares up if i "jig" about, so no aerobics etc for me.
Well, PE at school was a nightmare but i did my best to join in, although i felt sure teachers and other students thought i was a hypochondriac inventing aches and pains. A bad accident falling on my head at 7 permanently damaged my neck, and set me up for trouble lifelong throughout my spine. But as a young woman i found swimming, walking and yoga the best exercises for what seemed to me my body's strange likes and dislikes. What i didn't realise, was that the "exercise" involved in my early career as a gardening horticulturist would aggravate all my pain issues so badly that i'd have to give up professional physical activity to go over to office work instead on the nursery. But even that involved a lot of bending over light boxes and drawing boards, which my damaged neck really didn't like. Then, in the early '80s, i learned the alexander technique, and that postural training certainly made gentle light exercise much more possible again. but physio exercises were all pretty much useless, as were all Rxs from GP & countless neurologists etc.
only radical treatment in the 1990s (pain specialist"s denervations of facet joints) helped to numb my spine pain, and after that i was able to gradually build up the practice of a brief daily routine of gentle yoga-based stretching exercises. Meanwhile i'd discovered pilates and that gentle stretching exercise routine began to run into 30 minutes most mornings if poss. Then i became bold enough to try tai chi, which i loved, but it brought on the vertigo! in 2009 my gp referred me for NHS physio pelvic floor exercise training: and even with all the pilates etc i'd done by then, that lovely young physio taught me A LOT! i'd recommend that to anyone especially as perimenopause begins, if not before.
i am nearly 59 now. and basically, i continue to try to listen to my body: it is telling me these days that gentle stretching excercise in the early morning is best, but not necessarily daily....just as and when. But over the past 10 years I feel sure my anti-inflammation diet & supplements have made any exercise more possible for me, and also, more recently, the "miracle" of finally being diagnosed with what turns out to have been lifelong systemic lupus has meant that i could discover how daily plaquenil 400mg, for over a year now, would pretty much take the edge off aches & pains, all over my body: making my gentle exercise routine even more pleasurable!
to me, exercise helps my body, but also it cheers me up, especially when i feel low, as does any sort of meditation and mindfulness. you can probably tell: i don't tend to stick to the rules: instead i have spent my life gathering tips from many directions, and cobbling them together into ways of excercising that work for me. Unfortunately, although i have taken great care of my feet all these years, mega feet problems now make weight bearing exercise a bad option for me, but i still manage to do a bit.....and i know i will always somehow find a way to take what exercise i can, come hell or high water!
Having read about exercise for many years, the 2 books that have helped me most are:
'Pilates for People in Pain - a physiotherapy approach'
by Claire Sanderson grad dip phys MCSP
(available from her direct: claire@hemingfordphysio.co.uk)
'Explain Pain'
by Butler & Moseley
from NoiGroup Publications in Australia at the Neuro Orthoaedic Institute
(available online: noigroup.com)
I go to the gym twice a week. Its referral from your GP. Its a lovely session,has got me out of the house,made new friends BUT most of all has made a HUGE difference to my joints and mobility.
We have a personal trainer with us at all times and your session is built around your personal capabilities.
Go ask your GP about a referral,then contact your council re your nearest centre. Wish I'd done it sooner! 
before i got Lupus I used to be able to swim 40 lengths and walked for miles as I didn't have a car. Since however my fitness level has decreased dramatically. I can manage a few lengths of the swimming pool but find the water is too cold.
I do try to walk everyday when i am not having a flare. Even if it's just to the local shop. When having a flare I can just manage to walk to the toilet.
I wish I could exercise more, wouldn't mind trying yoga. Have the ocassional go on the wii fit.
