Hi I once asked my doctor about Elhers Danlos Syndrome because the plain hypermobility diagnosis doesn't explain everything. He said that the rheumatologist I saw when I was 15 (I'm 21 now and was 20 at this particular appointment) would have diagnosed me then, when my only problem was back pain! A lot has changed in 6 years!
I had some blood tests for something unrelated (maybe) and there were some discrepancies with my inflammatory markers. They repeated the blood tests months later and they're even more out of range so I've been referred to a musculoskeletal specialist and I hope I'm brave enough to ask about EDS. It just makes sense! And to be honest, people might treat me better and understand that I am in real and constant pain because the looks I get when I explain that I'm "double jointed" are crushing. No I'm not a gymnast, I can't pop my joints out and I'm not super bendy. I am in constant pain, I've been on painkillers since I was 12, I had to be excused from PE a lot which caused the teachers to treat me like crap and mock me because there was "always a problem". Yeah there is. ALL of my joints hurt, some more constant than others, sometimes the pain needs "triggering" like dancing or walking for too long or carrying heavy bags or lying down too long because something hurts but I am always in pain. Somehow. And it kills me seeing normal, happy go lucky 20 somethings who probably only pop pills for a hangover. I am covered in stretch marks! My whole belly area is full of old, new and really recent ones, my arms, my inner thighs and the tops of my legs, my knee even has some! I have moderate IBS which isn't officially diagnosed because I'm too embarrassed and Bucopan helps but I've had people tell me that the food I've just eaten can't be the cause of my running to the bathroom in pain because "it hasn't even been digested yet" so I google-oogled and apparently my stomach is so sensitive that anything "bad" hitting it causes the whole digestive system to "malfunction" and expel whatever's already in there, whether it's ready to come out or not. This can be caused by fizzy drinks, even tiny portions of alcohol, greasy food, takeaway food and more. I've had to run to the bathroom in restaurants and at work and spend like 20 minutes in there being super embarrassed! I get headaches a lot, I can't wear my hair up too long, concentrate too long, wear headbands at all, go out in the sun with or without sunglasses. I get really bad chest pains sometimes. My heart skips beats or races a lot. I got diagnosed with a severe vitamin D deficiency which can cause fatigue and mental fog so I put it down to that but I've been on supplements for months now and I'm not feeling any better. I am tired all the time, I can sleep all day and all night! I finally got to live my dream and go to Disneyland Paris on my 21st birthday which was also the day they started the new parade at night and I missed it because I was too tired and "disinterested" at the time. This happens a lot, i make decisions based on how I'm feeling and then kick myself for them right after. My body feels like cement blocks sometimes and I feel so uneasy and wobbly. My knees and ankles sometimes randomly give and I stumble. Every time I say something it's always "you need to exercise more" "wait til you get to my age" "you should try having arthritis" "you should try having ankylosing" and my favourite which is said by my mother at least once a week "I am A LOT older than you".
I know it's horrible to have EDS and even though I'm not diagnosed I do sympathise with all of you, but I'm actually praying they diagnose me with it so I have an answer and an explanation. For me and all of those people that always treat me like I don't deserve to complain or that I'm too young for anything "real".
So based on what I've just said, do you guys think I have it? Thanks in advance xx