Lupus and running

18 messages
08/11/2006 at 14:30
Hi - I am usually to be found on the INSPIRE thread, but have just been diagnosed with an autoimmune condition, "SLE" or "Lupus". I have had this in a fairly mild form for several years, mostly have joint pain, aching limbs, flu like symptoms, headaches and tiredness. I have "flares" when I don't fell well at all, and also have times when I feel fine. I have managed to keep running through most of the flares but sometimes just can't, and my consultant says to continue as long as I feel okay! I have just started to take some medication for this condition which might take some time to work. I just wondered if anyone out there has any experience or knowledge of this condition and advice on exercise / running with Lupus?
08/11/2006 at 14:31
no--i know a bit about lupus(am kidney doc rateht than rheumatologist)-but there isnt much specifically on this AND running.I think another forumites hubby has it actually
but good luck
which meds have they put you on?

You are being careful about total sunblock arent you
08/11/2006 at 14:57
Hi Plodding Hippo -Thanks for the speedy reply! I have been put on Plaquenil (hydroxychoroquine sulphate -400mg a day).I have no kidney involvement thank goodness! I always use sun block but will be particularly careful from mow on! I want to continue with my running as it is the one thing can keeps me sane! Thanks again.
08/11/2006 at 14:58
I think your running can only do you good!
as long as you listen to your body

08/11/2006 at 17:34
Thanks, I think I need to make some order out of the my chaotic life! I will listen to my body - does that include the little voice that says "I need some chocolate now?"
08/11/2006 at 17:35
choclit is a good source of iron

as we say in yorkshire
"get it across your chest"
08/11/2006 at 19:42
Okay then - if you insist!I'll save some for you - has to be Green and Blacks!
10/11/2006 at 14:54
was diagnosed with lupus about 7 years ago, it's affected me in various ways, including joint invovlement, cutaneous vasculitis, raynauds syndrome, and pleurisy. plus i have the associated hughes syndrome, which basically means i've got sticky blood and a few years ago had a mini-stroke. i also take hydroxychloroquine but also anti-coagulants regularly, and steroids as and when, though at the moment i'm pretty much in remission.

however, there's no reason at all why you can't run, in fact, i did an ironman this summer. a few things to bear in mind though:
1) suncream - really really important. when i was diagnosed, it was a couple of weeks after doing an 80M run over 4 days,in the sun and they think the sun might have been what triggered it. you can get sunscreen on prescription if you have SLE (though if you have to pay for prescriptions anyway, you might be better off getting it OTC!)
2) make sure you drink plenty when you exercise to avoid dehydration. this can tip you into renal failure if you have any underlying problems.
3) because i've had problems with clotting i try and be sensible when cycling - ie don't go to places where no-one will be around in case you come off etc etc. prob less of an issue for running, but cram tags or a medic alert with your medication on might be useful.
4) if you take steroids, be aware that your immune system can be a bit compromised, and be sensible about training. e.g. last year i got a chesty cold, ignored it and went training anyway, and ended up in A&E that evening with a pneumonia and a collapsed lung. i am endeavouring to be more sensible this year!
5) if your joints are sore, try swimming because it's non-impact. even cycling is better.
6)don't feel sorry for yourself. it's completely counter-productive.

hope this is useful, if you have any more specific questions, you can drop me an e-mail through RW if you want.
10/11/2006 at 22:04
Thanks for the post ergo-phobic. So good to hear that you can continue with running with Lupus. I think that the main thing for me at the moment is learning to pace myself, as I do have a tendency to overdo things! I have ended up in A+E several times with pleurisy and as I have asthma, probably not sensible to try and keep going in such a state!

I went for a short run yesterday and felt quite sick, but I think it may take a while to adjust to the hydroxychloroquine. I also take steroids from time to time and try to be sensible when this is necessary - well no choice if you can't breathe!
Thanks for the advice, I’ll sort out the suncream and remember to stay hydrated ,I have started to take water even on short runs as I notice I feel better. I also swim regularly and was a swimmer before staring to run, I intend to keep this up. I have a busy job, a husband and three children to keep up with, so the chances of feeling sorry for myself are slim!

