Maximum fitness with lupus

can we be athletes with lupus?
no, stick to slow meditative walks when you are even feeling well enough - 0.0%
maybe, but be so super catious, and don't push too hard - 20.0%
wouldn't know, I never feel that good anymore - 20.0%
yes go for it, I do, I'll leave comments on my strategy - 40.0%
yes, use heart rate and keep it above the middle zone - 20.0%
yes, push as hard as you want, you may have a few flares but its worth and as you become more familiar with you body, you will find that middle groud - 0.0%

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New Member

Date Joined Dec 2013
Total Posts : 2
   Posted 12/8/2013 12:35 AM (GMT -6)   
I used to run marathons and that really isn't realistic, I know that.
I would still like to have the best fitness I can. Sometimes I can run really well for weeks, even months and then bam I'm knocked off my feet my some complication.
Anybody else dealing with this?
How do you cope when your laid low? How do you train?
How do you figure out the point past which you just can't excerices?
How do you decide when you can start again?

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 12/8/2013 1:10 PM (GMT -6)   
The rule of thumb that seems to work best for me, not only with exercise but with a lot of other things (stressful situations, etc) is to do about 2/3 of what you think you can do. Then if it sets off any soreness, pain, headache or malaise, try again after the soreness is gone, but at about 10% less than what made you sore. If it doesn't make you sore, do the same level about a week, then increase by 10% for the next week. (Every other day.)

I know 10% doesn't sound like much when you start slow & can't get to the mailbox without a day or two of rest, but slow and steady really is the key to lupus.

Also get plenty of deep restorative strength and eat plenty of protein & vegetables!

I was also a marathoner & haven't been able to consistently run since Lupus arrived, but was able to do a 5K last year. For me, the weight (40 lbs) from prednisone has been a huge detriment to running!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 12/8/2013 10:38 PM (GMT -6)   
Like all complicated questions, the answer is "that depends."

For many lupus is a debilitating disease that is difficult to control but for others it is relatively mild and for others it can go into remission. I know some who do run marathons despite having lupus. Not sure if going to such a physical extreme is sensible or not but some do it.

My personal situation is more complicated because I not only have lupus but also polymyositis. PM destroyed 35-40% of my muscle cells so many of the things I once did are just not possible despite the unexpected recovery I have made. The other problem is age....70 something. I work out all the time and that and formal PT/OT has restored my active life in part. No marathons or basketball or tennis but I can ski well, hike, and play golf frequently. My diseases have been in remission for 8 years and I have been off all controlling meds for 3. Life is good again but very different.

In my opinion, there is hope if you get lupus under control and do not have any serious complications or secondary problems that you can be very active. Most of you with lupus are far younger so you have a better chance of recovering if you can find the right course of treatment. Not all can.

My dream 8 years ago was to return to downhill skiing. Crazy because at that point I was quadriplegic after losing 40 lbs of muscle in a week. No, that is not a misprint. My lupus symptoms were also very severe and I had multiple organ involvement. Fortunately, ivig got things under control and prednisone and Imuran kept me in check until I came off all meds.

If your goal is to return to an active life don't give up the dream but know it might not be easy or even possible. It might also trigger a flare if you overdo it. But I am an adventurer who was not willing to stop doing the physical things I enjoyed without a try. So far so good.

Good luck to anyone who tries but be sensible and don't push too hard. Nudge your way toward your goal and back off if your body says "no." Just remember that your body is not normal and perhaps a shorter race is all you can do. Or perhaps just a long walk. So be it, and enjoy it. You might not achieve your physical goal but you will have reached a spiritual one to be celebrated.

MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

New Member

Date Joined Dec 2013
Total Posts : 2
   Posted 12/14/2013 11:08 PM (GMT -6)   
Thank you both so much for the reply. It was unbelievably good to hear from others who are trying to be athletic as well. I will have months of as you say not being able to get to the mailbox and then it eases up and I start all over again, lol. I think the 10% is a good plan and will give that a try.
At the moment I am going through a no white blood cell, living in a bubble couple of months. I used to think that if I couldn't run it wasn't worth trying. Now I decided that whatever I do is better than nothing, so I walk on my treadmill(Wisconsin winter.) I can relate to the prednisone weight gain. It is awefully hard to take off. At the moment I'm just trying to prevent more.
I'm defintely going to keep working my way towards more running and hope to run a 5k or 10 k this spring.
Thanks again to both of you, Fran
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