They do clubs for the "young at heart" qhite often think of trying that lol
I do not know where you live or if you have transpost, but most places with pools (some in schools) have a WARM water day for dissabled. There is help available for wheelchairs and helpers, do make enquiries as swimming I have found is the best all round excercise and so the most enjoyable. Or as you say the 'young at heart' ask your doctor about that as you can be 'reffered' and it does not cost you anything for 12 weeks so it gives you chance to see if it is of help. Good luck.xx
Hazel,
I had no idea about either of your comments. i will look into it, Thank you so much
Thanks very much for this tip Hazel....I will ask GP next appt. I have tended to avoid public swimming because of the cold water and the screaming youngsters!!!!
You do not have to see the doctor, just ask to see either the Health advisor or the nurse, they should be able to do it. They just weigh you and ask a few questions. Just tell them it will benefit your health/Lupus.
See my comments below to save time. Good luck Girls.xx
I walk my dog several times daily. And I play golf twice weekly or more if possible.
My joint pain is mainly in my wrist's,finger's and toe's. I find that once I get into
the exercise my concentration gets better and I relax,hense taking my mind off the pain.
@ChrisJ I do something called crossfit. I've been told I'm crazy but honestly it's the best thing for me. Of course sometimes Im so tired, in so much pain but I do what I can & 99% of the time I feel better after the class. I then have energy to go home chores & deal with kids. I did alot of research onto this crossfit lifestyle with SLE & so far it's done me good. As a sports therapist too I'm aware of all my limitations & when to slow down.
Kidney, heart, lung and liver exercises in chi gong [like tai chi] have helped me nourish and strengthen these organs which had been adversely affected by sle. These organs are so much better than they were.The simple but potent standing chi gong, gives steadiness and deep relaxation to me and it builds up my general stamina.
Daily along with stretching in yoga and walks in the fresh air all helps me have a better quality of life, mentally, emotionally and physically, while facing the challenges of living with chronic illness. If I don't do any exercise I notice how much I struggle. [When I was very debilitated could do chi gong while sitting in a chair, or standing holding onto a chair when was wobbly, started at 2mins a day, slowly built up.]
It feels good to be doing something every day to build up my health and the benefits for me have definitely added up. Rolling the yoga matt at home on the lounge carpet in winter in front of the fire and after a hot shower means its do-able for me. Good luck in finding what works for you.
i struggle massivly with my weight. always have. and my pain management is awful. fibromyalgia pain really kicks my butt!!
but i walk my dogs twice a day. but ive always loved swimming- which ive found is the best way to relax and excersise if you have lupus or fibro.
I try and walk most days anywhere from 'to the local shop upto an hour or so' depending how i'm feeling. I would like to go to the gym but don't know what i'll manage and can't afford to keep trying different things. I have thought about swimming, but again it comes down to cost and at least walking is free
Get a 'Referal' from your doctor then you do NOT PAY for the 12 week course and gives you chance to see if any of them suits you, you allways get a Gym trainer to see what you can and can not do. Good Luck.xx
i walk to work in the morning and try to walk home most days to then walk the dogs it helps but sometimes the breathlessness is really bad so its not to easy to do but i'v always loved walking and its free
Reading these comments has been really helpful to me Still new with diagnosis of SLE, so trying out what works and what doesn't with exercise. Swimming is a great help for me also.
Always interested in different forms of exercise that might benefit this condition, and was wondering if anyone has ever tried any BIKRAM YOGA (hot yoga) and if so, what benefits they found for their lupus??
Nearly 60, male and still whitewater kayak -- albeit it is getting hard to keep it up. Walk alot (in my job as well). Diagnosed with SLE/RA in Y2K - had to give up Triathlons but still firmly believe that a positive attitude has as much effect as some of the meds.
Added a bit of Tai Chi and a tad of yoga when time allows.
@polar-bear
I use to do Bikram but after a while I became heat intolerant. Quite impossible for me to even enter the room now. If you are ok with heat & humidity give it a try. But take it easy cause Bikram is exhausting. Feels great on the joints though
thanks for the reply! I just posted it on the questions forum because I couldn't find my way back to this post to see if anyone had replied!! Had been wondering about the heat thing...I guess I will have to try it and find out...
