I have systemic lupus. I was only diagnosed about a year ago, and I would guess that mine is relatively mild. It’s kind of nice having a diagnosis, as I’ve had different flare up over the years, without being able to ever pinpoint a problem. I first went in because I had a lot of muscular pain, that I thought was just DOMS and maybe I was overtraining. It would take me a week to recover from a fairly light session of weightlifting, and I was trying to follow a beginner’s triathlon plan but couldn’t keep up because of the pain. After a bunch of tests, the rheumatologist I first saw labeled it as an auto-immune disorder, and suggested I improve my diet and take CoQ10. He recommended a visit to a sports medicine doctor which resulted in the lupus diagnosis, and he basically reinforced the better diet idea. Like you say, nobody seems to know anything about Lupus and athletics. I’ve searched a lot too, but there doesn’t seem to be much out there. Some people think endurance sports make it worse, others think it helps. The sports doctor was interested in me as a special case, but he didn’t really have much to offer, honestly. I felt like the main character in Idiocracy when he visited the doctor…
Overall, my biggest adaptation has been improved diet. I take a “recovery meal” approach to pretty much every meal, and that seems to help a lot. My diet is pretty dull, and I just kept refining how I had been improving my diet before the diagnosis - slowly but surely cutting out crap, and I’m down to pretty much the same foods every day: no sodas, no caffeine, no drugs or alcohol, no fried foods, plenty of fruits and vegetables, a little bit more protein than the average endurance type, etc. I drink a lot of water, and try to eat as many “simple” foods as I can. I haven’t had fast food in a couple of years, and I avoid all the processed crap, artificial sweeteners, etc. I suppose some might say my diet is “semi-primal.” I take the CoQ10 (which does seem to help, but it’s kinda spendy), Omega-3s, and a joint supplement. I use ibuprofen when I hurt.
To complicate things, I had been laid off from my job shortly after my diagnosis, took a contractor job, but went almost a year without health insurance because I got turned down. I got it recently through my employer, so I am heading to the doc on Thursday to see if there is anything else that I should be doing. I ended up with another bout of pleurisy last week, after having the flu, and that’s a pretty typical setback - when I get hit with something, I get hit hard. My training has been kind of slow the last couple of weeks (mostly just running every day), which is unfortunate, as my first oly tri of the year is in a couple of weeks.
Training-wise, I’m learning to adjust to it and know my limits. Like my sports doctor said, we all have an overtraining threshold - mine is just different. I’ve been able to continue to slowly build my training up, and I’m in the best shape I have been in since the early 90s. I’m not going to be winning any races, and qualifying for Kona or Boston or anything like that is a pipe dream, but I have found a way to balance my training enough that I continue to get faster and can go longer. Fast twitch stuff kills me. I can’t do much weightlifting. I am not a speed demon, but can hold my pace for a while - my swim pace for a sprint is the same as it is for a half. I pay a lot of attention to recovery - diet, foam rolling, self-massage with the Stick, ice baths at times - whatever I can do to aid recovery. I did my first 70.3 last year, and if it weren’t for crashing on the bike (I still finished), I would have recovered pretty well - maybe a bit slower than a lot of people.
I honestly don’t know what this all means long term - I’m still really learning about the disease and how it affects me. I love doing triathlons, climbing mountains, hiking, trail running, canoeing, camping, and things like that, and it hasn’t prevented me from having fun.
Anyway, that’s my boring story. Sorry I got kind of long-winded. Good luck to your girlfriend - it sounds like she has a positive attitude and is active, and it’s great that you’re supportive!
