March's Topic of the Month - Exercise (We want to hear your tips and experiences)

March's Topic of the Month - Exercise (We want to hear your tips and experiences)

We will be continuing our ‘Topic of the Month’ in March by discussing, ‘Exercise’

Exercise is an important part of taking care of yourself and your wellbeing. Just like everyone else, where possible, people with lupus need to exercise regularly or engage in some kind of movement.

We’d really love to hear if you have any tips for exercising with lupus. Please share your experiences of starting to exercise and how you progressed to where you are now. If you experienced pain or difficulty exercising, what did you do about it? Did you receive any expert help when you were starting out? How has exercise affected your lupus?

We would like to hear all of your tips and experiences and we’ll compile them at the end of the month for an article. Please share in the comments section below, or email paul@lupusuk.org.uk

The article itself will be posted on the LUPUS UK Blog at lupusuk.org.uk/category/blog/

All submissions will be anonymised.

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  • A few years ago I started by doing some hydrotherapy prescribed by my GP ( I had to ask). At this I realised that most doing hydrotherapy were much more disabled than me so that encouraged me to go swimming at my local pool when I felt well enough. After about 9 months of swimming (sometimes it was only once a month other times once a week) I started doing an Aquacise class ... at first I did not manage the class every week but slowly I pushed myself and I now go regularly most weeks. It's a hour class and I have been doing that for 2-3 years, I'm even trying to now go to aqua class twice a week. Aqua is good because the water supports your joints.

    After about 2 years doing the aqua I got a gym membership card as for me that works out the cheepest and it encourages me to go. I mainly use it for swimming and the aqua class which I try to do every week. I do sometimes go to the gym as well. In the gym itself I usually do 30 to 40 mins and I just walk fairly slowly on a treadmill, but you can put the treadmill on an incline which then gets your heart rate up, so gives you a cardio workout without too much impact on your joints. Everyone at the gym is friendly and helpfull, and I always feel a sense of achievement after going

    With my gym member card I can also do other classes that they offer so I have tried a "Les Mills Bodybalance" class ... It is a mix of Yoga, Tai Chi and a bit of Pilates.... I have to be on good days with my health to go to that at the moment, but it's a new years resolution to try and get so I go to that regularly as well. It's only a 45 min class which is plenty for me and I usually do ache after it as you stretch your body in the class.

    Doing exercise does give me some extra fatigue and aches and pains but as I get these symptoms anyway I'd rather be tired and in pain and have the reason of exercise for it. I think the key is to build up slowly. For me it's taken years but I now do at least 2 lots of exercise a week and I still challenge myself to do a bit more.

  • Hi fabwheelie,

    Thank you so much for sharing your experiences. It's great that you've found some exercises that you enjoy and work well for you. When you initially had the hydrotherapy prescribed by your GP, was that for a certain amount of time?

    You mention that you get some extra fatigue from exercise. Is this just while you are recovering from exercise? How have your general energy levels been affected? Do you think that exercise helps you to manage your lupus better?

  • yes I had 6 sessions, one a week, of hydrotherapy prescribed. It was a good way to start doing some sort of exercise as I not done anything since getting ill and having a diagnosis. It just involved doing movement in the water under supervision. They even had hoists for people in wheelchairs to make to accessible to everyone. I think I may have been able to get a further 6 sessions if I had wanted it but I decided to try normal swim sessions on my own instead

    I do get worse fatigue after I've exercised. I also get a little bit more pain too. Extra pain and fatigue was worse when I first started exercising but even now I still get some extra ... later that day and usually the next day too.

    However I normally get worsening of fatigue, aches and pains after doing any activity (eg shopping, light gardening) so I accept slight worsening due to exercise. I tend to do one or two activities a day and try to pace myself throught a week, so for example I may do very little other than go swimming one day, the next day rest, the next day shopping, the nest day rest, the next day aqua class etc

    Since doing regular exercise my overall health is better in that I seem to remain more stable and get less bad flare ups. Also after I've exercised I sleep better that night, and it has really helped my mental health since I've exercised ... In was very "sporty" when young and coming to terms with not being able to do what I used to do was very hard for me when I first was diagnosed ... now at least i feel I can do "something" to help stay as "fit as I can be" and to try keep my weight under control. It also gives me a routine of things I can do with my time as I am not well enough to work

    I'd also rather have fatigue and pain and be able to say "well you did go to aqua/ for a swim/ to the gym" than just have fatigue and aches due to my Lupus and no other reason

  • Thank you so much for sharing fabwheelie. It's great to hear the details of your experiences and I'm sure it will be helpful for others to read.

