lindsay.sparkles Posted November 7, 2017 Report Share Posted November 7, 2017 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? Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted November 7, 2017 Report Share Posted November 7, 2017 Hypermobility.... headaches, fatigue, Gastric issues, dizzy and dysautonomia..... How did they come up with hypermobility spectrum disorder and rule out Ehlers Danlos? I don't know the difference, but it sounds like maybe they are labeling symptoms and not making a complete diagnosis. I'm no doctor, so don't trust my suspicions, but it might be a good question to ask a knowledgeable doctor. How do you tell the difference between hypermobility spectrum disorder and Ehler's Danlos type 3? Wish I had an answer for you. Any other thoughts? Kim Quote Link to comment Share on other sites More sharing options...
lindsay.sparkles Posted November 7, 2017 Author Report Share Posted November 7, 2017 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. Quote Link to comment Share on other sites More sharing options...
27 Elephants Posted November 7, 2017 Report Share Posted November 7, 2017 Can I ask who (or what type of doctor) evaluated your hypermobility. What specialized clinic did you go to? I have POTS and suspect EDS as well, but am not sure who can evaluate it. Quote Link to comment Share on other sites More sharing options...
MamaTrain Posted November 8, 2017 Report Share Posted November 8, 2017 Are you in or right before your cycle? That makes a huge difference in a lot of people’s symptoms or the intensity of those symptoms! Hope you feel better! Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted November 8, 2017 Report Share Posted November 8, 2017 I hate to say it, but it may just be the disease. It wears you down. I eventually had to quit working because I couldn't bounce back quick enough during my off time. Now that I have no real schedule, rest plays tricks on me. I get it in my mind I can do 'normal' stuff. Then I try and am quickly reminded by my body that I'm still not normal and it is past my nap time. That is interesting about hEDS and hypermobility spectrum disorder. Quote Link to comment Share on other sites More sharing options...
TCP Posted November 8, 2017 Report Share Posted November 8, 2017 I have EDS, POTS and Mast Cell Activation. All of the above symptoms and more. Hypermobility is EDS. I scored 7/9 on the Beighton Scale and I'm 57 now. Late diagnosis by the rheumatologist. Quote Link to comment Share on other sites More sharing options...
lindsay.sparkles Posted November 9, 2017 Author Report Share Posted November 9, 2017 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). Quote Link to comment Share on other sites More sharing options...
dizzyape Posted November 10, 2017 Report Share Posted November 10, 2017 I also have orthostatic intolerance as well as Ehlers danlos 3. My top symptoms are tachycardia, dizziness, vertigo, gastroparesis, and fatigue but of course there are a host of other symptoms as well. Lately I've been getting these weird feelings of what I call a "rush" I feel lightheaded and just weird. I immediately check my hr and bp and both are normal. Not sure whats going on there. Hoping an MRI in the next few weeks will give me more answers. It's so hard dealing with so many symptoms. I hate not knowing how I am going to feel hour by hour. Quote Link to comment Share on other sites More sharing options...
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