Running with lupus

I’ve previously used this site to ask questions (and have been incredibly grateful for the advice and support received), but I wanted the opportunity to share with you the positive experiences I’ve had with running. I wanted to share this as I’ve seen a number of questions banded about on the internet about running with lupus, and whilst of course everyone’s experience with an autoimmune disease is different I wanted to say that yes it is possible......

My story with lupus began last year; after a terrible 12 months of illness with the ‘usual’ symptoms, the ANA tests came back positive. The rheumy is still unable to confirm lupus or sjogren’s (although I have no problems with eyes or mouth so we’re quite certain it’s lupus, but I think there’s a reluctance to say for definite too soon!).

Prior to these problems, I’d been a keen runner, beginning at first puffing and panting after a mile, but eventually moving on to run several half marathons. As you can imagine, during the course of 2011 running felt incredibly difficult (at times impossible), and this time last year I thought I’d never be running properly again. But now, in less than four weeks time, I’m going to be running in the London Marathon!

There’s a part of me that finds it hard to believe that I’m even writing those words, let alone am actually set to run the marathon that I’ve avidly watched every year on the television since I was a young girl. But thanks to a good dosage of medication, patience and support, I’m doing it.

There have been numerous trials along the way in my training, not least with flares, joint pains, severe chest pains, swollen glands, fatigue, etc (and seemingly catching every illness going); my raynaud’s also caused me to sprain both my ankles in December (due to the numbness of my feet), and I had another experience of falling off a cross trainer due to the same problem. Another time after a long run my hands were so numb it took me 15 minutes to be able to flex my fingers enough to use my front door key and get into my own house!

You see, whilst running with lupus is not impossible, it certainly does make it more of a challenge.

We all know that we cannot predict what each day will hold for us; therefore whilst I can plan my training to a tee, there is never a guarantee of if and when I will be able to run. But listening to my body is essential; I’ve tried to run whilst on the start of a flare before, and believe me, it is not a pleasant experience. I ended up hobbling home in tears with the pain I was in.

I've found though that the key is to run whenever I am able to. If I feel good then I know I must get my running shoes on, as if I put it off until tomorrow I can’t guarantee that I’ll be well enough to do it. This can actually turn out to be a real positive; I’m sure that most ‘normal’ runners would agree that there are times when it can feel like a real effort to convince yourself to go for a run. For me, I really relish every time I am able to run, and so needless excuses are few and far between.

Of course there’s a nagging concern that my body may get me through the training but come race day if a flare starts then there’s nothing to be done. I’ve been panicking about this for a while in the build up to the marathon, but I’ve come to accept that this is unfortunately part and parcel of the disease, and whilst it is incredibly frustrating it just has to be accepted as a possibility.

During my training there are lots of things I’ve had to give up; training for an event as big as a marathon means that between that and work I’m pretty much beat; but my friends and family are incredibly understanding about why I’m such a stranger to them for the time being.

I firmly believe though that overall running has actually helped my health; after all, exercise is good for joints, makes you more positive (helping stave off any feelings of depression) and also runners tend to have a healthy balanced diet, which I also think is so important. Whilst running a marathon may not be for everyone, I’m a definite advocate of running for health!

I applied for the marathon before I had any diagnosis, and so applied to run it for the British Heart Foundation (although given my chest pains maybe it is quite suitable ;-)

It would be really good to hear from others who are running with lupus too.

Lindsay

justgiving.com/Lindsay-and-...

15 Replies

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  • Well done you !!!

    I used to run and have just started on Hydrochloroquine (i think thats how you spell it) and was really hoping that after the inital 6 months getting it into my body then I was hoping that I could take it up again. Nothing like the freedom you feel when going for a good run.

    Good luck for the marathon, let me know how you get on.

    Loopylu

  • I too was very fit before the Lupus hit. I started the couch to 5KM in 12 weeks, in Oct and I am in week 7 (LOL), it is very liberating to be able to run and it is also very invigorating. Exercise itself does not cause Lupus flares, we probably know our own bodies better than most, do what you think feels comfortable and achievable.

    Good luck with the marathon!

  • well done

  • Lindsay, I have Lupus and RA, and not a runner at all ! I just wanted to thank you for such a positive and inspiring post and wish you all the best,not only in the Marathon but in everything esle ! You go girl !!

  • Run! - not if I can help it lol! Thanks for sharing your positivity ! I, if not too tired use my exercise bike each night. I have found that since doing this from Jan with my GP's advice my stamina has improved somewhat - as well as the tone in my legs! Keep up the good work - but remember not to overdo!

