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SunshineMortician

779d

I have been suffering from symptoms of POTS, all over joint pain, loss of mobility in my leg (I use a cane now, I can’t move my left leg without excruciating pain), hypermobility joint issues, scoliosis & sciatic nerve pain. I also have PTSD & digestive issues, and am allergic to almost anything you can think of. I have several skin allergies and issues, very low blood pressure that only gets better by consuming too much salt that my body can’t handle (which isn’t helping my problem), and altogether I feel at my wits end. Is there a more all-together diagnosis for these issues? I know I’ve been suspecting fibromyalgia for a while now and my partner thinks I may have ehlers danos syndrome, and my doctor thinks I could have Mast Cell Activation Syndrome. I feel like I’m getting diagnosed with so many new horrible things so fast, including the fact I now have to get an ultrasound on my left thigh to figure out what this giant soft lump in my leg is, since they’ve ruled out lipedema, lipoma, and cancer for it so far. If there’s anyone who has heard of these disorder’s symptoms together or heard something similar to my story before, did they ever find out what was really wrong with you, or did they keep just piling on more diagnoses and throwing treatments at you that you couldn’t afford that didn’t really work? Any kind of feedback is respected and appreciated, even if you don’t have any answers or advice for me. Thank you for reading. 💖

Top reply
    • Delirium

      764d

      Totally sounds like ehlers danlos, you're not alone!

    • Delirium

      764d

      Totally sounds like ehlers danlos, you're not alone!

    • goblin49

      778d

      I agree, sounds a lot like EDS. Often pots, GI issues, and mast cell are comorbidities, so it's possible you could have all four or something similar. I know from experience it is really hard to get into a geneticist, but in the mean time, the Ehlers Danlos Society website has a lot of good info on all of these issues and lists of criteria for various hypermobility disorders.

      • SunshineMortician

        778d

        @goblin49 That’s incredibly helpful and to know they have a comorbidity rate / possibility also reassures me I’m not just getting diagnoses that all feel disconnected or stand alone and that I might be on the right track to getting the diagnoses I need to get better. I’ll definitely check out that website, thank you!’

    • Zel7

      779d

      A handful of those symptoms could definitely add up to EDS. With all the different subtypes, I couldn't say which one. The POTS, joint pain and hypermobility, digestive issues, and possibly more could be from EDS. I suggest seeing a geneticist. There's typically a long wait, at least near where I am, but it's worth it. Unfortunately there's no magic cure or treatment, so if you're treating the symptoms as they arise, that's great. Headaches, heartburn, complete or partial joint dislocations, anxiety, and depression are among a few more symptoms. Best of luck with everything! I hope they have some answers for you soon!

      • SunshineMortician

        779d

        @Zel7 Thank you!! I’ll definitely bring this up with my primary care doctor and see if she can help me expedite the process of getting the proper diagnosis right for me. Thankfully I’m seeing her on the 19th, since I’m planning on asking her to help me apply for disability & get a medical transfer in my apartment complex to a 1st floor apartment without having to pay the $750 switching before lease date fee. So I’ll bring this up with her while I’m there and also ask her if she thinks I should go see an orthopedist, too, or if I should wait for my results on my leg lump to come back. I’m generally hopeful of things turning out alright, but I still have moments of feeling like the train of problems never ends lmao. Especially when I’m always in pain, it makes it hard to keep morale boosted. Thank you so much again for your response, well wishes & take care!!

☝ 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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