Gday Andrew,

My girlfriend suffers from lupus. Unfortunatley she has it quite severe and some days she is in extreme pain. She was a good netaballer and squash player and led a very active life. It started out manageable but as the years go past it is worsening and she is now very limited in what sort of exercise she can do. She is pretty much limited to walking.

We have tried to find info on exercising & lupus however there doesn't seem to have been too much research carried out (they don't even know the cause of the disease). Most suggests that swimming, tai chai are the best types of exercise.

I do know of some people with the disease who train using weights, however, they seem to put themselves through a fair bit of pain.

I would also be interested to hear from anyone who has any advice for exercising and this condition.

Jamie

PS One of the causes of flare ups is sunshine so running may not be the best exercise - although is that really a problem in the UK? :)

Andrew,

further to my post of early today thought I'd give you a little more info. Obviously i don't know how much you already know about the illness but you may wish to consider the following.

The disease is caused by excess production of antibodies. Instead of protecting the anti bodies will react abnormally causing
- fatigue
- muscular pain/inflammation
- fever
- sensitivity to sunlight
- vasculitis (inflammation of blood vessels)
- headaches, depression & anxiety
- kidney damage
- pleurisy
- chest pain
- mouth/nose ulcers
- hair loss
- anaemia
- thromocytopenia - lowering of platelets in the blood
- sticky blood/hughes syndrome - blood becomes more viscous causing clots

As you can see there are quite a few considerations when prescribing exercise programs.

Greetings Andrew & Jamie,
I am a triathlete who was diagnosed with lupus this past fall. Unfortunately my plans to complete Ironman Canada this summer will not be realized since I have yet to recover from the "flare-up". I am determined to return to training for triathlons. Just wondering if either of you have gained more knowledge about the training regiment for athletes with lupus since you last posted these messages? Perhaps we can collaborate on this topic?

Looking forward to hearing from you.

Cheers,
Melissa

gday melissa,

since my last post on this topic i have been unable to make very little headway on suitable exercise for lupus sufferers.

my girlfriend has suffered from a "flare up" for the past 2 years. In that time she has been prescribed various drugs to alleviate the pain associated with the "flare up". In recent weeks she has ceased using the drugs and her symptoms seem to have worsened so exercise has not been an option.

On a brighter note - two women that attend the gym i manage who both suffer from forms of lupus are exercising on a semi regular basis. Whilst the workouts are of low intensity the fact that they are managing to exercise must be considered positively. Over the past few weeks i have tried to incorporate 15 - 20 minutes of stretching as part of their workouts and this appears, at this stage, to be assistaing in their general wellbeing.

The main thing i have noticed is that both ladies will miss lengthy periods (2 - 3 weeks) of training due to some of the effects of lupus. The major inhibitors appear to be lethargy, pain and depression.

Melissa, i wish you all the best in your battle against this debilitating and very misunderstood illness. I would look forward to hearing from you on how you cope with the effects of the illness and what sort of exercise you are able to undertake.

All the best
Jamie Douse

Hello Jamie,
Thanks for the message... I hope your girlfriend will soon feel better and be able to exercise again.

I have decided, despite pain & fatigue, to forge ahead with some basic triathlon training (approx. 4days/week; run, cycle, swim). I am not willing to give up what I love to do yet... the mental health pay-off for me is far greater than the physical pain right now. On July 23rd, I will be participating in a sprint tri - hopefully I will be able to put a race together! I'll let you know how the experiment goes.

Everyday is an unknown - that is one of the difficulties/frustrations of this disease.

Take care,
Melissa

gday Melissa

I am not being patronising when i say that i think you are very courageous for heading down that track.

Stay strong & good luck.

look forward to hearing how you go

Do you have any suggestions, or experience with athletes who have lupus? I kind of know when I'm pushing it too hard. I am not trying to be competitive at all, only enjoy the sports and like the benefits it gives me mind and body. Pretty much everything I do causes pain and aching, but after doing endurance sports for years it has made me slow down somewhat, but I have added the rock climbing now, so it hasn't limited what I do. Any suggestions? Thanks, in advance, BJ

The only posts I ran across on this site are from 2006. Any new info on training /exercise for people with Lupus? bj

Hi Melissa,
I also have lupus and am a triathlete. I was diagnosed a year ago and competed in my first half-iron this summer. I've been a runner for years and just started triathlon two years ago. I've been looking for some kind of specialist of endurance athletes and lupus but am not having much luck. Any suggestions?

