When you have an autoimmune disease like Sjogren’s and you’ve heard your doctor tell you for the umpteenth time that you really need to exercise, you kinda just want to punch them in the face.
You don’t, of course, because that would hurt. But you get exasperated trying to explain how the hell you’re supposed to exercise with your constant pain and fatigue. You start to wonder what kind of sadistic, uncaring cyborg you have for a doctor.
That’s why I love my rheumatologist.
Because when we had that talk recently after my steady increase in weight and no reduction in my pain, she actually listened and understood.
She understood how stressful and busy it can be when you’re trying to work full-time while also trying to beat back this monster of an autoimmune disease which is always perched there, ready to pounce, when it senses a momentary weakness.
She suggested the usual exercises:
- t’ai chi
She also suggested something unusual: physical therapy.
Not because I was necessarily having mobility problems, but just so that a few times a week I would be guaranteed some time to move my body.
I assured her I would get my act together and recommit to my yoga practice and eating better, and if I wasn’t on top of it by my next appointment, we’d go ahead with physical therapy.
I wanted to prove to myself that I could still do this.
And she respected that, and agreed. Truly, I was touched by how much she cared and earnestly wanted to help me. She was thinking of anything that could make my life just a bit easier. I know I’m lucky to have a doctor like her.
For people living with Sjogren’s, they’re lucky to have Dr. Sarah Schafer.
Not only is she a doctor, she is also a person living with Sjogren’s and POTS. So she understands what it’s like to live with the pain, fatigue, and flu-like malaise of Sjogren’s, and also the difficulty of exercising when POTS makes it so hard to be upright.
As a doctor and a patient, she knows how to explain the importance of daily exercise, even on those fatigue heavy days. You just have to be careful not to overdo it.
Dr. Schafer swims every day–and acknowledges that she’s lucky to live in California where the weather allows swimming outdoors all year long. Indoor pools, she says, are too warm for her POTS.
The big benefit of swimming is that it’s a horizontal exercise, thus minimizing the impact of POTS. Though, she does walk in the mornings on her good days to fit in some weight bearing exercise, too.
One thing she points out is that, for her, making sure she does intervals of harder exercise to get her heart rate up is key to combating POTS symptoms. Though, ever the cautious doctor, she does remind people to always talk to their doctor before starting any sort of exercise routine!
While she aims for 25-35 minutes of exercise every day, she acknowledges that some days (we all know those kinds of days) she might go for a max of 15 minutes.
And that’s ok.
What’s important is making exercise a habit, and a little bit is better than none. And overdoing it and not listening to your body is a recipe for disaster–namely a flare.
So if you’re struggling with Sjogren’s and/or POTS fatigue, consider swimming, with intervals of extra effort to get that heart pumping!