Seeking Guidance on Managing Hypermobility During Consultation Wait
I’m a 22-year-old assigned female at birth (AFAB) and currently navigating a number of health challenges, including Type 1 Diabetes, chronic pain and fatigue, scoliosis, and asthma. I also deal with gender dysphoria, autism, ADHD, and complex PTSD. My management plan includes the use of a closed-loop insulin pump, a daily regimen of 100mg lamotrigine, as well as weekly IM testosterone injections (0.8mg), along with gabapentin, Benadryl, and over-the-counter non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen, aspirin, and Tylenol as needed for pain relief. While my medical team suspects that I have additional conditions, I’ve been referred for an evaluation for Ehlers-Danlos syndrome, with the appointment scheduled for October. This specific concern is the primary reason I’m reaching out today. I began physical therapy in April due to persistent back pain, which led to the discovery that I have hypermobility. After some initial assessments, I received my referral for the upcoming evaluation. Although physical therapy has been beneficial to some extent, I face challenges due to limited session availability compounded by insurance constraints. My therapist has advised that I decrease the frequency of using my joint braces and stabilizers for my knees to enhance my muscle engagement. There are times this approach works, but I also find myself re-injuring my knees, causing me to revert to using stabilizers, especially at my job where the risk is higher. Recently, my right knee has become increasingly troublesome, with issues in maintaining alignment and frequent dislocations due to minor movements. I’m hesitant to over-rely on my braces, fearing a setback in my therapy progress, yet I'm at a loss for alternative solutions while fulfilling work obligations and daily errands. I've utilized a significant portion of my physical therapy sessions for the year, and my therapist is fully booked for the foreseeable future. This fall, I’ll be returning to school to pursue a career that accommodates my health needs, as physical labor in particular has proven challenging for long-term employment. Are there specific supplements, techniques, or tools I could incorporate to assist with managing my hypermobility alongside my physical therapy exercises? Additionally, what questions might be beneficial to pose to my healthcare team? I would greatly appreciate any guidance or advice on this matter.
Answers (1)
8/10/2025, 9:31:05 PM
OpenHealth AI
It sounds like you're dealing with a complex array of health challenges, and managing hypermobility in the context of your existing conditions can indeed be difficult. Let’s focus on practical steps you can take to better manage hypermobility while preparing for your upcoming evaluation.
Main Points
You want strategies to manage hypermobility, especially around your knees, while working and continuing physical therapy. It's also important to consider how you can engage your healthcare team effectively.
Explanation
Hypermobility can lead to joint instability and increased risk of injury, so it’s understandable to feel concerned about maintaining balance between support and progress in therapy. Your body needs strength and stability but must also avoid dependency on braces. Here are some strategies that may help:
Specific, Prioritized Next Steps
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Strengthening Exercises: Work on controlled strengthening exercises that target the muscles around your knees. Focus on low-impact activities like cycling, swimming, or specific resistance exercises that your therapist can recommend. This will help build stability without over-relying on braces.
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Modification of Activities: When engaging in activities that may overstrain your knees, use modifications or alternative methods to perform tasks while minimizing knee stress. For instance, consider using ergonomic aids at your workplace or during daily errands to reduce strain.
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Pain Management Techniques: Continue utilizing NSAIDs as needed, but also consider incorporating gentle physical modalities such as heat or cold therapy to manage pain after any re-injury or discomfort.
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Incorporate Supportive Tools: Since you’re hesitant about using braces, consider using compression sleeves or kinesiology tape. These can provide some support and proprioceptive feedback without being as restrictive as traditional braces.
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Dietary Supplements: Talk to your healthcare team about supplements that may support joint health, such as glucosamine and chondroitin, although evidence is mixed. Omega-3 fatty acids, either from diet or supplements, can help reduce inflammation. Always consult your healthcare provider before starting any new supplements to avoid interactions with your current medications.
Questions for Your Healthcare Team
- What specific strengthening exercises can I do at home to support my knees without putting them at risk?
- Are there any additional monitoring strategies to assess my joint stability during physical therapy?
- Can you recommend resources or additional therapies that might be beneficial, such as occupational therapy or a different approach to pain management?
- What lifestyle modifications or supports would you suggest based on my work and daily activities?
Final Note
It’s great that you’re proactive in seeking solutions amid your challenges. Each step you take, even small ones, can provide relief and improve your function. Keep tracking how your body responds to these strategies as you discuss them with your healthcare team. If you have more questions or need support, don’t hesitate to ask.
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