  • When I am exhausted and hurting, the last thing I want to think about is exercising. I know it is important though so what I have found works for me is to have a friend come over and encourage me to go for a walk with her. I find that taking a hot shower before and after helps somewhat with the pain and achy bones and joints so it gives me a little energy to move. Once we are out walking I can actually feel a little refreshed and gain some energy. Sometimes it takes every ounce of energy and a friends encouraging and kind words to keep me going and help push me because on my own I would not always have the will and desire to exercise. I have a treadmill I use when the weather is bad or my eyes are just too sensitive for outside. I can watch tv while I walk so it kind of distracts me from focusing too much on my fatigue and pain. I take pain reliever and most times need a nap after walking because it does tire me out. Some days it really does help me relax and makes me less stressed. It also gives me energy to get going on a fun project.

  • Hi ac489, this is a great tip, thanks for sharing. It must be really nice to have someone so encouraging to help you! About how long will you walk for?

  • Usually about thirty to forty minutes. Some days I am able to walk up to about an hour or a bit more but not too often as I fear I will pass out when I try to push myself too much. I had to learn to know my limits because I will end up in bed for a couple of days exhausted and hurting if I try to push myself too much. Its all about learning to pace yourself and listening to your body as far as time limits on exercising. Actually, you learn to pace yourself and set limits not only with exercise but with everything you do. On good days I have to remember to take it easy and not over do things, then I am able to have more good days that way.

  • Being too sore to formally excercise as is the case for so many of us, I just keep active. I have an app that tells me to stand up, and counts my steps etc, I tend to obey it! I don't walk too far in any one direction with the knowlege I'll have to retrace my steps so rather, I just keep moving. For example, if I'm reading I'll get up after 15 minutes and perhaps sweep the floor or whatever is useful and excercises muscles , promotes circulation , and prevents stiffness. As well, I can sleep for longer intervals at night if my body has been 'stretched '.

  • Hi Penelope-Mary,

    Thanks for sharing this. What's the name of the app that you use?

    When you say 'stretched', do you mean the kinds of exercises that you've described or do you have a set of stretches you do before bed?

  • Hi George,

    I have an Apple Watch which vibrates with a ' Stand Up' and 'Move around', it tracks your steps, heart beat and calorie burn. Quite bossy really 😆. There's a cheaper option 'Fitbit' which you also wear around your wrist.

    By stretch I just meant, literally stretching muscles, using your joints etc so when you do lie down it feels a relief and you are less likely to have restless legs and aches . Probably a bit anecdotal but it has been proven that to move every 15-30 minutes promotes health more than a workout.

    May I add, this forum means a lot to me. I have a large friendly family but here it's a safe place to share and be understood, THANKYOU for including me from the other side of the world. My husband shares my sentiment, he's a surgeon and appreciates the need to belong to a community such as this.

    Gratefully yours

    Penelope-Mary.

    🌼

  • Thanks for the tips Penelope-Mary. They'll be helpful for everyone else!

    George

  • Pleasure, George 👍🏼

  • Pace is a key word when it comes to exercise for me. In the past I exerted too much energy to the point where it didn't feel beneficial and became counter-productive as I dreaded ever doing exercise or activity as I like to call it. In my head 'exercise' sounds like a penalty.

    8 weeks after undergoing a successful kidney transplant 15 months ago I kicked off my activity by walking round the park incorporating an app on my smartphone that counted the amount of steps I'd accumulated and then I built on it each time. Ensuring to build up my pace and gradually increase my heart rate.

    This led to swimming twice a week to then joining in team and competitive sport which was rounders and badminton every now and again. Increased activity is good for the mind and I sleep miles better after partaking in any form of activity that gets my heart pumping.

    I've recently signed up for a roller skating course which started this week and I enjoy the challenge of learning new tricks and ultimately staying upright and keeping my joints in tact.

