Best 5 Exercises for Ehlers Danlos Syndrome
Ehlers Danlos syndrome is a grouping of inherited disorders affecting the connective tissues, such as that of the skin, blood vessel walls and joints. Connective tissues are a complex mixture of various substances and proteins that provide elasticity and strength to all of the underlying structures within the body.
In the simplest of terms, EDS is a hypermobility condition, making the joints hypermobile and lax. Prevalence is around 1 in 5000. However, 5 other forms of EDS exist including “Classical, vascular, kyphoscoliosis, athrochalasia, and dermatospraxis”. The last three are extremely rare.
Those with Ehlers Danlos syndrome have overly flexible joints and skin that is both stretchy and fragile. This can be problematic for ligament laxity, joint pain, stability, and even wounds that require sutures if the skin is unable to hold them.
In severe cases, the walls of the intestines, blood vessels, and uterus can rupture. Bowel and bladder control may also be affected as the muscles controlling the sphincters become weak. Eye sight might also be affected, as the muscles around the eyes can become weak. Before deciding to start a family, it is essential to consult with a genetic counsellor or request your GP to refer you to a specialist rheumatologist. Experts in Elhers Danlos may be hard to track down.
Ehlers Danlos Syndrome Anatomy
This syndrome is a rare group of inherited disorders, caused by a genetic mutation, affecting the proteins supporting the bones, skin, joints, internal organs and blood vessels. The syndrome is often grouped into six main types of the condition. Even though there isn’t a cure for the condition, the symptoms can be managed and prevent any further injury to the joints, internal organs and skin.
As most EDS is categorized by hypermobility, symptoms typically include being double jointed, or having very loose joints. Typically, these joints are prone to sprain, such as repeated ankle sprains, or other subluxations or possibly even dislocations. Skin can be fragile, susceptible to bruising, or hyper-elastic.
There is currently no genetic testing available for hypermobile EDS, as no gene has yet been identified.
Beighton’s criteria is used to assess the degree of hypermobility:
- Can you bend your little finger backwards beyond 90 degrees? Score one point for your left little finger, and another point for your right little finger. Total = 2 points.
- Can you straighten your elbow beyond 10 degrees backwards? Score one point if your left elbow bends backwards beyond 10 degrees, and another point for your right elbow. Total = 2 points.
- Can you bend your thumb back onto your forearm? Score one point for each side. Total = 2 points.
- Can you lock your knees out and hyperextend them beyond 10 degrees? Score one point each side if you can. Total = 2 points.
- Can you bend forwards and place both hands flat on the floor? Score one point.
Total points = 9.
Depending on how many points you score will show you the level of hypermobility in your body, with a 0 or 1 being generally quite stiff (stable), and 7-9 being very mobile (hypermobile/unstable). Any score above 4 is a sign of hypermobility but may not necessarily mean you have EDS.
Research for EDS
Recent research published in the Journal of Investigative Dermatology identified a genetic mutation that may be responsible for certain types of EDS. Researchers discovered that mutations in the COL3A1 gene can result in vascular Ehlers-Danlos Syndrome (vEDS), characterised by fragile blood vessels and an increased risk of organ rupture. This discovery could improve the accuracy of EDS diagnosis and inform the development of new treatments for this disorder.
Another recent Journal of Rheumatology study examined the effect of EDS on quality of life. Compared to individuals without EDS, individuals with EDS had significantly lower scores on measures of physical and mental health, as well as social functioning. The importance of early diagnosis and effective treatment of EDS to improve the quality of life of those affected by this condition is highlighted in this study.
A recent review published in the Journal of Pain and Symptom Management assessed the efficacy of various interventions for the treatment of chronic pain in EDS patients. Multimodal treatment approaches, including medication, physiotherapy, and psychological interventions, were found to be the most effective at reducing pain and enhancing quality of life in EDS patients. In addition, the review revealed the need for additional research into the long-term effects of these interventions for EDS patients.
Another recent study published in the Journal of the American Academy of Dermatology examined the use of botulinum toxin injections as a treatment for chronic pain associated with EDS. Injections of botulinum toxin were found to be effective in reducing pain and enhancing the quality of life in EDS patients. To determine the optimal dosage and frequency of botulinum toxin injections for EDS patients, the researchers noted that additional research is necessary. The problem is with botox is that it does not last long. Do we think this is effective? Probably not.
Best 5 Exercises for Elher’s Danlos Syndrome:
1. The Dart
Adopt the prone start position. Lengthen the back of your neck, and find a neutral pelvis. Rest your forehead on a small cushion, lengthening your arms by your sides. Inhale as you lengthen the crown of your head and lift your forehead and chest off the floor. Keep your lower ribs in contact with the floor, the chin tucked and the back of the neck lengthened. Lengthen your arms away and lift them slightly as you turn your palms in towards your body. Inhale as you hold this position. Exhale as you return sequentially to the starting position. Hold this position for up to 1 minute, three times in total.
Adopt the supine start position. Float both legs into the table top position, one leg at a time connecting inner thighs. Exhale and peel the back of your head, neck and upper back from the floor. On your next exhale, reach both legs upwards to straighten your knees and take them into a diagonal position while lengthening and hovering both arms from the floor, moving them up and down in pulsing movements inhaling for 5 pulses and exhaling for 5 pulses. As you exhale, slowly return to the start position. Maintain a neutral pelvic alignment and keep your centre engaged.
3. Shoulder Bridge
Adopt the supine start position. Bring your heels slightly closer to your bottom to reduce the stress on your hamstrings. Exhale as you tilt your pelvis back underneath you, pressing your lower back into the floor. Slowly roll your spine off the mat one vertebra at a time to the tips of your shoulder blades. Hold this position as you inhale. Exhale, rolling the spine back down, one vertebra at a time. Make sure you keep your weight equal through both feet. Repeat 10 reps, three times.
4. Shoulder Bridge Advanced
Start position is shoulder bridge level one, with a neutral pelvis and the spine rolled away from the mat. Inhale to prepare, exhale to lift one leg into a table top position with your hip at 90 degrees and knee at 90 degrees. Avoid tilting your pelvis from side to side. Inhale as you replace your leg down, ready to repeat on your opposite leg. Exhale, as you roll your spine down vertebra by vertebra to finish. Repeat 10 reps, three times.
5. Oyster (Medium Level)
Adopt the sidelying start position on your right side, and lengthen your right arm out underneath your head, in line with your spine. Lengthen your left waist curve, so your side does not collapse into the floor. Place your left hand in front of your chest flat on the floor, bending your elbow to support you. Bend both knees in front of you, drawing your feet back in line with your pelvis. Float both feet 2 inches above the floor keeping your heels connected. Inhale to prepare, and exhale as you open your top knee, keeping your feet connected. Inhale as you control your leg back to the start position. Repeat 10 reps, two times each side.
EDS is a horrible condition to have. We’ve seen several patients with EDS see us at Surrey Physio. If you do need treatment, please call us so we can direct you to the most appropriate person. Kay, Niamh, Lucy and Federica are ideal help for you but we have other staff too who can help.
If you are a therapist and liked some of the exercises on this page, please go to www.rehabmypatient.com. We use it across 200+ clinics and 140 staff. It’s amazing. If you are a patient, please call us on 0208 685 6930 or click the book online link at the top of the page.