I’m 21 years old and i’ve been diagnosed with lupus and APS for two years now, it’s been a really rough journey and this past year i’ve been feeling super down and depressed, and really feel defeated by it all. I really want to take some control of my life, and focus on things like exercise and diet which I find really hard to do. I wanted to start personal training / physio to have someone help me get back on my feet, but the only thing I worry about is whether going to the gym will end up making my joints and muscles feel worse? I was wondering if anyone had any experience with getting into fitness and had any recommendations of the most gentle way to go about it whilst still making an actual difference (i am extremely bored of over a year of walks in my neighbourhood)! I want to keep up with all the other young people around me and what normal 21 year olds do. but sometimes the fatigue just gets way too much.
if anyone has any advice that would be much appreciated!
Hope you all have a lovely day,
Thanks x
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lupeylady
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Exercise is an immune modifier so daily exercise is pertinent to maintain our health as well as can be expected with our conditions. I was diagnosed in my twenties too. I increased my activity level at the time and ate a vegetarian diet and had had a 20 year remission. I slacked off for a few years and had a relapse with two massive strokes and than started daily walking increasing speed and distance gradually and added forty grams of daily fiber and after five months my ANA and apls all turned negative again and I have been in another remission for over two years again.
In addition to exercise, like you mention I was filled with anxiety and depression both of which are often the true cause of our fatigue and malaise rather than the actual lupus. My quality of life and energy levels have never been better after addressing my mental health. I see a professional counselor weekly but also meditate daily. Both meditation and Exercise are great treatment tools for depression and anxiety if therapy is not available to you.
My advise is to start addressing your physical and mental well-being immediately but start lightly and add a bit more every day. Maybe start with brisk walking and light weights for a few weeks than schedule the trainer after you have awakened your system.
Thank you for your response and advice, this was actually very helpful! I think i’ll definitely start up slowly first and then reach out to get training! I do currently get counselling too which has been of massive help, and also is what has motivated me to get back on my feet physically. have a lovely day xx
Hey, I totally feel you as I was diagnosed the same age as you and I’m now 28 with very limited mobility. If you know what joints are affecting you then maybe you could go and see a physio to speak about exercises to build strength in those joints, I have lupus with endometriosis and Raynaud’s but need endo surgery before I can think about strengthening my joints. That was one of the main things I found when I was more able to move around as if you have the muscle stability around the joint then your fitness can improve.
Also look at your diet and mental well-being, like Roarah said meditation is great for the mind, I also journal (not daily but would like to) as well as doing gentle stretches when I can. When it comes to diet I find making your own meals and limiting processed food/junk food can be beneficial, I’m plant based but I have food intolerances but finding what works best for you with food is the key.
I hope you manage to find something that works for you, remember consistency is key but don’t be too hard on yourself 💛
I can't talk as a 20 year old (double it and a bit) but this year I really wanted to lose weight and get fit.... more to take the pressure off my joints and improve other symptoms than anything. I joined a gym on a rolling month contract, so that if things became too much then at least I wasn't tied in for a year. It did make it more expensive, but since I have had to accept that I just don't get my monies worth (I really only use it for swimming) I've just cancelled it. Having a membership put more pressure on myself to do exercise when, if I had listened to my body, I would have stayed at home. Instead, I'm going to do what I can when I can.. I've even blown the dust of my wii fit. It has been 'trial and error', but most importantly don't put too much pressure on yourself. By the way, I have lost 2 stone on the 'fast 800' diet - it was an initial 12 week programme and now I continue on the same principles but without the calorie counting (and still losing weight).
Hi LupeyLady. Best advice is to start low and go slow with exercising. I have SLE and persistent aPL but not APS.
I started with things that didn’t require me to be upright or weight bearing. I would use a rower and bike to build up my vagal tone and cardio endurance. Once I got into a routine with cardio, I graduated to adding some light kettle bells to help with my core because I have lumbar disc problems. I did this over the course of about 2 years. I am finally able to jog a mile upright which I haven’t been able to do in many years.
My routine now is:
Row, kettle bell MWF
Jog, bike, crunches, push ups TuThSa
I am a bit of a work out wacko and always have been. Probably have a wee bit of body dysmorphic disorder going on but without exercise, I’d have absolutely NO energy. It’s the only thing that really gets my day started (after my meds kick in).
I think getting a physical trainer who understands autoimmune illnesses might be a good idea if that is an option.
But if you want something to use at home that you can pack up out of the way, look at Erg machines. They work your whole body without crushing your joints.