    I feel fortunate to be able to do so much more now as the symptoms of SLE have been such an obstacle in the past and could possibly be in my future; but I'm focusing on what I can do today.

    Losing weight as been a big factor in my ability to get to the level of activity I do now. But most of all its down to pacing and listening to your own body.

    Thank you

  • Sounds like you're quite active indeed! I'm really pleased that you're able to engage in activities and enjoy them.

    You mention that getting to where you are now is mostly down to pacing. How do you monitor when you're doing too much? What do you do if you feel you are doing too much?

  • Ultimately my body, aches and pains will be the dictator of that but I joined a slimming club in order to lose weight so that I could get on the kidney transplant waiting list.

    Although I've reached a comfortable weight and now classed in the healthy weight range; I still attend the club and love incorporating healthy eating with a healthy living. I complete a fit log which just records my daily activity whether it's planned or unplanned, and the frequency; intensity and time.

    This has been a very useful tool for me. If ever I feel I'm doing too much I rest or swim at a very leisurely pace. As long as I moving I feel good about it.

  • Thanks for replying charm81. I'm glad that you've found keeping a fit log helpful for you. I'm sure others will find this tip helpful too.

    George

  • Hi Paul,

    I have lost a lot of my mobility so cannot walk more than a few minutes. However, I swim and go aqua three times a week. I have been doing this for 6 years now, since diagnosis of SLE/polymyositis. I have lost my muscle strength in my legs 3-4 times now, in this period, through flares. It is the swimming and aqua that has helped me build it up again. It is a like a miracle that I manage to rebuild this strength. I takes a year or longer, but I keep persisting. The Dr's are very pleased with my determination and persistence. When I swim, I feel happy, pain free and "normal" in the water. It is an amazing feeling. I can squat, run and do exercises I cannot do on land, as I am supported by the water. My exercise puts a BIG smile on my face and keeps me active, social and most importantly, mobile. It is really the only exercise I can do/manage, but it is good enough for me! I would be lost without it. It gets me out of the house, and keeps me very positive. There are many other people there, who are now friends of mine, with health problems/challenges like stroke, arthritis, MS, who do it for similar reasons. We are definitely not alone! When swimming I feel elated because I can still do a sport I love (half the distance I used to do prior to SLE but good enough for me). Hope this is of help.

    Renu x

  • Hi Renu,

    I'm so pleased that you can enjoy swimming. Thanks for sharing your experiences. Do you find that there are times that you don't want to go swimming? If so, how do you keep yourself determined during those periods?

  • Hi George,

    I do tend to stick to my three day swimming routine as I enjoy it and can see the positive benefits. If I did not do it, I would be very inactive and immobile as my walking is so slow, that it wouldn't count as exercise. Unless I am in a lot of pain or poorly with cold, infection etc, I will continue to swim. The only times I have stopped are following 4 surgeries in last couple of years when I needed to rest and recuperate. I listen to my body, and if there are exercises I struggle to do in the water, I will vary them, so that they are not uncomfortable for me. I only swim the strokes my body can cope with and do not overdo it. I try and swim 20 minutes and then stop. That works well for me. I like going for the social element as well. I have made good friends so if I don't feel like going on a particular day, I might push myself to go but I always feel the benefit afterwards. My pool is only a 5 minutes drive, so it doesn't take much effort to get there. Sometimes when I have not felt up to going, I have just had a break and rested and not beaten myself up for not going. I tend to try and have a half an hour nap after my exercise if I can, to feel rested and to preserve my energy levels for the rest of the day.

    Renu

  • Thanks for the tips Renu. I'm glad that you're able to manage yourself well. A few people have mentioned the social element of exercise as a motivation, so I'm pleased you've been able to make some friends out of swimming too.

    George

  • I like to walk every day, preferably near trees - more oxygen, good for a hug and always improves my mood. There's no target here, just get out there.

    I bought a mini trampoline and just used it on good days to start with. It folds up and I can have it near the television or radio or take it outside. I find that about 10 minutes is a good way to wake the body up. I think of it as helping circulation and lymph drainage. I do low bounces and mix it up with a soft jog and free style arms so nothing gets strained. I can pull the curtains so it does n't scare the neighbours! Again, no target so I can't "fail".

