being diagnosed much more rarely.<\/span><\/p>\nHSD more broadly describes connective tissue disorders causing joint hypermobility and instability; some people are diagnosed with HSD when they don\u2019t meet all of the diagnostic criteria for EDS. While this piece is largely based on my experiences with EDS, many of these insights will apply to those with HSD as well.<\/span><\/p>\nSome people living with EDS go through life with minimal symptoms and little pain. Others are faced with a wide range of symptoms and complications.<\/span><\/p>\nClinical manifestations of EDS are most often joint- and skin-related and may include:<\/span><\/p>\n\n- Joints:<\/b> Joint hypermobility (extreme flexibility) and hyperextensibility (movement beyond the joint\u2019s normal range); loose or unstable joints that are prone to frequent dislocations and\/or subluxations; joint pain.<\/span><\/li>\n
- Skin:<\/b> Soft, velvety skin; skin hyperextensibility (stretchiness); fragile skin that tears or bruises easily or severely; severe scarring; slow and poor wound healing.<\/span><\/li>\n<\/ul>\n
Other symptoms, which can vary by subtype, include chronic, early-onset, debilitating musculoskeletal pain; fatigue; scoliosis or neck instability; and mitral valve prolapse. Less common symptoms or complications associated with rare subtypes can include arterial, intestinal, or uterine fragility or rupture; scleral fragility; poor muscle tone; and gum disease.<\/span><\/p>\nDue in part to the fact that the connective tissue impacted by EDS is widespread throughout the body, there are a number of associated disorders people may deal with, including postural orthostatic tachycardia syndrome (POTS) and other types of dysautonomia; mast cell activation syndrome (MCAS); Raynaud\u2019s disease; early-onset osteoarthritis; autoimmune conditions; migraine and other headache disorders; a number of gastrointestinal disorders; gynecologic conditions; Chiari I malformation; craniocervical instability; tethered cord syndrome; and more.<\/span><\/p>\nEDS is often misdiagnosed as fibromyalgia, osteoarthritis, rheumatoid arthritis, lupus, multiple sclerosis, myalgic encephalomyelitis\/chronic fatigue syndrome (ME\/CFS), or Munchausen syndrome or other psychiatric disorders. To complicate matters further, it is possible to have both EDS alongside one or more of most of these disorders.<\/span><\/p>\nHow is EDS Diagnosed?<\/b><\/h2>\n
While a number of providers or specialists, including general practitioners or rheumatologists, may be initially involved in identifying or suspecting EDS, a confirmed diagnosis is often obtained by a geneticist familiar with the disease, as our symptoms can vary significantly.<\/span><\/p>\nFor some types of EDS, a skin biopsy to determine the chemical makeup of the connective tissue can help to suggest the diagnosis.<\/span><\/p>\nGenetic testing can also help identify most subtypes of EDS\u2014but not hEDS, the most common type. Geneticists often diagnose hEDS after ruling out other types.<\/span><\/p>\nFor some, the diagnosis of EDS is based upon the patient\u2019s clinical findings and family history. However, while family history is key in helping diagnose EDS, particularly when genetic testing can\u2019t help, the National Institutes of Health (NIH) has found patients who were born with EDS with no family history. And due to the difficulty of receiving a diagnosis, some people are the first in their family to be diagnosed.<\/span><\/p>\nAfter receiving a diagnosis of EDS, you can work with your providers to find the best ways to manage the disease. These are some of the tips I have learned.<\/span><\/p>\nMaintaining Physical Activity<\/b><\/h2>\n
When you live with chronic pain, you can get emotionally and physically worn down, and you may sometimes feel that you have no energy to exercise.<\/span><\/p>\nBut living with EDS makes it all the more important to do just that. We need to keep our muscles strong to help support our joints, and cardio workouts also help keep our bodies in the best shape possible.<\/span><\/p>\nConsider the stationary bike, walking when you\u2019re able, and swimming. The <\/span>Muldowney Protocol<\/span><\/a> is often cited as being helpful for those with EDS.<\/span><\/p>\nControlling Blood Pressure and Heart Rate<\/b><\/h2>\n