Hope this helps. Message me with any questions. Sending hugs. ❤️xx
I'm interested in the concept of building up vagal tone.I think my vagus nerve is up the spout as sometimes when I eat I get what I think is dumping syndrome. Could exercise help correct this? It is a bit scary and I want to stop it happening?Used to love rowing machines and swimming etc
Yes. Exercise can help. I have autonomic dysfunction so my heart rate was all over the place. I couldn’t tolerate any upright exercise. So I started rowing making sure to last at least 15-20 minutes with heart rate up. I was on atenolol for about 1.5 years while doing this so my rate stayed low. Then I added biking so it was 20 minutes on both. Kept HR above 100. Then after I could this with reliability after about a year, I added in calisthenics and light kettle bells. After 6 mos of this, I stopped my atenolol because my HR was going into the 30-40s and I was almost passing out.
I can say with 100% confidence that a habit of cardio will definitely help strengthen your vagal tone. My HR now sits 50-60s at rest. I still feel my heart pound like the dickens if I’m climbing stairs or bending over but nothing like it used to be. I also got adrenaline dumps all the time as well. I’d turn beet red. I think this has improved with both lupus treatment and MCAS meds. I don’t get them like I used to.
My heart rate goes manic for no reason sometimes - just sitting resting then back to normal again. I think I might be getting adrenaline dumps as I turn beet red regularly. Cardio may be an answer for me - thanks for heart rate details too - I'll try and slowly progress and monitor.🙂
I recently tried mindfulness yoga, and repeated the exercises twice immediately after the session. I then had ataxia the next morning and could not coordinate my legs walking for a few steps. (I thought it was MS like and there might be demyelination due to inflammation or something). I maybe connected the two things and it just happened by chance. It went after half an hour and has not returned over the last two weeks. I have put these exercises on hold for a while.
There are a lot of us on here who have weird neuro problems including ataxia but not MS. I have vestibular and balance issues when I flare. You should make sure to be evaluated by a neurologist or at least get a brain MRI to make sure everything is okay. Just better to rule out stuff and not miss it. We all connect things but sometimes, it is purely coincidence.
Neurology also can advise on autonomic dysfunction. It might be worth trying a beta blocker if you dump frequently. This made me feel boat loads better and took some of my swelling away initially. Beta blockers typically make ppl tired. The fact that it gave me pep was a sign that my body was too revved up and wasting what energy I had.
I think meditation could probably work too but I’ve never been good at meditating. I wind up wanting a nap 5 minutes in. 😂
It’s really tough and I totally sympathise with you. I think the unpredictable nature of our conditions can make it difficult to have a consistent exercise plan. Yoga is quite a good exercise for us as you can scale it up or down depending on how you are feeling. There are lots of good videos on YouTube. I like Yoga with Adrienne and Kassandra Yoga.
I’d also really recommend going to a physio. I went to one recently and I wish I’d done it years ago! They can help you with a really individualised exercise plan, taking into account your Lupus and how it impacts on your body. It’s important to strengthen our muscles to support our joints but not to over-work our joints!
As others have said- don’t push yourself too hard. Try to find a level that works for you. It can be trial and error to begin with! Good luck !
Just wanted to say I was also diagnosed at age 21 I am now 42 yrs old I have both lupus and APS too.Yes I'd try and build up slowly and mainly listen to ur body but definitely try and keep fit and active.
It's one of my biggest regrets and now I'm 42 and overweight and struggling against daily steroids all the time too so def try to maintain things better than I did I would say!
Hi thereMy 21 yr old daughter was diagnosed with SLE at 15 and I am a pilates instructor - exercise is a major non negotiable in her life - she ran a half marathon 2 months ago ( and was exhausted for the following few days!) and has had endless joint problems associated with her Lupus and meds including a fractured hip
I would recommend gentle pilates or yoga as a start along with regular walking - see how you get on and build up from there - most important thing to remember is to listen to your body - some days you will be able to do more than other days - the happy hormones released from exercising are such a boost - you want to exercise in a way that it becomes a habit and you can keep up with it and it doesnt become a chore
Do you like water exercise… if you do try aqua fitness classes, water is an amazing form of exercise for people with all levels of fitness. I go to aqua fitness classes and I also teach. I have clients for hydrotherapy classes (referred by physios and GPS), I am also so happy that even though they have limited mobility on land they shine in the water.
You may have a GP that could refer you to aqua sessions at no cost… generally at local swimming pools.
Water exercise, even in its gentlest form gives a person a full body workout with the water taking the strain. I am a firm believer that we exercise in water to improve our function on land.