    Big news - a few days ago I went swimming at the leisure centre for the first time since diagnosis about five years ago. I picked a very quiet time and it was just fabulous to feel the warm water like silk over my arms and feel supported in the water. I found myself racing another lady who was lane swimming and that was not a good thing as I am too competitive by nature, so I set a rule of no up and downs and touching ends and just pootled around in the middle finding sunbeams in the water.

    I never thought I'd see the inside of a gym again but have just finished a three part induction. I was very anxious about it but my lovely instructor (good for the hormones!) gave me far more than the allotted time and devised three very low impact programmes to choose from, so I can avoid a problematic area if necessary. I let him know about lupus from the very beginning and gave him a Lupus UK bookmark. Feel very lucky.

    Onwards and upwards, but build gently. Very gently!

  • Way to go PeaJay. It's great to hear that you've started swimming and that you're going to the gym.

    It sounds like you have a good mindset regarding exercise. Can you explain how you developed the thinking behind not setting a goal for walking or trampolining, please? I think it might be encouraging to hear.

    What kind of exercises are included in your gym programmes?

    George

  • Ha! Yes. I did a lot of sport growing up, had a lot of success and got used to pushing myself, mind over body, in some activities such as county cross country running. I realised the stress this caused me was not good but I transferred this pushing myself attitude to my teaching career and eventually.... well, eventually lupus found a way to stop me. Hence the rethink! I have the feeling that lots of people with lupus are great strivers. So perhaps we need to be pleased with any exercise we can achieve and not bash ourselves with target setting.

    Re: the exercise programmes: I asked for all muscle groups to be included but at very low reps and weights. My instructor suggested that in one programme the focus is on the upper body and in the second it's on the lower body. So alternating these two over two visits gives me time to recover one half. In addition my third programme is for not so good days to do anything I feel I can manage. I'm literally on the lowest weights and nothing more than ten minutes duration per exercise. Total programme about 45 minutes. And no running at all. Warm ups are on pedals and warm down with stretches.

    Thank you, George, this theme is really filling a gap. I've learnt more from this site about lupus than I have ever done from health professionals.

  • Thanks for your response PeaJay. I'm sure that it will be encouraging for others who are reading.

    I hope that the gym goes well. Do you have any particular goals that you'd like to reach?

    George

  • My goal is just to do the best for my body (and mind!) every day.

  • My illness hasn't stopped me doing the exercise that I was doing before, but I am finding that I have to be much more careful in what, and how much I do.

    What I find is that if I am feeling too tired to do my Monday exercise class with my girlfriends, then I shouldn't do it. If I do, it can completely wipe me out for the rest of the week.

    Even when I do feel up to it, I have to do it at my own pace because what I've noticed more than anything is that recovery time is much longer.

    Yoga really helps me...again at my own level. But, best is just going for a daily walk with my dog. Fresh air, someone to chat to and some exercise makes me feel great. Although, and I don't know if others have this problem...I sometimes get really sore feet, so too much walking isn't great either.

    I think the main thing on exercise is to listen to your body.

  • I'm glad that you're still able to do your usual exercises. How much more recovery time do you find yourself in need of? Does this vary?

    What sorts of classes do you do and how do you pace yourself within these classes to avoid overdoing it?

    George

  • Instead of my muscles aching for a day or so, they ache for about a week. No extra aches and pains after yoga.

    We have a personal trainer lady who comes and works with a group of us and does some cardio as well as specific parts of the body workout. She knows that I have a few issues and knows to let me do what I can. I tend to follow the exercise she is explaining with my own modifications. For example, if she is doing anything that might hurt my hips, lower back or shoulders... I just don't do those things and might do a some core exercises instead. If she is doing leg lunges...which stop me moving for a week....I'll do some too, but only baby ones and not so many.

    I think it's just about learning...sometimes from your mistakes...and just to listen to your body.

    Thanks George. I think this is a great topic.

  • I'm sorry to hear that's the case regarding recovery time, puffyface. It's great that the trainer is understanding. Thanks for your comments, they're helpful!

    George

  • Hi! It is so good to know that you directly ask people with Lupus :) before writing the article. Thank you!

