Running with Lupus

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“The blood tests indicate that you might have syphilis,” the doctor said. “I will need to run a few more tests.”

WTF!? I thought. “Syphilis?” I asked out loud.

“No, you misheard. You might have lupus.”

“Oh thank goodness! I can totally get down with that.”

My primary care physician and I still giggle about this exchange from early 2013. It was the middle of my four-year break from running, my hair was falling out, my arms and legs were breaking out in random rashes, everything hurt, and, as a result, I was sleeping for 10-12 hours a day and nothing could shake this feeling of utter crap. Initially, I just assumed that I was depressed. My job sucked, I was between programs at school, and my family was on the other side of the world. But after six months of feeling like garbage, I resigned to the fact that perhaps something was not right. Other than my hodgepodge of symptoms, I appeared in-person and on-paper like a healthy young twenty-something: resting HR below 50 beats per minute, normal blood pressure, I was carrying more weight than I probably should have been, no real biggie. A deeper look and my blood panels were telling an entirely different story.

But, lupus? Now what? Was running ever going to be the same?

What is lupus?

Lupus, or systemic lupus erythmatosus if you want to be fancy, is a chronic, autoimmune disease that can damage any part of the body, commonly the skin, joints, and/or organs. Typically it is a lifelong diagnosis and it is most often diagnosed in women between the ages of 15-44. In healthy individuals, the body makes plenty of antibodies to protect itself from foreign invaders, like viruses and bacteria. But lupus renders your body unable to discern between these bad agents and regular healthy tissues, essentially causing the body to attack itself, resulting in pain and inflammation where these attacks strike.

More than half of all people who develop lupus mention joint pain as their first symptom.

Living with Lupus

In some instances, being told that you have a chronic illness is what you make of it, but almost all of us go through the stages of grief. At first I wanted to crawl into my bed and never emerge again. Actually I did crawl into my bed for a period of time whilst still in the denial phase. Next came anger and depression: Why me? This is nonsense! (or other choice words). Followed by bargaining: well, if I cut out dairy and gluten maybe this will all go away and I’ll be fine. And finally came acceptance, time to move forward and make a plan of attack.

Some rheumatologists suggest diet modifications to patients suffering from autoimmune diseases. The most common suggestions are to reduce or remove gluten and dairy from the diet, as both of these cause some inflammation during the digestive process. While I couldn’t bring myself to go dairy-free (no ice cream!?), I reluctantly went gluten-free for one and a half years to get my symptoms under control. During that time I was able to wean myself off high doses of steroids and was able to ease back into running. As the miles increased, so too did my need for more sustenance, and what better way to get that than bread, pasta and other delicious gluten-y goodness? Thankfully, I was able to reintroduce gluten with no real problems.

I have also been fortunate in that I have responded very well to typical drugs used to treat many of the symptoms that accompany lupus. Plaquenil, a medication developed to treat malaria, is effective in reducing the joint pain and rashes (although doctors don’t actually know how). Besides the usual nausea and stomach upset related side effects, the most problematic (although rare) side effect of long term Plaquenil use is damage to the retina and macula resulting in vision impairments. Annual visits to the ophthalmologist can help to keep track of toxicity levels in the retina.

Another drug commonly used to treat the symptoms of lupus is prednisone, which is a different beast. You can find a list of sides effects here. Although prednisone is effective in reducing a lot of symptoms, the side effects are pretty horrendous and leave an already immunocompromised individual at an increased risk of further infection. On a slightly superficial level, prednisone left me with a terrible case of ‘moon face’ which is just as cute as it sounds.

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Ok, now the news you came to hear! For many living with lupus, a diagnosis is not a life sentence; there are many things that can be done to slow its course. Many specialists, including rheumatologist Dr. Robert J. Kipnis, recommend weight-bearing exercises as a way to prevent worsening of lupus symptoms. Running is a great way to help fight inflammation from chronic autoimmune diseases such as lupus and rheumatoid arthritis (more on that in a minute)!

Running with lupus

The biggest challenge with running with lupus is the stiffness and joint pain. Both of these things often improve throughout the day as my body warms up. This is typically not problematic. So long as you are not experiencing pain during or after a run, you are probably not hurting your joints. If either seems to worsen with running or is impeding you from running, that’s a good time to talk to your doctor.

For all of us, training is a balancing act of work and rest, but the rest is more crucial for those of us with lupus. Because of that, it’s incredibly important to keep track of rest days. We can’t get away with running our recovery runs too fast or adding in miles here or there. We must include adequate rest in our training plans. I have stupidly tested the limits of how long I can go without a day off, only to get hurt and spend a lot more time off than the initial one day that my body needed.

On that note, running is an awesome, high-impact activity and might not be suitable for all patients. You should not begin or return to a running schedule without double checking with a specialist.

What to do during a flare-up or setback?

