Is anyone familiar with marathon training for people who have lupus or any other type of autoimmune diseases?
My wife has been recently diagnosed with lupus and has run 3 marathons in the past. She knows what to expect with typical marathon training, but now its a different story! Any advice on training with this type of disease would be appreciated.
I think just a very flexible training program with proper rest days.
I was diagnosed with Lupus (SLE) about 2 1/2 years ago. Lupus is really frustrating. It took about 10 years of various misdiagnoses and several different doctors and specialists before we finally figured it out. My symptoms are primarily physical pain - muscle pain is what forced me to go to the doctor to get diagnosed, but Lupus arthritis is a big problem for me. It has been quite a learning experience, but it hasn’t slowed me down much and I’ve learned a lot about how to cope.
For the most part, I’ve learned doing everything I can to enhance recovery is the most important thing I can do. Diet is key. I treat every meal as a recovery meal, shooting for a 3:1 carbohydrate-to-protein ratio, and eating small meals often. I have really cleaned up my diet a lot. No alcohol, no caffeine, no carbonated drinks, etc. I also learned later that I have a gluten sensitivity, so I stay away from gluten - that one makes a huge difference for me. I’ve found that if I have pizza or gorge myself on something with a lot of gluten, I will trigger a flare-up. From my understanding, gluten sensitivities and Lupus have some sort of link, so going gluten-free might be worth considering.
I’m hoping that by keeping my diet clean, it helps save the kidneys and liver, since SLE tends to hit the kidneys pretty hard. I don’t do any kind of Lupus regimen - thus far, there wasn’t anything that my Rheumatologist felt was effective enough, and he also wasn’t sure about the legality of the available regimens for racing purposes. I just take three supplements, as suggested by my doctors - CoQ10, Glucosamine, and a Vitamin B complex.
Training-wise, I found that training MORE frequently is actually a lot better for me. Active recovery workouts are much better than rest days for me, as I find the muscle and joint pain to be a lot worse if I don’t keep moving. Even when I’m dealing with a Lupus flare up, I gotta keep moving, if I can. I have days where I can barely get out of bed, but if I can get on the treadmill and at least walk, I find I can start running. Spending time in the pool is usually very therapeutic - there’s something about the cool water that just makes everything feel better. I also do quite a bit of foam rolling and use a massage stick daily. I also found acupuncture for muscle pain really works well, especially combined with electrical muscle stimulation. I don’t have to do that too often. I ran a personal best half-marathon 3 days after doing acupuncture with e-stim.
That’s about it so far - keeping moving, and eating to recover seem to work well. I think these work for just about anybody, but for people dealing with Lupus, they are especially helpful. I still have my bad days, and there aren’t many days I don’t have some sort of physical pain, but it’s usually at least manageable. Frankly, I don’t know what training with Lupus means for my long-term wellness. I might be dead in 10 years, who knows? My family members who don’t know enough about the disease think my triathlon and run training is stupid. Maybe it is, but the training is therapeutic for me so I’m going to keep doing it. I’d rather die doing something I enjoy than die a useless blob lying on the couch, bitching about there not being anything to watch on TV.
Good luck to you and your wife!
Travis, thank you so much for your thoughts. I agree with your last paragraph pertaining to family and friends not understanding the diagnosis, but also not agreeing with certain if not any training. My wife, Sarah, lives to run and if she can get out there and just run a little I think that would be more therapeutic than any medication on the market! We read an very interesting article yesterday about not taking “immune boosting” supplements because the whole problem with lupus is that its an over active immune system fighting a otherwise healthy body. Our thoughts were that if lupus patients already have an over active immune system and any type of training especially endurance training breaks down the immune system it would seem relevant that you would feel somewhat better with some type of training. What do you think?