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stxrberrym00n

371d

does anyone know what conditions hEDS can be mistaken for? i have many of the symptoms, but not every single one. i also have a lot of other symptoms that don’t fit hEDS. (i’ve been tested for autoimmune diseases and it’s always negative) my symptoms keep getting worse and it’s debilitating but no one can figure out what’s going on.

Top reply
    • Ash.G

      60d

      I am having similar issues where I am trying to figure out my joint instability and problems with temperature disregulation. I have hypermobility mostly in my knees, ankles and hips. However every joint gets widespread stabbing/shooting pains and I have subluxations at worst, not really full on dislocation. I also get dizzy and have feelings like I am going to faint. However I usually have time to get to a safe spot before it really gets bad. However I definitely don't meet too much of the score thing most people test and although my skin is fragile and slow to heal properly it's not stretchy either.

    • Ash.G

      60d

      I am having similar issues where I am trying to figure out my joint instability and problems with temperature disregulation. I have hypermobility mostly in my knees, ankles and hips. However every joint gets widespread stabbing/shooting pains and I have subluxations at worst, not really full on dislocation. I also get dizzy and have feelings like I am going to faint. However I usually have time to get to a safe spot before it really gets bad. However I definitely don't meet too much of the score thing most people test and although my skin is fragile and slow to heal properly it's not stretchy either.

    • Bambi1993

      356d

      Sadly drs just slap the fibro diagnosis on people they deem too complex or just don't know what's going on with them. Because they simply cba running tests and figuring out what's actually going on. They Pat you on the head, give you a leaflet then throw meds at you and send you on your way. If you need to go to A&E it's pointless they will see fibromyalgia and basically say we can't (actually it's won't) help you because it's a chronic issue no matter how much pain your in, they don't seem to grasp the concept of the pain is unbearable hence I am here again it's a Pat on the head have meds thrown at you then send you on your way. It's nearly impossible to get a second opinion cause again they see fibromyalgia and again they dismiss you and agree with the doctor who diagnosed you. Fibro is misdiagnosed all the time it could be one or more different conditions but again they won't want to admit they were wrong so they don't want to double check. Many people with fibro probably have something completely different. They throw meds at us and then have the nerve to call us drug seekers which is far from the truth 🙄

    • the.misguided.girl

      363d

      I completely get this. I'm sorry I can't fully answer your question, I just wanted you to know, you're not alone.

    • Teeoo

      366d

      I was diagnosed with fibromyalgia but the doctor who diagnosed me didn't even ask me anything or look at my joints except asking if any of my family suffers from anything, his face lit up when I told him my mum had fibromyalgia, I fit heds criteria not fibromyalgia, he couldn't be asked to put in an effort

    • Lilidoodles

      370d

      I was misdiagnosed with Fibromyalgia instead of EDS if that’s what you’re asking lol

    • CriCri

      370d

      Unfortunately genetic testing is not yet available for hEDS as they haven't found the gene responsible for this (although there are some studies going on now), but it is for other forms of EDS. You would need to see a good rheumatologist with experience/specialism in connective tissue disorders. Hypermobility exists on a spectrum which goes from benign hypermobility to hEDS at the opposite end. If you don't fit the criteria for EDS you may well have HSD (hypermobility spectrum disorder). However if you see someone who doesn't have experience with this, they could diagnose you with fibromyalgia and similar things. I don't know where in the world you are but it's worth checking whether there is a National EDS support charity and contact them asking for advice on your location and which professional to see. Hope this helps xx

    • Bijoux_bean22

      370d

      I met someone who had muscular atrophy I think, but was incorrectly dx with EDS first. Not sure if it helps but there are many other types of connective tissue diseases as well. Sending lots of love.

    • Magpie42

      371d

      And yes, getting genetic testing is always a good idea. Meant to add that.

    • Magpie42

      371d

      I've run the gamut of testing with docs. What symptoms are you dealing with?

    • Keikochan

      371d

      I'd suggest genetic testing as well. Could be marfans. What are your symptoms?

      • stxrberrym00n

        371d

        @Keikochan i have lots. tachycardia, low blood pressure, joint laxity, joint pain & stiffness, muscle pain, easy bruising, blue gums & nails, migraines & headaches, constipation, extreme fatigue, lightheadedness, stretch marks, and erythromelalgia. i’m probably forgetting some as well

        • Juno2191

          371d

          @stxrberrym00n you don't need all of the symptoms to be diagnosed with hEDS. I have all of the symptoms you described and have been diagnosed with hEDS, POTS, MCAS, and Lyme. Lyme can mimic POTS as a heads up, but we know I have underlying pots because my symptoms date back to before the suspected tick bite. As for diagnosing, genetic testing is a good way to go, but if you can find a way to a dysautonomia clinic they may be able to help you, especially for tachycardia, fatigue, lightheadedness, and the blue fingernails. It's a longer shot, but it's how I was diagnosed with hEDS.

    • Happyfeet007

      371d

      If you haven’t had genetic testing that could be a helpful step. I have a mutation of FLNA gene that mimics EDS symptoms but also gives other symptoms like migraines, asthma, and heart defects. A geneticist can test a panel of genes that are associated with hyper mobility

      • stxrberrym00n

        371d

        @Happyfeet007 i’ve been denied for genetic testing because they “believe it’s unnecessary for diagnosing hEDS” im so disappointed because i was banking on that testing to help but they wont accept me. i was even referred by numerous doctors and they still denied me

        • Happyfeet007

          358d

          @stxrberrym00n I’m sorry to hear you’re being rejected. There are many genetic conditions that can cause hyper mobility. I wonder if you could get a second opinion?

☝ 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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