Flare-ups, or flares as I call them, are usually accompanied by ongoing fever, swelling, rashes, ulcers, and painful joints. These are the pits. Thankfully, between medication and lifestyle adjustments, I have been able to keep flares at bay. Although I am usually one to try and push through many types of aches and pains, a flare is nothing to take lightly and requires one to chill out and rest. There is nothing to be gained from digging yourself into a deeper hole. I often struggle to dial things back, but was comforted when talking to Olive about her similar struggles with rheumatoid arthritis (RA). RA presents with many similar symptoms to lupus, and when it’s running its course there are times when we can barely stand, and running seems like forever away.

Although the exact cause of lupus remains at large, it is known that certain things can trigger the expression of a lupus flare:

  • Infections that cause extra stress on the immune system such as the common cold or flu
  • Emotional or physical stress
  • Exposure to sunlight
  • Pregnancy
  • Changes in medication
  • Alfalfa sprouts have also been linked to lupus flares, but for me this was fairly easy to cut out. These reactions are believed to be caused by the amino acid L-canavanine, which is in the seeds and sprouts.
Running with lupus is definitely possible!

Benefits of Running

Above, I mentioned that running can actually mitigate the symptoms of lupus!

  • Running makes you stronger and more flexible.
  • Running improves mental health. Between 15 and 60 percent of people with a chronic illness will experience clinical depression. Staying active can help to ward off negative emotions. Add to the mix that one of the most common medications used to treat lupus (corticosteroids) has been linked to depression.
  • Running improves your cardiovascular health, and we all need healthy hearts. Lupus or no lupus.
  • Running reduces fatigue.
  • Running counteracts some of the side effects of medication. Side effects from many of the medications can contribute toward a more sedentary lifestyle and in turn makes one more susceptible to osteoporosis. Weight bearing exercise is essential for maintaining healthy bones. Running can also help counteract the weight gain that often comes from steroid treatment.

Although working toward a Ph.D., I am certainly not a medical professional. I have, however, spoken with my rheumatologist and general care practitioner at length about many things running related. As of now, they see no reason why I can not continue to run and train for distance events, although ultras are probably off the table. Apparently I’m all good as long as I don’t end up with “runner’s brain.” I’m still trying to figure out what exactly that is – I hope they don’t mean an addiction, because I’m not quitting any time soon!

Do you have an autoimmune disease? Does running help you cope with it, or with any other condition or illness?

I am currently working on my Ph.D. in Cognitive Neuroscience while sipping on wine & coffee in Northern Virginia. Together with my husband and Rhodesian Ridgeback, Gracie we battle to keep the Tupperware cupboard organized for more than two days at time. I recently ran my first marathon (2:51) and am excited for what is to come. I like to ramble about running post injury, finding a work-life balance and running quickly.

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6 comments

  1. I admire you, Pesto! You have Lupus- and while there are some limitations you have to deal with, you’re totally on top of your game! You love running, and your sport is keeping you strong!

  2. Thank you, Pesto. I’ve been a Salty running fan for a while now, but after some recent blood work apparently I now may have cause to enter “lupus” into the search engine of the site. The wait times for rheumatologists around here are lengthy, but in the meantime this post gives me a lot of hope.

    1. I’m sorry to hear about your recent diagnosis. But yes – there is always hope! Honestly my symptoms have been SO MUCH better since getting back into running, it has really helped me.

  3. Happy to find this article! I have Mixed connective tissue disease which my mix includes lupus/fibro/interstital cystitis/Raynaud’s (and then more..). I absolutely love running but have to step very lightly as to not jam the joints in my feet and I go very very slow. Who cares how slow you go when you’re achieving 14 miles at the end of the day? Buying a hydration pack running vest was the best purchase… No more carrying water bottles! I have finished one marathon so far(full) and have a half marathon next month. I take plaquinil, arava and rituxan(chemo infusion) for the lupus along with tons of other meds unfortunately… Lung infections can make running tough but then again expanding the lungs prevents pneumonia so I try to push thru colds if I can. Getting nervous about this next race as it’s cold and early- perfect mix for a Raynaud’s attack (blue, numb feet and hands that can turn ulcerated). Raynaud’s has stopped my surfing but I won’t let it get to my running! Maybe hot hands taped to my shoes? LOL

    1. They actually make those hand warmers for your shoes, too! And definitely wool socks — they retain heat better especially when wet than other fabrics. It sounds like you’ve battled through a lot — good luck at your race!

  4. Hi, I’m Stacey and along with Lupus and MCTD, I have 5 other autoimmune diseases and I run. I have done 3 half marathons, and in 2018 I’m daring myself to do another, but I have not done a half since my diagnosis about 4 years ago. Long runs are hard on my body, and I’m hoping to find help on how to cope and get this next 13.1 done! I’m on plaquinil and a lot of other meds for my Raynauds, and other issues, but of course stiffness is my #1 killer. Any suggestions?