Ehlers-Danlos syndrome (EDS) is a group of inherited conditions mostly affecting the connective tissue in the body. These tissues help support the ligaments, tendons, blood vessels, skin and internal organs.
There are 13 different types of EDS most of which are very rare.
Hypermobile EDS (Type 3)
This is the most common type. People with this condition have bendy joints which can be loose, unstable or clicky. It is often known as being double jointed.
These joints also may dislocate or ‘sublux’ ( partially dislocate) easily. Some sufferers also feel that their pelvis ‘goes out’ regularly and they feel twisted.
There is often associated joint, back, pelvic hip and pubic pain. There are often systemic symptoms which include tiredness, easily bruised skin, digestive problems, dizziness (caused by postural orthostatic tachycardia syndrome -POTS) and problems with internal organs including mitral valve prolapse. There may also be difficulty with bladder control.
It often co-exists with Symphysis Pubis Dysfunction (SPD), Pelvic Girdle Pain (PGP), Post-Partum Pelvic Pain (PPPP) and Sacroiliac joint dysfunction (SIJD).
Diagnosis: There are no tests currently to confirm or refute the presence of EDS. The diagnosis is made mostly based on medical history and a physical examination.
Treatment of Hypermobile EDS (Type 3)
There is no cure for EDS but it is possible to manage many of the symptoms with professional advice and support.
Physiotherapy can help with exercises to strengthen and stabilise joints in order to avoid injury and manage the pain. Occupational therapy can help with daily activities with advice and equipment.
Counselling and cognitive behavioural therapy (CBT) can help coping with chronic pain along with techniques such as ‘mindfulness’.
Other treatment advice involves avoidance of activities which could put you at risk of injury but also it is important not to be too cautious and try to live a normal life.
Heavy lifting and contact sports may need to be avoided and you may be helped by wearing certain protective supports. Taking up swimming or Pilates can help. Pacing your activities can also avoid fatigue.
Once you have been diagnosed with EDS you may have completed the advised course of treatment described above, but are still struggling with pain and disability.
Dextrose prolotherapy injections have gained support over the years in Ehlers Danlos Syndrome (EDS) and they work in several ways:
- Hypertonic dextrose injections provide an irritation to the loose ligaments creating an inflammatory response resulting in thickening and strengthening (regeneration) of the ligaments.
- Dextrous prolotherapy also acts by neuromodulation in which the sensory pain pathways are dampened down.
- The injections have a type of acupuncture/needling effect on pain pathways.
- The local anaesthetic included in the injections can help dampen down neuro sensitisation which happens as a result of pain receptor stimulus over a long period of time.
Therefore prolotherapy injections can help in several ways and are usually administered on 3 to 6 separate occasions with very rare chance of any side-effects. Some of the injections are best done under ultrasound or x-ray guidance to locate the correct ligaments and improve the safety of the injections. This testimonial is an example of how prolotherapy can help:
I decided to have Prolotherapy as I have Ehlers Danlos Syndrome with joint hypermobility and suffer with a lot of pretty severe musculoskeletal pain.
Blackberry Clinic and Dr Petrides came highly recommended. I contacted the clinic who were extremely helpful and answered all my questions. I decided to commence my treatment with spinal injections.
My treatment consisted of 3 sets of spinal injections over the course of a number of weeks. Both Dr Petrides and Nurse Yvonne were absolutely brilliant throughout. Dr Petrides performed a consultation prior to each set of injections and was very good at explaining the mechanisms within the back and how these could be improved.
I have definitely seen a noticeable improvement in the stability of my back and my back pain. I will be returning to the clinic for further injections at some point in the future in order to improve stability further. I will also be having injections in other joints to improve my stability and pain.
The clinic was extremely helpful with guiding me through the whole process. I couldn’t have had a better experience and would definitely recommend this to anyone who’s dealing with joint hypermobility, pain, instability and/or injury.
Patient of Dr Simon Petrides 2019
Classical EDS
This is less common and tends to affect mostly the skin. The skin becomes very stretchy over the forehead, knees, shins and elbows. There is also joint hypermobility and poorly healing wounds.
Vascular EDS and Kyphoscoliotic EDS are extremely rare.
Advice and support for people with EDS and their families can be sought from Ehlers-Danlos support UK free helpline on 0800 907 8518
Or the Hypermobility Syndromes Association (HMSA) helpline on 0333 011 6388.
Dr Simon Petrides MB BS DM-SMed Dip Sports Med DO PGCert FFSEM(UK &I)
Musculoskeletal & Sports Physician
Blackberry Clinic Group Ltd
