exercise & self help

[Kerryann82]

evening all, thank you for taking the time to read this post.

I’ve recently commenced on Hydroxychloroquine and am just coming out of a really bad flare up.

I never want to feel as unwell as I did a few weeks ago and am keeping all fingers crossed that the medication does help reduce severity and frequency of the flare ups.

I want to try and help myself and increase my general fitness and wellbeing but I just don’t know where to start. Previously when I have tried to start a fitness regime or interest then it has literally sent me into a full flare up and I have ended up so unwell.

I really want to avoid this but desperately want to feel stronger and fitter in my body, it would also have a positive effect if I lost some weight.

Does anyone have any ideas on where or how to start to avoid a flare up. I understand that whatever I start it will need to be slow and I am on with that, I’m just so anxious about going into another flare x

should it be cardio/ weights or a mixture of both??

[Bobbydoodle]

I would start with upping your steps first. Don’t underestimate how walking can improve your health it’s done regularly. How many steps do you do currently? Then I would add an extra 1000-2000 and see how you feel. Once you’re comfortable with that and it hasn’t made you ill I would increase and stick to an amount your comfortable with. Remember steps don’t have to be done all in one go you could split them up throughout the day so you can do it in a paced way.

Once you are used to regularly commiting to walking I would then add in a some body weight exercise. Again slowly and seeing what you’re body copes with.

After that if you are able to keep it up and commit regularly while pacing and resting then I would consult with a fitness expert who understands chronic illness to take your next steps.

[Kerryann82 in reply to Bobbydoodle]

Thank u so much for replying x yes I think walking and steps in general are going to be the way forward x

[Bettina1865]

I walk and do short exercise videos online. My advice is to listen to your body, understand that sometimes it may say 'this is too much' , and don't be afraid to rest but also not to rest too much (I find there is a fine line! ). I've had to tailor my exercises due to limitations of my body but there is still a lot I can do and YouTube offers a great range of exercises . It really is about getting to know how you respond to things, and knowing there is a lot of options there. Don't stress about the flare ups (easy to say!) as I think that in itself can make it worse and get to know the resources and techniques that are available. It is a bit of a journey learning to cope with it and a different way of life.

[Kerryann82 in reply to Bettina1865]

Thank you, I’m going to spend some time on YouTube tomorrow and have a look at what catches my eye x

[Brackensmum]

Hi Kerry Ann, I hate the gym and there's no way I could run so my solution was walking. I never would have believed that reasonably brisk walking every day could have such a positive impact. Over the last 12 months I have gradually built up my steps to between 9,000 and 12,000 a day and I have not only lost 14kg but I feel so much fitter. The most important thing is to build up slowly and listen to your body. I do hope the hydroxy works for you. It does wonders for me but unfortunately takes around 10 weeks to kick in!

[Kerryann82 in reply to Brackensmum]

So glad it’s working for u, I’m going to start with increasing steps and hopefully it eventually gets me to where I need to be x

[bofishandchips]

Hi,

Having read the replies you've had so far I couldn't agree more with all of them. I have been badly affected by bilateral Pulmonary Emboli (PE) and Pleurosy brought on by Lupus. Consequently my chest and breathing has been very uncomfortable. I started with short walks (on the flat) and a gym session with a Personal Trainer (PT). I slowly increased my walking and number of gym sessions (under the guidance of my PT.

I now do at least 3 gym sessions a week and walk 4 miles on the days Im not at the gym. I still can't tackle hills yet as my breathing is still restricted. I cannot praise my PT enough, he adjusts the session to suit my fitness levels weekly.

For me, it is working by 'a bit at a time'. BUT whatever you do, get the doctor's approval first.

Good luck, you'll get there!

[Kerryann82 in reply to bofishandchips]

That’s great to know thanks so much x

[Cazpurple]

I was told that rather than have hourly sessions several times a week and suffer after, but to have more regular exercise for 20-30 minutes.

I have found aqua therapy good too. A physio is present to make sure you do what you and your body can cope with.

Walking is good too especially if you use nordic walking poles as this also gives your core a work out.

Always start gentle and see how you react after. I am going to give chai chi a go and see how I am after.

[Kerryann82 in reply to Cazpurple]

The walking poles are a really good shout, thanks x

[SF1000]

You could try the Lupus Europe exercise programme. It has been devised specifically for people with Lupus. There are videos to show you what to do at different levels of ability. They’re available on their website lupus-europe.org. I hope they help.

[Kerryann82 in reply to SF1000]

Thank you I will have a look now x

[Cath24]

Definitely start by walking - and avoiding triggers during your walk! Pollution and stressful noise are my triggers, so I always find a peaceful place to walk. Hillwalking is excellent once you're more practiced.

Swimming is also very good.

Both swimming and walking are a great way to reduce your cortisol levels and inflammation without overwhelming your body - there is definitely such a thing as overdoing it, and everyone's threshold is different, so I would start slowly. Try a bit of physio too - there are simple exercises you can safely do at home. If you take a holistic approach to your health and optimise it as much as you possibly can, you will probably find it a lot easier to manage flare ups. So for example, try to deal with the things you can deal with first - sleep, stress reduction, healthy diet, muscular pain that can be resolved (e.g. from posture etc.), exercise. It takes time to see benefits, but you will realise that your immune system will reset and cope better!

[Kerryann82 in reply to Cath24]

Thank u yes that’s a really good point, I do think excess stimulus affects me x I’m learning as I go and all these things are so helpful x

[MusicalFurbaby]

Hi Kerryann, I can relate, I feel worse after exercising! I have found slow, gentle walks are best, with plenty of pauses and sit-downs. Movement is what our bodies need, rather than intense workouts. I do gentle stretches every day for musculoskeletal issues. Hydrotherapy is also very good, as it takes the pressure of gravity out of the equation. Even just wading around in waist-deep water can be helpful. Keep it gentle and rest before you need to; and watch out for sun exposure!