To close out the re-introductions- I’m Sammie Lewis, the final co-founder, physical therapist, and coach of Golden Endurance. And to people who don’t know my backstory- it appears like I’m a chronically injured runner, despite my professional expertise. Though I generally would identify as an ultrarunner, I haven’t actually ran an ultra in almost 3 years. But I haven’t been “injured” in the typical sense of the word, but rather dealing with multiple autoimmune disorders that drastically affect my ability to run, race, and more. The most severe of which is called ankylosing spondylitis.
What is ankylosing spondylitis (AS)?
AS is a type of inflammatory arthritis under the rheumatology umbrella. It’s a systemic disorder most known for causing excessive inflammation, erosion, and then fusion of the spine and pelvis. The end stage disease process involves complete fusion of the spinal column, colloquially known as “bamboo spine.” In reality it is a systemic disorder, meaning there are effects well past the skeletal system. Other common symptoms include extreme fatigue, irritation of tendons, finger swelling, and gut disturbances.
What does research say about training with AS?
Absolutely nothing. Realistically very little is known about most autoimmune disorders. And what research is out there is heavily focused on pharmaceutical management. How do I run 100 miles with anklylosing spondylitis isn’t exactly going to return any Pubmed results. So this is where we turn to anecdotal evidence- what have I found that seems to work for me? Over the last few years, I have had a lot of trial and error but have seemed to mostly come up with a few themes on how to train with AS, though most could be applicable for many autoimmune diseases.
My 5 pieces of advice for anyone trying to train while managing autoimmune disorders:
Give yourself some grace. Having a body that doesn’t always play by normal physiological rules takes a little extra flexibility. It may be harder to abide by a training “schedule” than most people due to unexpected flares or days that you simply feel awful. Acknowledging this and adjusting your schedule is going to be better in the long run than continuing to “push through.” Sometimes this just means switching a workout day with an easy day, sometimes it means completely skipping a workout. Doing more is not always better.
Nap when you need to and don’t feel bad about it. Extreme fatigue is a common symptom of many autoimmune disorders. This is different from a normal response to training or having a hectic work week where you feel tired but can still go about your day as usual. The brain fog of systemic fatigue hits you like a brick where basic functioning suddenly feels impossible. Having a simple conversation may take every ounce of energy you have. It’s these days that I’ve accepted that I need more sleep. Sometimes that means a two hour nap after sleeping for 10 hours overnight. And sometimes it feels ridiculous- like I’m just lazy. But just trying to push through usually just means that I get nothing done AND I’m miserable. Just take the damn nap. Your body is telling you you need it.
Find a cross-training activity (or multiple) that you truly enjoy. As much as I would love to run all the time, sometimes it simply isn’t an option. For me- there’s days (or weeks or months) where the impact just hurts too much. There’s no amount of love for running that makes up for having splitting pain through my pelvis or nerve pain down my legs. Though the exact reasons behind not always being able to run may vary between autoimmune disorders, the idea of having a low-impact cross-training activity can remain the same. The important part of this is that it’s not just for fitness, it should bring you joy and help soften the blow of not running.
Acknowledge that your recovery may not be as quick as others. Inherently, autoimmune disorders are dysfunctions of the immune system, which includes all inflammatory processes. Anything not working optimally in this system is going to have an effect on recovery. Remember- you don’t have “normal” physiology, you must adjust accordingly. Again this might mean you need more rest days, race less, or use more easy effort cross-training. It’s all about finding where your personal limits are and respecting them.
Finally and most importantly- don’t automatically give up what you love. You may have to do things a little differently, but being diagnosed with “blank” disorder does not necessarily resign you to giving up running. At my first rheumatologist appointment, the doctor gave me a pamphlet on my diagnosis. It stated how staying active was important, but also said, “don’t think that means you should be running marathons.” Considering there’s zero research on the correlation between AS disease progression and running marathons, I’d prefer them to keep their unvalidated opinions to themselves. Should you always talk to your doctor about the real risks of training with your particular issues? Of course. But usually it depends more on how you feel than anything. Don’t give up on the things you love just because “most people don’t do that.”
Comments