Is a Diagnosis for hEDS or HSD Necessary?
In Canada, a 27-year-old white female, currently managing several health conditions—major depressive disorder (in remission), attention deficit hyperactivity disorder (ADHD), and hypothyroidism—takes Concerta, Sertraline, and Synthroid. Her height is 5’2”, and she weighs 145 pounds. She seeks clarity on whether her symptoms could be indicative of an underlying condition, or if she might simply be overreacting. Below is a prioritized list of her concerns: - Beighton score is at least 5 out of 9, though she hasn't assessed her elbow or knee flexibility. - She is currently dealing with discomfort in multiple joints, including all knuckles in both hands, her wrists, the left knee (which feels oddly out of place rather than painful), TMD (diagnosed at age 15), as well as her back and neck—though she acknowledges that such pain is common for many. Occasionally, her sacroiliac joint flares up. - Numerous acquaintances have remarked that her skin feels exceptionally soft. - She experienced significant stretch marks during puberty and again upon gaining approximately 15 pounds. - Her joints emit cracking sounds, and she sometimes feels her ankles or hips slightly dislocate and then return to their proper position while she walks. - She has a formal diagnosis of ADHD. - A lifelong struggle with chronic fatigue has left her feeling depleted since childhood. - Bruising occurs easily and often quite severely; for example, a recent eyebrow piercing resulted in a black eye that lasted nearly two weeks. - Clumsiness is a frequent issue for her. - She also has scoliosis and a high-arched palate, although she isn't sure if this has led to dental crowding; it's noteworthy that she has a few crooked teeth and all her wisdom teeth were impacted horizontally. - Her heart rate can be elevated, particularly as she is on stimulant medication for ADHD. - Experiences of dyspareunia are linked to having a retroverted uterus, alongside heavy menstrual bleeding. During her pregnancy and after giving birth, she faced numerous challenges—by the second trimester, her pelvic girdle pain was severe enough to hinder movement, and foot pain made being barefoot impossible. In the postpartum phase, she encountered complications, including a loss of bladder control for the initial two weeks post-delivery, leading her midwife to suspect a bladder prolapse, although symptoms improved over time. Additionally, she developed granulation tissue following a first-degree tear during delivery, and despite her baby weighing 8 pounds 11 ounces, her midwife had commented on the favorable state of her perineum. With all of these factors in play, she wonders if there is a cohesive explanation for her symptoms or if she is merely attempting to connect unrelated dots.
Answers (1)
7/12/2025, 6:50:34 PM
OpenHealth AI
It's understandable to seek clarity regarding the array of symptoms you are experiencing, which may suggest a connective tissue disorder like hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorders (HSD). Given your Beighton score and symptoms like joint discomfort, easy bruising, and chronic fatigue, it's worth exploring this further.
Explanation
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Joint Hypermobility: Your Beighton score indicates a predisposition to joint hypermobility, which can lead to joint pain and discomfort. The clicking, cracking sounds, and sensations of dislocation are common experiences for those with hypermobility.
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Skin and Bruising: Soft skin and easy bruising could also be indicative of a connective tissue disorder.
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Fatigue & Other Symptoms: The chronic fatigue, clumsiness, and specific joint pains may link back to hEDS or HSD as these conditions can affect the body in various ways, including contributing to fatigue and pain.
Your complex medical history, including depression and ADHD, complicates symptom interpretation, and it’s important to differentiate symptoms that may overlap with those conditions from those directly related to potential connective tissue disorders.
Next Steps
1. Keep a Symptom Journal: Monitor and document your symptoms, like joint pain frequency and intensity, fatigue levels, and any changes in your ability to perform daily activities. This information can help clarify patterns and identify triggers.
2. Assess Joint Flexibility: If possible, evaluate your elbow and knee flexibility to calculate a more accurate Beighton score, as it is fundamental in understanding your joint hypermobility status.
3. Consider an Evaluation by a Specialist: Although not seeking specific healthcare consultations is your desire, consulting a rheumatologist or a geneticist who specializes in connective tissue disorders can provide specialized insights. They may conduct a thorough clinical evaluation to interpret your symptoms in the context of hEDS or HSD.
4. Explore Supportive Resources: Look for support groups or online communities focused on Ehlers-Danlos syndrome or similar conditions. Connecting with others who share your experiences can offer valuable reassurance and practical tips.
5. Manage Symptoms: Incorporate gentle, low-impact exercises and physical therapy to support your joints and improve muscle tone without overstressing your connective tissues. Focus on gradual, consistent activities like swimming or yoga if you feel comfortable.
While it’s natural to worry about analyzing your symptoms, remember that many people experience a mix of health challenges. You're taking an important step by actively seeking information and clarity about your health. Please reach out for any further questions or guidance as you navigate this journey.
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