    I've had Lupus for 15 years. My doctors never recommended to go to the gym or to lift weight, or any extreme sport. Before Lupus I used to walk, very much, play football, play basketball, volleyball. I stopped all this with my 1st flare, my joints were too swollen, and I was diagnosed with Lupus. However, when I was going through my 6th year of Lupus and I had been without flare for about 2 years and I was taking maintenance pills I started to go to the gym. Only walking, running, bike, and some light machines. I forgot about the machines and focused on cardio. It was good, I could exercise for two hours and it was fine. However it didn't last more than a year. I started to get more tired than you usually are with Lupus. I fall asleep while exercising. I was needing to rest more and more. After that, some years and some flares passed. And then I started to walk again but in the park, 30min to start with. Soft walk every day. And that was fine until last year that since the flare I had with Lupus Nephritis and haemolysis it's been very difficult for me to walk to the shop around the corner without getting very dizzy and short of breath.

    When I was a kid I used to ride my bike everywhere. I miss those days. Not possible now. Dizziness, extreme tiredness, joint pain and muscle pain make any exercise a real challenge. I'm 28 yo and 55Kg (Always kept between 49-60Kg) so it's not something related to: I'm old and overweight. No, it's Lupus. Even high heels are a difficult exercise, it's been 3 years without wearing high heels. All flat.

    Thanks for your time :) and good luck with the article :)

  • Hi Dalilatm,

    Thanks for your comment. I'm sorry that you've had a hard time exercising. I'm also sorry to hear that you now struggle to even get to the shops.

    Has your doctor said anything about being unable to walk very far? Are you receiving treatment for this?

    George

  • Thanks for your reply :) Yes, doctors were worried so they have been following to see exactly what could it be (The treatment I'm currently getting, another flare, virus, etc). As I just came out of a flare, a few months ago (Nephritis, anaemia, hemolysis, clog in the leg), I know that right now my body is recovering, slowly, but there it goes. Additionally, the changes on the dose of steroids have been affecting me, it makes me feel very dizzy.

    Cheers,

  • I used to be very active prior to what I consider to be my illness phase. Dance ,gymnastics etc. When I first crashed the arthritis pain and inflammation meant that exercise in water was the only way forward to keep muscle tone. But again this had to be built up as it can be exhausting afterwards. Since then Pilate's with an MS friend and getting a dog means I have to walk each day.

    Pacing is so important with what is planned for your day. If I want to do some gardening I don't walk so far the dog plays in the garden with me!

    Be prepared. Painkillers, antiinflammatories first.

    I am sad to say with all the professionals I have seen I have not had one word of advice regarding exercise. Since many of us have issues with circulation and weight maintenance I would think this lifestyle advice would be more forthcoming. Unfortunately I feel we are treated but not advised.

  • Hi Johare,

    It seems like getting a dog can be great motivation for activity. Has getting a dog helped you to enjoy walking a bit more?

    I'm sorry that you feel you haven't received enough advice about how to exercise regularly. The article should be full of great tips for that. But until then we've got a factsheet that you might like to read called 'LUPUS: Fatigue and your Lifestyle'. The sheet talks about the kinds of exercises that might be helpful for people with lupus. You can find this here: lupusuk.org.uk/wp-content/u...

    George

  • Thank you for the response. Yes I bought the dog for that reason. After a busy working life being at home, however, unwell initially, I was going mad alone and needed stimulation. Having to feed the dog, train her, walk her, made me get up and move. Originally I took a stick you can sit on and she could run around me if I found walking needed to be in stages. She has been a life saver. She also knows before I do when I will faint or if I am particularly unwell.

  • It sounds like your dog is a great companion. What is her name?

  • Enzo, an Italian Spinone, hence the name. Not much of a gun dog though!

  • The irony of having been a persistent non turn-out for PE at school, diagnosed with a chronic illness, I now find I really enjoy exercise. It helps me on so many levels. It's makes me feel more energetic and positive as well as keeping me physically in better shape. Prior to diagnosis I had taken up a more active lifestyle and had managed my first half marathon a week before I was diagnosed with an overlap of scleroderma and lupus. I got a bit scared and spooked by that and although I tried to keep exercising, a bit of wound licking took place and I got lazy (and fat!).