Morning .. sorry just caught up with mail !I have always been a fan of speedo for quality. Have a look at these sites and perhaps they will point you in the right direction…
HiSwimming is good as it's low impact and the water supports you,I've had lupus for 20 years now and I swim 2 - 3 times a week depending on how I feel,sometimes I have to force myself to go but I always feel better when I've been and the fact that you burn off more calories in a 45 minute swim than a hour walking is a bonus.Hope this helps
I wish you well on your journey, I understand how difficult it must be. Being positive and taking control of your life in anyway you can is so important. Mental health and physical health are linked so working on both will definitely be good for you. Its definitely worth starting gently and building up. Regarding a personal trainer , getting the right one is so important, it should be someone you can develop a therapeutic relationship with who you feel comfortable to tell about your diagnosis and explain about fatigue, a personal trainer will help keep you motivated. Good luck, take care😘
Hi there. Must be really hard for you at such a young age. Anyhoo, could I recommend yoga? Being a yoga teacher and my eldest participant is 97 and only started 2 years ago, so that's what keeps me going! Over the years, I have adapted my yoga to fit in with my physical and emotion needs at that moment in time. I am unable to walk very far, due to the neuropathy in my feet. I would recommend you start with a restorative yoga and or yin yoga class and because of your age, there's no reason in the future why you could not participate in any of the more challenging practices such as Ashtanga or Kundalini. I used to love both practices when I was a youngster. I'm now just coming to terms with my 60's! For me, when I ache so much, usually at the end of the week, I prepare my space with a candle, drop the lights and find a Yogaia class (I've been a member for over 4 years) and I now really look forward to it since my physical diagnosis. Although I have been dealing with Complicated Grief for 50+ years. I digress. Yogaia do offer a trial period online, but there are loads of classes on YouTube. I work on the basis that to start slowly, work with what you have on that day. Restorative and Yin Yoga might feel like they are not doing much for you, but they are working on a deeper level, creating space and strength in the areas we sometimes do not get an opportunity or do not think to exercise. The most important thing is to move though. Even on my worst day, I practice my foot yoga and hand yoga as I have a lot of pain in both places. If you try Yogaia and btw, I earn nothing from it, try Yoga for Anxiety with Craig Norris. That's my go to class. Namaste 🙏 🧘♀️❤
Hi I can truly understand how you are feeling, I’m 20 and been diagnosed for a few years. I used to go play football and go on runs but it feels too much on my legs now and can only do these things for a short period of time. Exercise and diet can be difficult to stick to and for us we have the added fatigue and aches.You should look into physio and training classes if that’s what you want to do. If it’s then not for you, you can always back out.
Because I still have a love for football however I do kick ups and other challenges as a fun way to exercise. So maybe something similar? I also do 30 min workout (when I feel bothered to 😅) to do exercise for my arms and stomach. I’ll lift a couple of small weights and do squats, sit ups, wall sit etc things that I’m able to do (not super easily but I manage 😂)
I'm inspired by football too. I did a refereeing course once for fun. Now in my early 60s I have a bag full of soft footballs to dribble around the place, as safely as I can, for a minute or two. There is a football pitch near where I live and I sometimes try to jog the lines and walk bits. This is much as I can do at the moment but makes me feel happier as I think of my favorite team etc
I have had many problems with mobility due to lupus. The worst was being wheelchair bound for four years . Rituximab transform ed my life. I had to build from a low base . Exercise is so important as stopping moving can create a whole new set of problems. If I were you I'd simply start by walking and try to do a little more each day. Be mindful of when you need to rest and what you can do. Check out options eg a gym near me has sessions for people with mobility issues which is very good. Also ask for a referral to a physio as they will advise what are the best exercises for you to do and which to avoid. Take care. Focus on what you can do. Things will get better.
Mind u I lately had a physio assessment for my back and he said that the daily walking that I do to try to lose weight is bad for me! But its really all that I can manage to do. Just cant do anything right
Well, I am a 61 year old APS/Lupus patient: for the majority of my Life I was a Dance/Fitness instructor. Pilates has been my savior. I was diagnosed at age 47 after a stroke.
Dear Lupeylady, It sure is hard making yourself move. I am 74 now with lupus nephritis. 2 years ago I got a personal trainer at the gym. Suddenly I didn't need help getting from a sitting position. I used the treadmill to do 3 miles a day and chose to work on flexibility. I really got stronger. It made life easier. The hardest part is keeping a commitment to yourself to go. Reward yourself with stretching and not a chocolate bar as I have been known to do. Good luck. You will be glad you did!
I have used a trainer before, I started by explaining to them what my limitations were and they would adapt the routine, that is nothing strenuous on the knees or wrist. No exercises that require sudden movements or jumping etc. No Burpees, no HIIT. I've been a member of a gym and joined classes as well, pilates, barre, yoga are great "young people" type activities. Did spin a few times as well but you will need a laid back class and not one of those competitive ones. TRX classes or with the trainer may be manageable as well. Try a few of the options, don't commit to a set schedule and you'll find what works best for you.
It's a balancing act with lupus unfortunately, but I follow Sybella.davis on instagram who has lupus and is a fitness trainer, she might give you some inspiration and advice. Good luck xx
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