  • Run - NO! I was born with spina bifida & diagnosed with lupus age 19 after about 7yrs of symptoms,lol!! I have got a puppy this year & it is very liberating. I get really swollen ankles but my gp hopes by walking the puppy it will strengthen the muscles & aid circulation. Thats my contribution to keep fit!

    You are a true inspiration, I remember the trainig my friend had to do to do the marathon & be had no underlying health issues. You are amazing! Good luck, I will be thinking of you & keep us posted won't you!xx

  • You are a true insperation, i used to keep fit until 2 years ago, then took ill. i was really bad then i went into remission and walked the Great Wall of China for charity, but unfortunatly i had a flare which is still going, but you have inspired me to get myself into action and start getting myself fit again. Good luck with the marathon. please let all of us know how you get on.

  • Big well done to you! I am a fitness instructor and qualified personal trainer. I run, attend body pump classes, boxercise, yoga. I instruct Zumba and Kettlercise classes. It is possible :-) - when I go through a flare, I listen to my body and advise my participants that I'll be doing the lower options on those nights (of course, they have to work even harder!) Exercise and fitness are my passion and I do get angry and frustrated when Lupus gets in the way but I believe I would feel far worse without having this as my career. Good luck with the marathon and thanks for sharing! :-)

  • Hi Lindsay.

    Yipee another Lupy who runs. I took up running because of Lupus. I was told I would be on steroids for life so took up running to combat the bone density loss.It is like running in a suit of armour but hey I love a challenge. I too have run marathons. How did London go?? What part of the country r u from? perhaps we have been in the same run at some point. I race most sundays well` Race` slowly haha... I think of it as running with the pack of wolves rather than from it. It makes me feel i am beating my lupus. In fact running got me so fit that i was able to come off all medication and stayed off for 15 yrs or so until oct 2011 got dxd with another auto immune, lambert eaton, so have had to go back on drugs to get it undr control ,had 3 months without running (I was cracking up) i am gradually decreasing the meds now as u cant suddenly stop steroids but will soon be off them. I am in for the edinburgh marathon in may and looking fwd to it. I did beachy head marathon last oct and that went well. When is your next race and where? Wouldnt it be great to meet up for a blether. Happy runnng x

  • Hi!

    That's such an inspiring story and to be running the london marathon! Well done you! I want to end up running a half marathon this year. I tried to get into running, but when I do my knee joints seem to hurt for days after. Did you have this problem?

    Good luck with it all!

  • I am so pleased to have found this post. I am a runner and triathlete. This time last year I was preparing to do a half iron man distance triathlon. I completed it and expected to be doing the same this year. Unfortunately I have been struggling since October and await a review by the consultant in 2 weeks time. Whatever diagnosis I get I hope to kick these awful symptoms and re-start my running. At the moment I can't believe I ever ran a mile let alone a marathon. So this has offered me inspiration and hope that I will start to over come this and take control of my life again. Thank you x

  • I can't believe I have just found this post. 0ne week into treatment and I feel dammed if I do, dammed if I don't. Have done a couple of marathons, and many halfs, I have been really struggling. Told by others I can't be that bad if I run, I feel if I took to my duvet I'd be accused at not coping. Can't win!

    So thank you, great to find a positive post - and madlottie, i recognise your name from some of the other threads which is also really encouraging. Thank you, and hope u are all continuing to do ok. I'm on day 4 of 20mg pred and hydroxy and after an initial high am absolutely shattered tonight. Must learn to pace ..... :)

  • You have runners high!!! lol....I don't run, but its aerobic and I know its a great feeling...I was addicted to aerobic dance, but gimped lower back long ago, so was told to walk, swim or ride a bike...You have to go by how you feel, and if you feel strong enough to do it now. BUT, also you might be able to do it, but next day totally wiped out. Maybe take it bit by bit, see how it goes...smaller runs etc...Like you said, you eat really well....Im like 3/4 back to my energy level...boy oh boy Im happy about that! I walk lots now...I cant afford the gym yet, but would love to go...

  • Thank you for sharing this! its the motivation I needed!

  • hmm this may not be lupus ask about a kenaloug injection my cousin could not run walk on his back for 3 months whent and saw a guy privatley he said u should have come sooner You have got what football players get your imune system is attacking u because of your fittness WITHING 3 DAYS OF THAT INJECTION HE WAS WALKING AGAIN. aLL BECAUSE OF HIS FITTNESS THING.

    jUST A THOUGHT 300 QUID AND SORTED

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