lindsay.sparkles

I was referred to a geneticist by my GP for the initial diagnosis, then I saw a rheumatologist and a physiotherapy practitioner at the EDS Clinic at Toronto General Hospital. Not on my period (I don't get periods because I have a hormonal IUD).

My original diagnosis was EDS, but I saw a specialized clinic and basically the criteria for hEDS is super specific now (they just changed it) and I fall a bit short. Basically you need 5 of 12 listed signs of a generalized connective tissue disorder. I basically have 3.5 - soft skin, stretch marks, and atrophic scarring - and piezogenic papules on one heel but not the other (you need both for it to officially count). So what I have is VERY close to EDS, even though they're not calling it exactly that.

I have orthostatic intolerance (not quite full-blown POTS but something of that sort) and I'm convinced it's what's making me feel terrible right now, for the last week or so. I'm exhausted, light-headed, occasionally nauseous, little-to-no appetite, occasional headaches...I just have no energy to do things because everything drains me. I work full-time and manage that but just don't feel good. I also have Hypermobility Spectrum Disorder. I'm not depressed at all or anything, I don't think this is psychological. Does anyone have any idea of what's happening? Can you relate? What do you do about it?

Yup, I bruise super easily. From what I've been told it's probably related to my Hypermobility Spectrum Disorder.

Hi everyone, I'm a 25-year-old woman. I have hypermobility syndrome/hypermobility spectrum disorder and was evaluated by an EDS/HSD clinic in my city. I have a lot of issues with lightheadedness and palpitations when standing up and especially if I've been bending down and stand up, or even with mild exercise, such as climbing a few stairs. I've had an echo (normal) and a holter (no arrhythmia). During the appointment at the EDS clinic, they did a "poor man's tilt table test" (got me to lie down and stand up) and said that while I definitely have orthostatic intolerance, and my heart rate goes up, I don't quite have the 30 bpm increase associated with POTS. I don't have orthostatic hypotension either, my blood pressure runs kind of low in general but does not drop significantly when I stand up. My biggest issue is intense tachycardia (sometimes up to 160 BPM) with mild exercise like climbing stairs or walking up a hill. I can't possibly be that out of shape - I walk a ton. Does anyone else have orthostatic intolerance without technically having POTS? Is this another form of dysautonomia?