Lupus & Sports

Is there a such thing as "being too hard" on your body if you have Lupus? We are starting to think that sports is taking a toll on Caitlin's body. For the first time over the last 4 weeks, we've been seeing swelling over her knees, ankles, and sometimes her wrists and fingers. She started track about 6 weeks ago and this is when everything started "hurting" her. My husband and I are telling her that her "pain" is from track and maybe it is time for us to talk to the coach to have her sit out the rest of the season, but she is begging us not to. (We don't want to tell her it is possibly Lupus-related because we don't want her to worry about it.) She is actually doing hurdles and she is the fastest in her grade, even though she is only 4'9. (Don't ask me how she makes it over the hurdles because I have no idea...I even asked her if they make them lower for short people, lol!) She has also complained about 4 different times about her eyes "seeing funny things" so I am going to talk to her rhemy at the next appointment if we need to take her in for an eye check-up earlier than 6 months since she's been on the Plaquenil two months now.

The eye problem that plaquenil causes is loss of peripheral vision - thus the awfully boring test. I don't think plaquenil would cause anything she would describe as 'seeing funny things'.
Erica

Hmmm. Plaquenil can also cause color blindness and detached retina, among other things. It could be that she is seeing floaters, but it should be checked. Pauline, I'd call the eye doctor now, don't wait. She could be just fine, but if there are problems with Plaquenil, they should be addressed.

As for over-doing it, yes, definitely. I can't over-do or under-do or I'm in trouble. Over doing it would be painting a room or carrying something heavy (heavy to me is over 10 pounds). I spend days paying for that. Under doing it for me is something like jury duty, which I just got a notice for. I seriously cannot sit still that long or I get so stiff I can't move. I don't even go to the movies any more, haven't for five years.

I think it's great that Caitlin can still do those things since she seems able. I think it will help her in the long run if she can stay active. However, if she starts to suffer too much, it wouldn't be worth it. Swelling isn't good. I'd make a call to her doctor and see what she says.

Pauline - it just makes me sick that Caitlin is going through this. She's too young for this. I could just cry when I think of her. This is one of those times when life just isn't fair. I hope that she will be one of those people who gets a nice remission from all of this - it happens!

Erica-I asked Caitlin to clarify what she was seeing and she said its like zigzag lines or waviness at the corners of her vision and sometimes things are "off-color". It has only happened like 3 times and each time was about 20 minutes to an hour in duration.

Sandi-Thank you for your kind words. Really touches me and makes me feel like you truly care about her ans many others on this board! I will continue to think positive and not let anything get in her way, which is why I dont want to say anything. But if I am hurting her by not telling her things, then I will for the sake of her health. I just want her to be as active as possible for as long as she can endure it. I will call the rheumy to see if I need to move up her eye appointment. I am really worried about work now bec of all these cuts theyve made so I am not at a point now where I can ask for time off for more appointments. Our district let go 400 teachers last week and I know there's more to come so I need to prove that i am essential for them.

I don't know much about lupus and you should probably check with your doctor, but that sounds a lot like a migraine aura. I get migraines, but usually without an aura, but I saw zig-zag lights one night on the subway. It was a bit scary. I've seen it once or twice since then and I googled migraine aura and the first link that came up had an artist's drawing of the aura and it was exactly what I'd seen. They said that usually the headache comes 25 or 20 minutes later, but I didn't get the headache then, although I get it at other times.

en.wikipedia.org/wiki/Aura_%28symptom%29

en.wikipedia.org/wiki/Migraine

The first link is exactly what I saw. The second has other ways the aura can appear. Show these to Caitlin and see what she says. I'd still probably take her to the doctor, but this might put your mind at rest somewhat.

Lily

I was going to say the same thing. My son gets ocular migraines that are very similar. Zig-zag wavy lines, and he usually loses the vision in one eye for about 20 minutes. They can be scary, but are supposedly harmless. He would normally get them when he was overheated or doing something physical. Call and see what they say.

Sorry about the job cuts, I hope that ends!

Hmmm...maybe you are right, that they were migraines. It's just weird because she didn't get the headache afterwards, but Lily...you say you don't get the headaches so maybe that is all it is. I remember having this one time and freaking out because I couldn't see...and I went to my retinal specialist. I completely bombed the vision test because I couldn't read anything and then they became very concerned and did some type of test for uvetis (???) and put some dye in my eye and everything was normal. After all those expensive tests and concluding nothing was wrong, she said I must be experiencing an ocular migraine. Scared me because I've gone through 5 surgeries with retinal detachments so I thought it was happening again.

Caitlin is also a migraine sufferer but she gets the full-blown migraine pain with them and sometimes they last for days at a time. This has been a great year since she has not had any! Thanks ladies, this does make me feel better! I will still mention it to the rheumy when we go in about 3 weeks and then let her make the determination whether another appointment is warranted. I do have her eye appointment already scheduled for August sometime.

Hi Pauline,

I also get visual disturbances which sound like this and they've been diagnosed as being migraine related - I've never had any pain associated with it. My symptoms are that I get a flashing effect in the top right hand part of my vision (a bit like a small square of my sight being put on a loop and going round and round), sometimes accompanied by green or purple translucent blobs in the rest of my vision. Two or three times this has also preceded a period where I just can't see right, it has seemed like I can't focus or process the information my eyes are giving me. I've felt somewhat dis-connected from reality during these couple of episodes too.

I hope you get it sorted out - it must be a bit worrying.

Ali

Hi Pauline, it's interesting that you asked this question because I've been thinking about it a lot lately. Emmy is my daughter she's 14 and plays elite soccer. She has not been diagnosed with lupus, but is kind of borderline. All test are normal at this time except for ITP and ANA. Every time she plays I worry about it being too hard on her body, though she never complains. It is such a rough sport and it's very physically demanding. I wanted her to quite but she wont. Right now her platelets are at 200k from Rituxan last fall and she is doing very well. I guess I worry that she will pay for this later or that she shouldn't be putting her body through so much stress.
Shauna