Exercise - pushing the boundaries

[Sarah79]

Hi,

I was diagnosed a year ago with Mixed Connective tissue disease. This includes Lupus. I'm 28 years old and have been a competitive Triathlete for the last 7 years. This would involve "training" 1-2 hours before work and after work and more on the weekend. I absolutely loved it. I wasn't feeling well, but just thought I was going through a rough training patch, then I get told I have this disease.

Anyway, I'm still pretty devastated cause it's taken away the life that I loved. My Doctor can't encourage me to do it. I was in hospital with Lung Disease at the end of last year, and am now on Prednisone and Imuran. I feel good, no bad effects at present (touch wood). I tell my Doctor I feel like there's nothing wrong with me. I do realise that's probably because I'm not in a flare, and the fact I want to compete again!!

Anyway, what I'm trying to find out is if anyone else has been an Athlete and also whether anyone else pushes the boundaries in terms of exercise. I search the web hours on end trying to find any latest research.

I know things could be worse and I should be happy I'm feeling good. But us fitness freaks are a weird bunch!!

Anyone else out there?

Cheers
Sarah

Sydney, Australia

[sadieone]

Hi Sarah,

I haven't won any triathylons or marathons in my life time but i did enjoy my exercising.

I would jog everyday and do weight training, yoga and aerobics.
I have been told i have MCTD and Fibro with 2 slipped disks a year ago.
it's like learning how to walk again. But this year i got on the treadmill to build stamina as exercise is good for fibro (so they say) and it wore me out. I keep trying with aquatics and just walking but not on the treadmill,,, but i dont think i will ever get back to where i was due to the my back and the fibro.

In your case you may be able to do so,,
All you can do is try.

Good Luck

[Zoi]

Sarah,

I'm sorry you haven't been able to continue the Triathlon lately.... :(

In terms of exercise, depending on your energy levels, disease activity and lupus-related health problems (i.e. arthritis, lung disease etc) you can pick one of many exercise types that are out there.

Some people here do aquatherapy. Have you looked into that at all?

Or you could perhaps try some gentle swimming (as it doesn't put excess weight on joints)?

I've recently discovered this vibration machine (Vibro Gym) and do many exercises on that (at first with the help of a trainer) and find that helps a lot. I did have ask my doctor about that as there's a contraindiction with regards to prolonged steroids use, but he was ok with it! There's stretching exercises on it as well, that help with the occasional sore muscles! Have you heard of it?

Have you thought about going to a gym and discussing your needs and problems with a trainer there or a physical therapist?

Hope you find an exercise regime that suits you!

Zoi

[Raglet]

hi there

i love going to the gym, and go three or four times a week before work, and walk my dogs each night.

I am limited in some respects due to my severe balance problems, but then at the gym there are all sorts of things that you can do with virtually no balance at all, so I feel a lot free-er at the gym than i do anywhere else.

I have lupus, and i find that the main thing is to be flexible in what i do and not try to over achieve. I spent about an hour in the gym each time I go doing a mix of stuff - caridac and resistance, I enjoy it but I am not 'driven' about it if that makes sense. I just do what feels right for me, and yes over time I am getting an awful lot fitter, but I am not remotely competitive, it's just not in my personality. I am probably too lazy anyway, and seeing walking is a challenge running is definitely a distant memory. I love the cross trainer at the gym, coz it gets pretty close to a running motion and that is pretty phenominal for me. A real buzz.

never thought I would turn into a gym bunny (as people keep calling me) but I did!

I also love walking my dogs - they run like mad while I trot along slowly on my crutches. It is a real blast, on a penninsula that reaches out into the sea, it's my favourite time of the day

cheers

raglet

[Joandublin]

(((((Sarah)))))

First of all, welcome to the site. Im sorry that this disease has taken away so much from you :hugbetter:

Im not a fitness freak myself but my daughter just loves running and all kinds of outdoor sporty adventurous stuff so I can just imagine what it would be like for her to have this taken away from her. She is the same age as you by the way.

I just couldnt imagine that you could begin to run competitive Triathlete again:sad: Maybe Im wrong but it strikes me that the amount of exertion and training you would have to do would not be good for your system. I dont have any words of wisdom to offer you Sarah - just a voice somewhere out there in the world that wanted you to know I understand how difficult this is for you.

I would think that your best bet would be to start off doing small amounts of training and see how this is affecting you. I guess none of us knows how far we can push ourselves until we try.

Other than that perhaps a different kind of sporting interest might be something you could consider?

Whatever you decide you do I wish you the very best of success and good fortune with it.

Welcome again!

Luv n stuff
Joan:rose:

[Maia]

I used to run in races (10K usually the longest), and did a couple after my lupus diagnosis but did not run as fast or as competitively as before.

There are different viewpoints on hard exercise and lupus and as with everything else I'm sure it is an individual thing. You won't know how it will go for you unless you try. But if you try, you will absolutely need to listen to your body this time around and not just push through not feeling well. This is especially true if you have organ involving lupus.... if you are confident that you are capable of not over-doing it, and of listening to your body cues instead of letting the competitive edge take over, then you may want to give it a try but definitely listen to what your doctor says as he/she knows all the details of your case and we don't.

Also, since a lot of your training is likely to take place outside, it will be important to use sunscreen and/or protective clothing. Good luck & I hope you continue to feel so well! Long term remissions are possible :)

[shelly21]

hey sarah!
although i had been a fitness freak for a while, at the age of 20 i started training for a 26 mile run! i was training 7 days a week, running for miles at a time. i absolutely loved it. obssessed was not the word. any time i had any free time that is what i would do. even when i did not have time....

i developed a rash, and decided it was from excess sweating(i know, whatever is the word) i ignored it and continued. then came the pain!! and oh what pain. this i decided came from pulling a muscle or something, and decided the only way to get rid of pain is to continue excercising....

to cut a long story short, i went from running about 15 miles a day to not even walking up a flight of stairs... i dont know if it is because i over did it, or what but i havent done any real excercise for nearly 2 years now!

I AM LYING!!! TODAY I WALKED OVER 6 MILES WITHOUT STOPPING ONCE. it was the most amazing feeling but i know this week will be absolute **** trying ot get over the pain. i only did it to prove it to myself

good luck sarah, my opinion is do as much as you feel you are able. you need to have a let out somehow!! but dont overdo it!!!

hope all goes well

xx

[flyinghigh]

Sarah Don't let anyone or anything hold you back from what you love. You may need to adapt new ways of doing your training but you can do it. Only you know your body and what it is able to do and how it feels. Just remember to listen to it just like you did before in your training. Good luck with finding what works with and for you.

Flying High

[raggedyann1]

Sarah,

Why don't you start out slowly if you haven't been doing any exercise and slowly build yourself up. What is slow for you is probably really fast for me. Gauge yourself as to how you do after you exercise. Not just that day but the 2-3 days following. The one rule I was told is that with Lupus we do not push ourselves through the muscle pain barrier, we need to stop then. So if things continue to do well maybe you can run a triathalon by next year? or later this year? Before you enter a race like that I suggest you get your doctors approval.

Let us know how things go.

Take care,
Karen