LEMS Ambassadors are compensated by Catalyst Pharmaceuticals, Inc. for the time they spend discussing their experiences with LEMS.
When first coming to terms with a Lambert-Eaton myasthenic syndrome (LEMS) diagnosis, it’s easy to focus on the new limitations imposed on you. Concerns about exercise and physical activities come to mind. Although you may need to adjust to how much physicality you are now capable of with LEMS, there are still ways you can maximize your exercise and physical activity regimen while combating weakness. One of our LEMS Patient Ambassadors has four tips to help you do just that.
Tescha, LEMS Patient Ambassador
I will admit that LEMS has impacted how much exercise and physical activity I can do, when I can do it, and for how long I can do it. And I’ll also admit it used to bother me a lot. That shift in my physical capabilities was not only a reminder of this condition I didn’t ask for, but it also prevented me from doing the exercise and activities that would make me feel healthier. But funny enough, the trick to making the most of my brawn was using my brain.
1 – Set realistic fitness expectations.
Nothing can derail your day faster than having overly ambitious expectations and then falling short. Comparing your current exercise routine or physical capacity to what they were before your diagnosis is neither helpful nor realistic. Instead, set manageable and practical expectations for what you’re able to do now and build from there.
Sometimes that means asking yourself, “Do I really have to exercise today?” Listen to your body, and if it’s telling you that it’s too tired, don’t push yourself. If you do, it’ll only make things worse.
2 – Plan your exercise routine around your body’s schedule.
As you navigate life with LEMS, you’ll know when you have the most energy and under what conditions you feel your best. Identify the days of the week and times of day when you’re at your best and plan your exercise then.
I know that late mornings and early afternoons are best for me, so I plan my most physically demanding activities around then. I also make sure I do simpler, easier tasks later in the day since they don’t require as much energy. It’s all about being efficient with your time.
3 – Ask for help.
If you’re anything like me, asking for help is hard. But we must accept that sometimes, the best way to help ourselves is to lean on others.
Before my diagnosis, I was used to doing lots of physical tasks on my own, like lifting heavy pieces of wood or building chicken coops. After my diagnosis, despite knowing better, I stubbornly tried to prove to myself that I could still do these tasks on my own. Well, I threw my back out, and it took me the whole summer to recover. A bruised ego hurts less than a bruised back! These days, I don’t hesitate to ask my teenaged son for help. Reach out for help when you need it—that’s what family and friends are for!
4 – Go easy on yourself if you don’t meet your goals.
All the tips and tricks in the world won’t help you avoid the fact that sometimes, you will fall short. It has happened to me plenty of times. But the key is to not beat yourself up over it. The sun will rise again, and tomorrow you’ll get another chance to take that jog, swim that lap, or ride that bike. But if you dwell too much on the disappointment of not achieving your goals, you’ll risk setting yourself back even further.
It’s a marathon, not a sprint, so just go easy on yourself and try to set yourself up for success next time.
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