Physiotherapy can help people with Ehlers-Danlos syndrome (EDS), which is a group of disorders that affect connective tissues and cause symptoms that range from mildly loose joints to life-threatening complications. If you’re about to start a physical therapy program, here’s what you can expect.
Before your appointment
Make sure you’re well-rested and hydrated before your physiotherapy appointment. Don’t schedule an appointment at the end of the day when you’re likely more tired, for example. Wear loose-fitting clothing so that you can move around as easily as possible.
Have your medical insurance information, a list of any medications you take, and your primary physician’s physiotherapy referral with you. The physiotherapist may ask for emergency contact information, so have that ready as well.
If you use assistive devices or orthotics, such as splints and braces, bring them to your appointment.
Your first physiotherapy session
A variety of physiotherapeutic options are available for EDS patients. What your physiotherapist chooses will depend upon the affected area, the severity of your condition, and your symptoms.
During your first appointment, the physiotherapist will perform a thorough assessment of your condition. This will include evaluating any pain points and your capabilities, daily challenges, and goals.
Physiotherapists focus on prevention and rehabilitation. They can help you establish goals to relieve pain, treat an acute injury, strengthen joint-stabilizing muscles, or improve balance, posture, gait, or stamina.
Overarching goals include facilitating normal function in daily life and teaching you how to manage your condition as independently as possible and with minimal reliance on medications.
You will get a proposed treatment plan. Be sure to speak up if there’s anything about it you don’t understand. In addition to your one-on-one sessions, the physiotherapist may ask you to do exercises at home. Specifics will depend on your goals and needs, but make sure you understand these at your first appointment.
After the session
Compounding the fatigue you may already feel as a chronic EDS symptom, you may feel tired after your first physiotherapy session. Your muscles may be more achy. However, if you feel severe aches or pains, contact your physician and physiotherapist to make sure nothing is wrong.
Future physiotherapy sessions
Your physiotherapy appointments will likely last around an hour. The number of sessions you will receive will depend on your needs.
The physiotherapist will ask about your “homework” exercises and whether anything was too difficult or too easy. If you had trouble with any of the exercises, let your therapist know. It’s also important not to overdo it. For instance, resist adding more repetitions to what the physiotherapist assigns.
If you use supportive devices, your physiotherapist can help you to incorporate them into your daily routine. They can also advise you on what other equipment you might need.
Your physiotherapist will prepare regular progress reports that they will share with the prescribing doctor and you, so that you are aware of your treatment plan and progress throughout your experience.
Last updated: July 8, 2020
Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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