    This Christmas my brother got me a Fitbit (his not so subtle way of saying I needed to do something!). I find it strangely addictive as well as motivational. I often set up challenges with my friends to see who can cover the most steps in a week or in a day. I joined a fat club and have lost a bit of weight and have nearly finished working my way through the c25K app. I like to have goals - whether it is a parkrun or other bigger events. Im looking forward to doing the British 10K in the summer and reducing my time on last year. I also entered a half marathon in September. I hope I haven't bitten off too much!

    I like the C25K app because it is well structured and your progress is gradual but consistent. I have repeated days in the programme when I have felt I wasn't ready to progress. It's really important not to overdo it - as I learnt the hard way last year. I will continue with the C210K app when I have finished this one - I think I will have done it in just over a week. I love the fresh air and space to think when I'm plodding along. I even enjoy the elements when they are all being chucked down on me at once! (I'll not call it running!)

    I feel very fortunate to be as well as I am. I do have challenges like everyone does. If I am having a bad day it might be enough to go for a short walk and then have a cup of tea with a friend. I like to do weights at the gym as well as walking and jogging but sometimes I feel quite weak or have muscle aches that can interfere. on cold nights I can struggle with Raynauds and in the summer I need to remember my sunblock! I think it is early important to find something you really enjoy doing as well. It's easy to be scared to attempt any new exercise and if I am going to a new class I usually have a bit of a chat with the instructor beforehand. I love spinning but the instructor is usually happy enough for me to sit in the back row and take things at my own pace.

    I guess the key for me has been to build up my exercise a little bit at a time. If I don't manage to do as much one week, I try not to beat myself up about it. Pacing is important as is getting enough rest in between for recovery. I've also benefited from being in Slimming World. You can't outrun a bad diet. (Sorry!) Setting goals and entering events and little mini challenges between friends have all helped motivate me. And definitely finding something you enjoy.

  • Hi Shazzer1976,

    Thanks for your reply. It sounds like you're quite active. The couch25k app/ podcast is great and I'm really pleased that you've enjoyed it.

    For those who aren't aware of what the couch25k app is, here's an explanation.

    The NHS Couch25k app/ podcast gets you from the 'couch' to running 5k at a nice, easy pace. If you have a good routine you can finish the course in 9 weeks. However, there's no pressure to complete it in that time at all. You can download the podcast here: nhs.uk/Livewell/c25k/Pages/...

    How are you feeling about running 10k? What sorts of challenges have you done with your friends? Did you immediately enjoy running or did you have to persevere a bit?

    George

  • Initially I felt very self conscious being seen pi doors huffing and puffing along - especially when I finally got my first pair of running tights!

    I'm excited about the 10K. I did it last year and loved the friendly atmosphere - other runners and supporters were great. I want to improve my time. I'm feeling a lot better this year than last.

    The main challenges I have with my friends aren't that exciting. I use the Fitbit app to set up challenges with friends - the most steps in one week or in a day. I have also entered things like the Race for Life before.

  • Good luck with the 10K and improving on your time. Let us know how you get on.

  • I like to play table tennis as it is something I always enjoyed as a child and I like the challenge. I do this once a week for 2 hours when I am well enough. I also like to walk and living near the sea, I tend to go to the beach for walks away from the traffic fumes and where the air is fresh and I can expand my lungs without pain. I also like walking in the country and on the moors, but I find I must limit the exercise or I can easily 'over-do' it and feel rough the next day.

    I also like doing my garden - cutting the grass and weeding because again I am out in the fresh air with nature and hopefully keeping up my Vitamin D levels. The table tennis is indoors, so I feel I need to balance this with being outdoors. Doing the chores is exercise, too, so I change my activities as much as possible to keep me motivated and make sure I go in and out to the garden regularly as I feel being indoors too long affects me and I get the pain. I am electro-sensitive, so being on the move is important especially with more masts and 4G just having been introduced into my area.

  • That sounds great Cann. I'm glad that you've found something that you can enjoy. What do you like about table tennis so much? How do you feel it helps with your lupus?

    George

  • I think it is the exercise and competition that I like mainly. Seeing how the skill develops with practising. I enjoy doubles more than singles with the change of partners and opponents giving variety and challenge because everyone seems to play differently.

