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dayzed

522d

I've been dealing with the idea of being misdiagnosed? When I was a teenager I was told by my primary care doctor (ish) at the time that a lot of my pain could be from hypermobility syndrome but honestly I'm not sure if that's the case. My knees constantly ache, all the time. As long as I can remember and at some point it gets too rough to want to walk. I think at this point I'm still abled body of course, I can walk but that constant unstopping pain paired with my hip giving out if I walk more than like ~30mins consistently-ish give of take, that can actually take me out of commission for days. I'm on disability for my mental health but my body feels as if it's deteriorating and I feel so bad being like this at 21, I say I'm year based young but have the body of an unhealthy elderly person. I also have a slight curvature in my spine from a mild case of scoliosis that makes me literally from top to bottom of me ache. I mostly can get by but it gets hard on my worst days. My family has a history of arthritis and I'm worried it may be that too as my joints in my hands and wrists suffer at time too, but being an artist and a person that plays video games maybe it's just pain from that. I don't know, I just know that I don't personally see a very drastic bend in my joints to think this IS hypermobility syndrome even though it's on my record. Should I try to get another opinion years later? Or just, deal with it? I have very bad anxiety and I'm worried about two main outcomes, either being told the same thing or being told there is nothing wrong they can tell at all and having to deal more with the health care system in my country. Any advice? 🥲

Top reply
    • Elora36

      484d

      I’m 37 and my pain started in just a few joints when I was 21. I was not diagnosed until I was 35. To me it sounds like EDS or hyper mobility. Doctors are very bad at diagnosing it, it could definitely be something else. What you need to do (though it is hard to find) is find a Pysical Therapist who specializes in hyper mobility and or EDS. They will be much more likely to be able to diagnose you and if you have hyper mobility it can be mostly cured with the right kind of slow gentle physical therapy. I’m on my 4th PT and finally starting to get somewhere. Don’t give up! I also have really bad anxiety, I’ve learned it’s a symptom of Hypermobility and it’s all connected to the nervous system. Look into vegus nerve relaxation techniques. It’s been helpful for me to know it’s physical and not in my head and that I don’t have to do years of talk therapy that it’s my nervous system and it can be calmed by physical techniques not mind tricks. And by calming my nervous system I calm my chronic pain. Let me know if you want PT recommendations ❤️

    • Elora36

      484d

      I’m 37 and my pain started in just a few joints when I was 21. I was not diagnosed until I was 35. To me it sounds like EDS or hyper mobility. Doctors are very bad at diagnosing it, it could definitely be something else. What you need to do (though it is hard to find) is find a Pysical Therapist who specializes in hyper mobility and or EDS. They will be much more likely to be able to diagnose you and if you have hyper mobility it can be mostly cured with the right kind of slow gentle physical therapy. I’m on my 4th PT and finally starting to get somewhere. Don’t give up! I also have really bad anxiety, I’ve learned it’s a symptom of Hypermobility and it’s all connected to the nervous system. Look into vegus nerve relaxation techniques. It’s been helpful for me to know it’s physical and not in my head and that I don’t have to do years of talk therapy that it’s my nervous system and it can be calmed by physical techniques not mind tricks. And by calming my nervous system I calm my chronic pain. Let me know if you want PT recommendations ❤️

    • Smoores

      520d

      I have the same thing with my knees and hips. They give out randomly and I have arthritis in my knees so I’m told…I have joint hyper-mobility too and I dislocate my joints easy. I’m scheduled for surgery in august for a shoulder dislocation that caused a tear in my shoulder and constant tendinitis. I’ve literally been told by my doctors that it’s “normal aging stuff” but I’m barely 30 🙄 they say as long as I can just take ibuprofen I should just suck it up and accept it as part of life. It’s been frustrating

    • nerb

      521d

      HSD definitely causes a lot of pain on its own. But have you looked into EDS or arthritis diagnosis’s?

      • dayzed

        518d

        @nerb Not yet, I think it may be good to bring it up with a doctor when I can, thank you for your input! EDS seems like it could be something more there for me

    • not_b00bs

      522d

      how much do you know about ehlers-danlos syndrome?

      • dayzed

        518d

        @not_b00bs Not much at all, I have checked it out and that seems like something worth looking into more.

    • dayzed

      522d

      Sorry for my grammar and spelling errors! I hope it still made a bit of sense. 🥹

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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