The best treatment approach for any connective-tissue disorder with hypermobility is one that’s integrative and personalized. “There is so much variation in patients with hEDS or HSD, so treatment really has to be individualized,” says Dacre Knight, MD, medical director of the Mayo Clinic’s Ehlers-Danlos Syndrome Clinic.
Linda Bluestein, MD, a physician who specializes in hEDS, uses the acronym MENS PMMS to describe her treatment protocol: movement, education, nutrition, sleep, psychosocial support, modalities (such as acupuncture, massage, and cranial sacral therapy), medications, and supplements. “It’s very intentional that medications come after a lot of these other things,” she notes.
Oral medications often bring side effects, Knight adds. “We want to find things that are more sustainable because this [condition] is something that could potentially be long-lasting.”
Because there are few hEDS and HSD specialists, many patients cobble together their own care team. “You don’t necessarily need to have a primary-care provider who’s an expert in hypermobility,” Knight says, but having a physical therapist literate in the condition is necessary, “because that’s a mainstay of treatment.”
A physical or occupational therapist who’s knowledgeable about hEDS and HSD can be helpful with arranging work accommodations, notes Patty Stott, DPT, ATC, CHT, who works with hypermobile patients in Arvada, Colo. They can design gentle strategies to improve alignment, muscle activation, and neuromuscular control while calming pain reactions.
“Safe, well-tolerated activity is very important. We need to keep the body strong and the mind happy, and physical activity helps with that,” she adds.
There are no hard-and-fast rules about which types of exercise are appropriate for people with hEDS or HSD. Yoga, Pilates, and aquatic exercise may all be helpful if done correctly and with respect for an individual’s limitations.
Still, Bluestein notes, “you have to move better before you move more. I encourage people to work with a physical therapist or Pilates instructor who can really look at your movement patterns and prescribe specific exercises for you.”
A nutrient-dense diet is likewise key for reducing inflammation, says Bluestein, though the specifics may vary from person to person. Some general principles include minimizing sugar and preservatives and increasing hydration. Some may benefit from watching their histamine intake or eliminating gluten or dairy.
“In some cases, I’ll prescribe a temporary elimination diet,” she notes. “But I really encourage people to get in touch with their body with a curious mindset and not tap into that anxious part.”
For people with hEDS or HSD, the main goal of treatment is stabilizing the body’s systems.
“They have to eat well; they have to move well; they have to recover well. They have to moderate their stress levels and really live in this happy medium,” Stott says. Supporting the nervous system, calming neuroinflammation, minimizing toxic inputs, and managing other health conditions can make a big difference in quality of life.
“Everybody has room for improvement, no matter where they’re starting from,” she adds. “With this diagnosis, you’ll have to be treated as an individual. If that’s done, you can have amazing results.”
This was excerpted from “What Is Connective-Tissue Disorder?” which was published in Experience Life.
This Post Has 0 Comments