Many of us live with lower blood pressure and\/or higher heart rates than normal. There are a few things that I have found to be very helpful for this:\u00a0<\/span><\/p>\n\n- Drink plenty of water.<\/span><\/li>\n
- Elevate your bed frame at your head to 30 degrees.<\/span><\/li>\n
- Salt your food, or add salt or electrolytes to your drinks, which can help with dizziness and lightheadedness. Not all types of salt or electrolytes are the same, so it\u2019s best to do your research and check with your provider.<\/span><\/li>\n
- Don\u2019t get to the point of passing out and doing damage. If you feel the self-management strategies listed above are not working, see your provider or a cardiologist to discuss additional strategies or medication.<\/span><\/li>\n
- In some cases, it may be recommended that someone with EDS has regular echocardiograms to test the heart\u2019s function.<\/span><\/li>\n<\/ul>\n
Addressing Orthopedic Issues\u00a0<\/b><\/h2>\n
Arch supports are another tool that can be helpful, as many of us deal with flat feet.<\/span><\/p>\nIf the strategies you use to manage joint pain and dislocations or subluxations aren\u2019t enough, your providers may recommend surgery.<\/span><\/p>\nWhile a patient\u2019s own tissue is sometimes used in surgeries to repair another area, the connective tissue defects from EDS make your ligaments and tendons weaker. Talk to your surgeons about using <\/span>cadaver tendons<\/i><\/b> instead to help hold your bones in position.<\/span><\/p>\nManaging Inflammation<\/b><\/h2>\n
Our bodies\u2019 reactions to certain substances or irritants can lead to inflammation and increased symptoms. I\u2019ve found it helpful to pay attention to the following:<\/span><\/p>\n\n- Food sensitivities:<\/b> A food sensitivity blood test can offer tremendous assistance in reducing reactions and inflammation. Find a knowledgeable dietitian to guide you.<\/span><\/li>\n
- Drug sensitivities:<\/b> A DNA drug sensitivity test can help determine if certain medications are safe for you and can be properly metabolized.<\/span><\/li>\n
- Candida overgrowth:<\/b> We can be more prone to these yeast or fungal infections, which can be triggered by certain foods or medications, stress, or skin or gut issues. A blood or lab test can diagnose an infection, which can be treated with medication.<\/span><\/li>\n<\/ul>\n
Caring for Your Mind<\/b><\/h2>\n
Following your diagnosis, take time to grieve. It\u2019s OK and necessary to allow yourself to mourn the loss of your past life. Life will move on, but it will never be exactly as you have known it.<\/span><\/p>\nTry to live with hope.<\/span><\/p>\nTry to live with purpose.<\/span><\/p>\nTry to be proactive.<\/span><\/p>\nTry to keep your mind as sharp as possible.<\/b> These are some of my favorite ideas:<\/span><\/p>\n\n- Reading<\/span><\/li>\n
- Writing<\/span><\/li>\n
- Advocating<\/span><\/li>\n
- Adult coloring<\/span><\/li>\n
- Sudoku<\/span><\/li>\n
- Word scrambles<\/span><\/li>\n
- Crossword puzzles<\/span><\/li>\n
- Music<\/span><\/li>\n
- Puzzles<\/span><\/li>\n
- Sewing<\/span><\/li>\n
- Painting<\/span><\/li>\n<\/ul>\n
Tending to Your Spirit<\/b><\/h2>\n
Many of us have experienced our friendships diminishing, due to either being judged for looking fine, or just not being able to keep up with activities with our friends.<\/span><\/p>\nI have found, especially when recovering from surgeries, that my contacts in life become very limited. It\u2019s hard for others to understand that we still need friends.<\/span><\/p>\nTry to not get isolated, even though it\u2019s difficult. Look for new ways to stay connected. Find a local or online support group, or connect with others who are also trying to learn to cope with chronic health issues.<\/span><\/p>\nSimple acts like visiting a rehab center or nursing home, and reaching out to others also struggling, can help give you a better perspective on your life.<\/span><\/p>\nTry to remind yourself each day of things you are grateful for.<\/span><\/p>\nMay life be kind to you and give you strength\u2014you can do this!<\/span><\/p>\n\u2014by Ellen Lenox Smith<\/span><\/i><\/p>\n<\/div>\n