Ehlers-Danlos Syndrome (EDS) and joint hypermobility are often associated with a range of comorbid conditions, many of which can complicate the management and quality of life for those affected. Common comorbid conditions and the type of specialists to see for each include:
- Mast Cell Activation Syndrome (MCAS): A condition where mast cells inappropriately release excessive amounts of chemicals, leading to allergic-type reactions, including life-threatening anaphylaxis. The specialist to see is an immunologist/allergist with an expertise in mast cell disorders.
- Dysautonomia: A group of conditions resulting in abnormal functioning of the autonomic nervous system, which can include POTS as well as other forms of autonomic dysfunction. Specialists to see include autonomic rehab, cardiologists, and/or a PM&R expert in long Covid.
- Postural Orthostatic Tachycardia Syndrome (POTS): A form of dysautonomia that affects the autonomic nervous system, leading to an abnormal increase in heart rate upon standing. The specialist to see is a cardiologist with expertise in POTS.
- Gastrointestinal Disorders: This can include conditions like irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD), and gastroparesis, among others. See a gastroenterologist.
- Chronic Fatigue Syndrome (CFS/ME): A complex disorder characterized by extreme fatigue that doesn’t improve with rest and may worsen with physical or mental activity. It is challenging to find the right care. Some find rheumatology, or PT/OT to be helpful in reducing pain and returning to a better quality of life.
- Temporomandibular Joint Disorders (TMJ): Conditions affecting the jaw joint and surrounding muscles, which can lead to pain, difficulty in chewing, and other complications. An expert dentist who understands the complexities of the jaw as it relates to facial muscles, etc.
- Chiari Malformation: A condition where brain tissue extends into the spinal canal, which can cause headaches, neck pain, and other neurological symptoms. A serious disorder to be evaluated by an expert neurosurgeon.
- Spinal Instability: Conditions such as atlantoaxial instability or craniocervical instability, where the joints in the upper spine are unstable, can lead to neurological symptoms. A common and significant disorder to be evaluated by an expert neurosurgeon.
- Sleep Disorders: Including insomnia, sleep apnea, and restless leg syndrome, often exacerbated by pain and autonomic dysfunction. See a sleep doctor to conduct a sleep study.
- Anxiety and Depression: Mental health challenges are common due to chronic pain, fatigue, and the complexities of managing multiple health conditions. This is complex and can be treated with biopharmacology prescription drugs approaches in addition to general wellness, somatic therapies, and more. If you believe you need medication to manage it, see a psychiatrist for RX, and a therapist, counselor, or psychologist for other types of therapy, including talk therapy or cognitive behavioral methods. Some patients have found help in progressive new treatments including EMDR, TMS, DBT, EFT, and many more worth learning more about.
- Pelvic Floor Dysfunction: This can include urinary and fecal incontinence, pelvic pain, and prolapse. This is typically done by a physical therapist or can be facilitated by a pilates instructor who is willing to teach you how to build core strength.
- Osteoarthritis: While usually a condition of aging, it can occur early in people with EDS due to joint hypermobility and repetitive joint stress.
- Cardiovascular Issues: Such as mitral valve prolapse, aortic root dilation, or other connective tissue-related heart conditions.
- Chronic Pain Syndromes: Widespread chronic pain, often linked to hypermobility, joint dislocations, and associated conditions like fibromyalgia, which we are often misdiagnosed with by unaware providers. Be cautious with a pain management specialist to ensure you are well informed of all the benefits and risks of any given treatment, as addiction is a serious secondary condition you could develop in response to drug treatments.
- Scoliosis and Kyphosis: Abnormal curvatures of the spine, which can be more pronounced in those with connective tissue disorders.
These are some of the more commonly found comorbidities that often require a multidisciplinary approach to treatment, focusing on managing symptoms and improving quality of life. If your symptoms fall outside of these disciplines, remember EDS is on a spectrum and individualized for each patient based on history, injuries, viruses in the past, etc. No two patients are alike, contributing to the diagnostic challenge.