Hi Melissa,
I don't know if you are still around here since the last post was months ago but I am a runner with lupus and also am at a lose to find info out on exercising. I was diagnosed 4 years ago and up until January ran about 30-40 miles a week. My lupus has been acting up and I can't run as much because of the fatigue. I was hoping to get some advice here or at least comraderee.

Jeannie

Hi everyone, I am new here, and was hoping to get some info on high intensity training while having lupus. I finished my first triathlon in March of 09 in Hawaii (lavaman) I did well, but I know I can do even better. I have SLE and while the swimming and biking are not much of a problem because they are low impact, the running is another story. I seem to be doing ok now since I was put back on a low dose of prednisone. I feel much better. I want to stay that way, while training hard. I have not been able to find any information about athletes with lupus. It seems to be a mystery as to what can work for us.

So until then, I will train as I have, and back off when I need to, but would be nice to get my hands on some information as intense training, but also being safe about it.

Cheers,

Julie

Hi Julie and all Lupus fighters! Training thru Lupus is hard...er. Sometimes while training we are in pain, more than others, that's ok because we will overcome and be the victor! Since we will take the pain training with Lupus, when it's race day and we don't have a flair up that day, we can go greater distances of "race pain" than our competitors. We are racing against them yes but also ourselves as well. I think with Lupus, recovery is most important. I see to many people let their disease or problem bring them down and crush them. Go for it Lupus people! Don't let it stop you or bring you down! Push your limits all the way to the finish line! Michael

Hey guys, I've had lupus for about 18 years, and at some stages get very sick, cant walk etc etc,
but i reckon solid training is the best thing for it. I'm a triathlete mostly olympic distance, but did a half ironman a few weeks ago. I'm flaring now (seems to have been triggered by case of the flu)but still doing active recovery type stuff.
I find that with lupus you have to make your changes in intensity and length etc in baby steps. Almost so your body doesn't realise it and over react :-)
Also have to be extra careful about getting colds, viruses when training heavily.
There a lots of annoying symptoms but i don't worry too much bout the small stuff.
It is so worth the effort :-)

Hi Everyone,

This is my first post to this site. I'm interested in what all of you are doing and have to say. I'm in the process of writing a book about my experience with Lupus and Exercise. I also find that there isn't much information out there. My guess is because so many people are afraid to exercise because of what mught happen to them. When I was first diagnosed in 2000, I had the same fear. I was a marathon runner and triathlete and training for the Las Vegas marathon when I got sick. After months of tests and seeing doctors, I was finally diagnosed with Lupus. I was told I may never run another marathon again.

After 9 months off from any exercise, I decided to start running again. The first mile I ran was horrible. I remember going out a half mile and starting to cry wondering how I would get home. But I did get home. Each day after that I slowly built up until I was able to complete the Pittsburgh Marathon in 2001.

Since that time I've completed 8 marathons, numerous triathlons, including 6 half ironmans and on November 7, I completed my first Ironman in 11 hours 45 minutes and 14 seconds in Wilmington, NC. Beach 2 Battleship 140.6. I won my age group and was 13th of all the women. I had a perfect race day despite the sinus infection I developed before the race.

Anyhow, I've kept very detailed logs and blood tests and medical reports over the past 4 years. What I have found, is that the more training I do, the healthier I get. My blood tests are better than they've ever been. So far I've recovered well from the race and started back to training again tonight.

I learned a lot over the past few years. Mostly that I have to listen to my body and know when to back down from my training. I also learned that I need to use my own training plan and do things differently from most endurance athletes. Mostly, I have to be extremely efficient in my training, get quality miles in, and focus always on how I feel so i know how to approach each day.

Through all of this I've learned to accept what my body can do and I've learned my limits, but I've also learned that with proper training, diet and adequate rest that anything is possible.

I know some people out there have Lupus so bad that exercising doesn't seem possible. My hope is through my book and through my website, Get Fit Families, that I can help people with Lupus and other diseases exercise again.

Through exercise i've been able to eliminate the depression I once had. i've come off the prednisone, I've learned to love my body again and the fatigue and joint pain I've experienced in the past can now be controlled.

I don't have Lupus, I was just diagnosed with a disease, but it's now up to me to make sure this diagnosis doesn't control me.

i think we all have a great deal to offer others and I believe triathletes are unique in themselves, but triathletes with Lupus are even more special.

Congratulations to all of you. I'd love to hear about your recent success stories and if any of you would allow me to publish your stories in my book, I would greatly appreciate that.

Sincerely,

Joella Baker
President
Get Fit Families, LLC