Lupus & Exercise

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