I have to agree with some of the people here, i to find excersise helps me cope with the pains and tiredness i get from the SLE, i just push myself to go and usually go about 5/6 times a week but ensure that i have combination of classes that are are high in intensity and low to so my body can recover. I am even thinking of training as a personal trainer just to motivate and encourage other people with chronic illnesses to try and excersis if anthing for that hour or so you can try and forget you have Lupus
No matter how bad the day is I still do the most basic of exercises, it hurts and can push the pain up into the 8-9 range but the benefit is worth it. Sometimes I can only manage finger, hand & wrist ones but I still feel I am beating the Wolf.
Until I was 42 I used to run 5 miles every day, worked full-time and only needed 4 hours sleep a night.
Every day seems a challenge & for a couple of years I gave up and virtually spent all my time in bed. Dragging myself along the floor to the bathroom, often falling asleep there next to the warmth of the radiator covered with towels.
Not now. No matter how small the battle I will win at least one each day !!
I can't excercise as i'm bed bound, five years now that i have been stuck in my bedroom, no tv, just my dab radio. No visitors, no family but i still look after a mentally disabled lady and i don't know how i have done it, i'm at my wits end now. Five years ago i was an avid mountain climber and dancer. I cry most days but i have to hide it from my disabled lady. My body is full of dried skin and is black, we only have a bath and it's impossible for me to have one. Two yrs back an occupational therapist came, she tried to put an electric seat in the bath but the toilet juts out so badly in front of the bath that there is no room to try and get in the bath. The bathroom has space of 1ft by 3ft! The therapist left me with a pick me up and a tiny table. Life is a dark tunnel with no light, i'm in the north west of uk.
Chronic fractures resulted from years of prednisone, so that excessive walking has caused foot fractures, etc... real "exercise" would be painful and harmful.
I'm a skilled manual work and find that after an 8 hour day 5 days a week I,m to tired to exercise, spend most of Sat & Sun recovering for the next weeks work load.
ERM, lifting my spoon from ice cream?
I walk, yoga, stretch, breathing, meditative breathing... I know that's not much moving but I use it during my tough times just like my other tools.
Everyday,even if only 20 min. ..when able walk as much as I can....mostly my hips and shoulder bones affected ...when it flares I can hardly do anything...so try and keep muscles as strong as poss
I try to stay as active as I can. Not always easy!
I grow most of my own fruit and veg so potter around in the garden, if not too sunny, for about 30 minutes each day.
Also because of my clotting issues I do a 'circut' of my indoors - up and down the stairs and around some rooms - every 90 minutes or so.
I have a treadmill and try to do at least 10 minutes each day but I do find it hard to do.
Always get more tired as the day goes on and then I have to do cooking- I am lactose intolerant so I have to cook everything from scratch!- plus the laundry and the house work and then cooking for the hubby and kids.
I feel tired just writing about it!
I exercise 3 times per week, there is nothing better, it helps both physically and mentally, even if u feel tired and don't want to go, make yourself, I promise you will feel much better afterwards, get those endorphins going, they make you feel happy!
I think also what exexvise you chose depends on you but try and do something you enjoy, something that helps, you may even find something new. I hated the gym but now it's mainly the only thing I can do so I've learnt to enjoy it, it's the after feeling that makes me go! I also power walk, it's quite invigorating and I've discovered so many hidden streets etc in my village ☺
I'm recently diagnosed and the pelvic area pain is really bad when walking, but I force myself out every day ( having a wistful dog helps) . I'm trying to keep up some muscle tone with isometric/ballet as the barre type flexing ( no muscle pain). While sitting, I can buttock clench with no pain, so do that. The biggest blow has been the finger pain, and as a hand knitwear designer I was almost in despair, but I have found ways around this - can't do anything fine or delicate, but other things I can. I'm determined to keep the fingers and hands going, even with Reynaud's on top, and knitting is a very soothing meditative activity.