Thanks again – I may drop you a line from time to time if that is okay with you?
11/11/2006 at 14:01
course, no probs.
12/11/2006 at 18:41
I was diognosed with SLE about ten years ago, initially my symtoms were very severe and I was prescribed plaquenil, anti inflamentries, steroids and other painkillers. I continued to run as best I could through this period and after about 5 years the disease calmed down. I am now back to running as well as I was before even with being 10 years older. I am careful about the sun, the cold and not getting too tired. My advice is do what you can but realise you are going to get tired
13/11/2006 at 04:04
Hi cabbagepatch - thanks for your advice. It sounds like your symptoms were really severe, well done on continuing with your running. It's great that your symptoms have calmed down now, and that you are able to run well. I do get really tired and I am having trouble sleeping at the moment which doesn't help! My life is far too hectic and I am struggling to keep all the plates spinning at the moment - if I didn't run, I think they would all come crashing down! I'm so encouraged by the experiences of others with SLE.
25/11/2006 at 11:31
Just wondered how others with Lupus deal with the frustration of not knowing how you are going to feel from day-to-day? I hope the Plaquenil will eventually help, but at the moment I am getting really annoyed at not being to stick to a training schedule as I may feel able to run one day and barely able to get out of bed and get to work never mind run the next! I think that stress and tiredness make the symptoms a lot worse but I use running to relieve stress , so it’s a bit of a vicious circle at the moment!
15/03/2007 at 13:37
Hi MadWelshWoman.

My hubby was diagnosed with Lupus just over two years ago - I assume it's me Hippo mentions above as she gave me advice then on a wee thread I started.

He didn't run for nearly two years as the doctors struggled to find medication that didn't cause side effects worse than the condition.
At the time it was just awful but we got through it and things have calmed down loads now.

He's back running - taking it easy - back at the gym. the mountains and the swimming pool. He can't do anything like what he did before but I think our hectic work schedule probably doesn't help.

Normally we do some running or a wee hill walk at the weekend and then he's very careful to get a good rest - a good night's sleep (8 hours+) is absolutely essential.

On Sunday we're going to attempt our first 'big' mountain since he took ill - fingers crossed.


Take it easy, make sure you get plenty of rest and don't be gung-ho with colds and stuff - as ergo-phobic says, a cold can easily turn into pneumonia and a 10 stint in hospital (we've learnt that lesson now).
15/03/2007 at 13:45
Ironman Ergo-phobic?

I'm impressed.

Not sure whether to tell hubby about that in case he starts getting ideas.

When he took ill we had just started training for a full marathon - but I know he's always wanted to have a bash at the triathlon thingies. We'd completely given up on those options.

Might keep mum about you in case he starts bossing me to the pool...
15/03/2007 at 17:55
I have Hughes syndrome but fortunately for me not lupus as well. I take aspirin daily and don't think about it otherwise. My sympathies and best wishes to you peeps with lupus - makes me realise I've got off lightly with just Hughes.
15/03/2007 at 18:23
Don't have none of the above, but do have something auto-immune with the tiredness bit.

I think you will figure out what you can get away with, and perhaps flare-ups aren't entirely random.

I find I can do "hard" if it is balanced by extra rest. I can't do "hard" and work hard and domestic chaos all at the same time.

Scheduling in emergency rests - activities that can be sacrificed if need be - after, or even before, hard efforts usually keeps me out of trouble.

Best of luck with it. That helps, of course.
02/05/2007 at 13:26
Hello to Azacaya, slo sho and Stickless and to Hippo, Ergo and Cabbagepatch!

Thanks you for your stories and advice.

I have continued to run with varying degrees of success. I was lucky enough to get a ballot place for the FLM but didn’t feel well enough to pursue the training. I did manage a half marathon about 6 weeks ago and didn’t really suffer too much as a result so I’m still hoping to do FLM next year.

I believe that I would feel worse if I didn’t exercise – I swim as well as run and if I’m not feeling so good I cut down. I have just made a few minor changes to work /life balance which I also think will help.

Sorry I missed your responses for a while – I was not able to access the site for a while and this thread got lost in the multitude of injuries and illnesses!

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