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Chroniclyme

747d

Hey. My name is Amanda, and I am a 24 year old Female. I joined this app to bond with my fellow spoonies. I have had chronic pain my whole life but was not diagnosed with many of my conditions till I was 15/16 years old. I now am fighting to get a diagnosis of EDS as I match 90% of the symptoms of minimally hEDS. It has definitely been a struggle. But my pain is so high that it is difficult to sit up for long periods of time and often suffer from subluxations. I have also had 2 major back surgeries for Scheurmanns Kyphosis - 26 screws and 2 rods and then all of that taken out about a year and a half ago. I am also recovered 5 years from Anorexia Nervosa and am about to graduate from a masters program to be a therapist! I am excited to meet, help, and commiserate with you all!

Top reply
    • Chroniclyme

      747d

      @loveshespoke unfortunately I haven’t gotten it yet :/ still fighting for it. I see a rheumatologist in May and a geneticist in June so hopefully between the two I will. I have just done a lot of research and match much of it

    • loveshespoke

      747d

      How did you get your diagnosis?

      • Chroniclyme

        747d

        @loveshespoke unfortunately I haven’t gotten it yet :/ still fighting for it. I see a rheumatologist in May and a geneticist in June so hopefully between the two I will. I have just done a lot of research and match much of it

    • loveshespoke

      747d

      Aah! I'm with you. I'm currently being checked out for connective tissue disorders.

    • Chroniclyme

      747d

      EDS is Ehlers Danlos Syndrome. It is a connective tissue disorder haha. I am assuming that is what you referred to. I appreciate this, and I would love to chat 😊

    • loveshespoke

      747d

      Hi, Amanda. Wow, you've really been going through it (Still are, I know). I'm not familiar with all the acronyms/terms you're using here, but I'm saying hey, and we have some details in common: young woman (28) in ED recovery living with vast chronic pain that has been hard to diagnose. A lot is still up in the air for me. Here if you want to chat or need support. I'm new too.

☝ 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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