    The concentration helps with the pain, too, but I think it is the exercise and moving that controls the pain more because when I am still for too long the pain returns. I believe the immune system is kept 'occupied' if you like, when I am moving.

    I do have to watch I don't overdo it, though, as one day I walked to table tennis and whilst playing all my energy went and I felt bad the next day, but I had not been outside that day and I thought that I could get my vit. D dose walking down to play which is about one and a half miles.

  • I love playing table tennis but can't play much anymore because of pain in my wrists and hands. Playing table tennis is like going into another world because you focus on the game and returning the ball each time it comes back to you. You lose yourself in the game and forget about everything else you are going through. Great stress reliever

  • I get that problem, but wear a wrist band when I need to - it helps me a lot. Yes, I certainly lose myself whilst playing - revert to childhood I think, but can suffer afterwards and need some days to recover, but do my best to get there.

    I do hope you can get back to playing as you love it like I do!

    For a long time, I dreamt of getting back to playing and then saw a free session offered for the Fit4life scheme in the local paper.

    I stayed at that venue for a while, but got too expensive and they wanted players to get into the league - didn't understand why I couldn't do that with my health problems as they said I looked well.

    I then found a club I could play for fun - no pressure and for complete enjoyment with others like me or similar health issues.

  • So glad you are able to play with no pressure. Being limited to how long you can practice and play will only add stress if you are in a league. I used to be a lot more active but have now learned to be thankful for what I can still do and not focus on what I am not able to do anymore.

  • Yes, the best way - we all get to know our own bodies and have to listen to them or we suffer.

  • I'm quite active, going to the gym to do classes or cardio work about 4 times a week. I enjoy bike rides and walks too but often feel v tired afterwards. I feel like I'm constantly having a battle with myself about whether to crack on and exercise or rest if I'm not feeling great. On one hand I think exercise can work wonders to get endorphins pumping and to keep my body in good shape but on the other hand yes I ache afterwards and feel tired! If I didn't exercise as much then I'd probably still have aches and be tired...I don't know what the correct answer is at times! I enjoy exercising and the achievement is good once a workout is complete but I do question whether I should be doing as much as I do!

  • Hi Dancingc21,

    Thank you so much for sharing your experiences. I think that you raise a really good question about knowing exactly what is the right amount of exercise to do. This will obviously change significantly between when you are in a flare and when you are relatively well. It is important to listen to your body and not push yourself too hard. Are you aware of any warning signs when you have done too much?

  • Thanks Paul. I think when I've overdone it I feel pretty exhausted (fatigue) and I get aches in my muscles and joints. A feeling of very heavy arms and legs is another way to describe it probably. I think when I'm feeling like this my emotional state also waivers and I can't become a bit tearful/low.

  • Thank you for explaining Dancingc21.

  • Hi Folks,

    I have found this all very helpful. I find excercise increasingly difficult due to dire fatigue and constant chronic pain.

    I have been trying to move more but my only actual exercise of the day is with my dog for a short twenty minute walk. After that I am in bed for up to three hours but I am still determined to at least keep that up.

    One thing I found totally infuriating was that attempting any tidying in the house just brings the pain on and due to the pain I can't focus on what I am doing so get demoralised and give up. Living in a disorganised mess just makes you feel even worse so you become depressed and fatalistic about it all. You feel you will never ever get out of it.

    But last week I had a breakthrough!!!!

    I have only a CD player, not an I pod but I put it in my pocket, plugged in a book CD to my ears and the result was remarkable. As my mind was listening to the story on the CD it forgot to remind me of how bad my discomfort and pain was while I was tidying and I managed to sort out a whole room.

    I also have been trying it with music and that is good too but the stories are better as your brain is more involved in following it.

    It has really cheered me as I see a window now towards hopeful improvement.

    I like the idea too of the treadmill and watching TV at the same time on rainy horrible days. Same effect really of occupying your brain so being much less aware of the discomfort.

    Great topic Paul!!

  • I love a good audiobook. I often plug myself in and go for a good walk. I get engrossed in the book and forget how far I have walked! I don't concentrate as well when I'm running though - a good playlist of motivational tunes helps in that case! Keep at it. Your energy will improve - providing you're not in a flare. I've found I am a lot less achy and stiff than this time last year.

