Oh my goodness I feel so understood when I listen to and watch you! I am 47 and was just diagnosed with benign hypermobility syndrome in April. I don’t know if this is the same as HSD, but I have most of the symptoms for that and hEDS. I’m angry that I spent so many years being misdiagnosed. Nobody understood or listened! So many years of PT and injections, and being made to feel like I was nuts.
I'm so sorry you have had such a rough time (unfortunately as of right now that seems to be the norm for most patients). Benign Hypermobility Syndrome is technically considered to be outdated language, but it may just be that your medical doctor isn't aware in the recent change in terminology. Please do let me know if you have any questions and I'll try to incorporate them into future episodes
@@hypermobilityhqgood to know! She is a rheumatologist, but I was just grateful she took the time and got all of my history! The last one just kept checking bloodwork for RA because I had some abnormal results here and there. He never asked about anything but my hands! I have a lot of issues with TMJ, headaches, reflux, pelvic organ prolapses (that came back after surgery), IBS/constipation, very hyperextended knees with Chondromalacia and Patellofemoral arthritis, femoroacetabular impingement with arthritis and have had bilat labrum repairs (I’m definitely not an athlete), recurrent wrist tendinitis, atrophic scarring, etc. etc. it’s been a journey. Thank you so much! I will let you know if I have questions that come up.
My body didnt feel safe like o could trust it to catch me or hold me together. Having it with psychosomatic pain doesnt help xd. I get confusted wich one is screaming for my attention I think what anoyed me the most is i had years of fysical therapist etc for different injuries including psychosomatic pain. One did diagnose it in my hands but only about a half a year ago someone was like girl you have that in your whole body. Nobody told me all those injuries that could have been prevented even with my mental health going with it. Its just sad. Like i wonder if i was told this before and had the right help it might have never changed to psycho somatic pain
I'm so sorry for what you've been through, and unfortunately your experience of delayed diagnosis is the norm. Honestly, an earlier diagnosis (or at least identification of hypermobile connective tissue) generally will result in better symptom management because issues can be identified before they progress and injuries can be treated before they worsen. But it's important to note that even though you have a mixture of pain theoretically some of it will still be treatable (or at least manageable)❤🙏
Oh my goodness I feel so understood when I listen to and watch you! I am 47 and was just diagnosed with benign hypermobility syndrome in April. I don’t know if this is the same as HSD, but I have most of the symptoms for that and hEDS. I’m angry that I spent so many years being misdiagnosed. Nobody understood or listened! So many years of PT and injections, and being made to feel like I was nuts.
I'm so sorry you have had such a rough time (unfortunately as of right now that seems to be the norm for most patients). Benign Hypermobility Syndrome is technically considered to be outdated language, but it may just be that your medical doctor isn't aware in the recent change in terminology. Please do let me know if you have any questions and I'll try to incorporate them into future episodes
@@hypermobilityhqgood to know! She is a rheumatologist, but I was just grateful she took the time and got all of my history! The last one just kept checking bloodwork for RA because I had some abnormal results here and there. He never asked about anything but my hands! I have a lot of issues with TMJ, headaches, reflux, pelvic organ prolapses (that came back after surgery), IBS/constipation, very hyperextended knees with Chondromalacia and Patellofemoral arthritis, femoroacetabular impingement with arthritis and have had bilat labrum repairs (I’m definitely not an athlete), recurrent wrist tendinitis, atrophic scarring, etc. etc. it’s been a journey. Thank you so much! I will let you know if I have questions that come up.
My body didnt feel safe like o could trust it to catch me or hold me together. Having it with psychosomatic pain doesnt help xd. I get confusted wich one is screaming for my attention
I think what anoyed me the most is i had years of fysical therapist etc for different injuries including psychosomatic pain. One did diagnose it in my hands but only about a half a year ago someone was like girl you have that in your whole body. Nobody told me all those injuries that could have been prevented even with my mental health going with it. Its just sad. Like i wonder if i was told this before and had the right help it might have never changed to psycho somatic pain
I'm so sorry for what you've been through, and unfortunately your experience of delayed diagnosis is the norm. Honestly, an earlier diagnosis (or at least identification of hypermobile connective tissue) generally will result in better symptom management because issues can be identified before they progress and injuries can be treated before they worsen. But it's important to note that even though you have a mixture of pain theoretically some of it will still be treatable (or at least manageable)❤🙏
@@hypermobilityhq thank you. Your videos are very helpfull