  • Thank you for sharing your experiences cuttysark. Having an interesting distraction when you are being active is a good idea. Have you tried it when walking to see if it helps you go for longer?

  • I only ever walk with the dog Paul , and she is a young collie who likes to have me all to herself !

    We are lucky to live at the coast so I walk along the beach mostly and love to hear the waves lapping and all the chatter of the wading birds at the mouth of the river.

    But I will try music too , anthing to courage exercise is so good for us!

  • How lovely. What is your dog's name?

    If you do try walking to music, let us know how you get on.

  • Encouraging to hear your experiences with audio books and exercise Shazzer! But you are so right not to push yourself in a flare, I am the worlds worst at bashing on when I feel a little better and then undo all the good.

    Little and often!

  • Really interesting to read everyone's replies. And as expected, we are all very different, as are our symptoms. I was diagnosed in October 2013 and had had a hip arthroscopy earlier that year. So I had gone from running (3 half marathons and 10Ks) and keeping myself fit, to being too unwell to do anything. I couldn't make it through a normal day let alone exercise. My fatigue has been awful. I started Pilates once a week at my Rheumatlogist's recommendation in March 2014 and I love it. Once I started to feel the benefits of the hydroxychloroquine and iron supplements I started to walk with my family too, at weekends. Last summer we walked up Snowdon. My three children put me to shame, aged 11,10 & 7, they made it look easy. I, on the other hand suffered, the last 2 miles I cried non stop, my osteoarthritis in my hips and knees was so painful. Every step was felt. But I did it and was pleased I had pushed myself. I was useless the next day - could hardly move and was shattered for days but I felt I had accomplished something. I might never run again but I had gone up Snowdon. Might not ever be able to that again either, as my arthritis gets worse. I had a course of physio last year and am just starting hydrotherapy for my knees/hips/back. I have managed 6 gym sessions now too but I hardly do anything. I can't run and I can't row - Orthopeadic surgeon said they are not good for me. I like the recumbent bike. But some weeks I just can't do the gym. It's too much. My body needs the rest. So it is very much, a day by day, week by week, thing for me. I find it very frustrating at times. I am 41 and a mum to 3 children and I wish I had more energy for everyone's sakes and I wish my hips/knees didn't hold me back so much. I need a rest or nap most days to survive. Weight is more of an issue as I can't rely on the exercise to burn the excess calories. BUT on the other hand I am very fortunate. I am here. My lupus hasn't attached my internal organs. I have a lot to be thankful for. I will continue to push myself on my good days, because I am a very stubborn and determined person.

  • Hi Wendy39,

    Thank you so much for sharing your experiences. Congratulations on managing to go up Snowdon, that's quite an achievement!

    It's great that you are able to still do some exercise when you are feeling well enough and that with help from your medical team you know which exercises are not good for you.

  • I was diagnosed with lupus nephritis 111 in 2014 and after a wobbly ride through mycophenolate and azathioprine, had two infusions of rituximab, the last one being on Feb 19 th. I am now beginning to feel some return of energy and am trying to institute a programme of exercise - attempting swimming on Day 1, Tai Chi on Day 2 and a walk on Day 3. I'm also doing Tibetan Healing Sounds, though I'm not sure you would could count these as exercise.

    Of these, I am finding an early morning swim the most beneficial. It has energised me for the whole day. Brisk walks by the sea have also been good, but stumbling round busy streets have not. Interestingly the Tai Chi breathings I have been doing ( taking care to be gentle and grounded,) I have found absolutely exhausting and appear to have pushed me into a lupus gloom. ( I have had this experience in the past when attempting the Tai Chi form, I have actually been sick ). Strange. The healing sounds I find steadying, but in what feels like a longer term strengthening process. I'm also careful only to do a limited amount of these ( limited by my intuition, that is) as I'm not really sure what I'm doing with them.

    Hope this is of interest and use,

    Alison R

  • Thank you for sharing your experiences AlisonR. How long would you usually swim for? Have you increased it over time or found a comfortable level to stick with?

    It is interesting to hear that Tai Chi doesn't seem to be helpful for you personally. Have you been practicing this yourself, or did you have any instruction to begin with?

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