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Avatar universal

I think I might have EDS.. Here's why. Please help..

Hi, I am a 22 year old female. I have been having chronic pain since the age of 15 and I have been diagnosed with Fibromyalgia because there has been nothing found that is explainable for the pain. I also have a heart condition that is currently diagnosed as inappropriate sinus tachycardia but is now getting looked into as POTS. I have bruised very easily and extensively ever since i was a child. I can be poked and get a bruise. Also i wake up with unexplainable bruising in various places on my body, legs, arms, etc. I have had thinning hair for as long as i can remember, but my hairdresser noticed about 3 months ago that my hair is gaining elasticisty and is now breaking off in chunks in the back of my scalp. I have to be very careful when i brush it so I do not pull too much hair out. Hair falling out has never been a problem for me, and neither has elasticity of my hair. I commonly find myself fatigued after doing little to nothing. I've always equated that to depression, but now i am not so sure. I have had varicose veins in my legs since i was about 14 years of age. I am so embarassed of my legs that i rarely wear shorts. I had never thought much of my varicose veins because my mom has them too. I get frequent phantom migraines that are unexplainable by my doctors. I think the worst part is the pain that i feel. I often wake up with joint pain that lasts all day--although i have never dislocated a joint that. The only thing that has worked well for my pain is Laser Pain Therapy. I was on Vicodin 10s and that didnt even touch my pain but the laser pain therapy worked well for me and stopped the pain for a while but now its back and worse than ever. I have had multiple ekgs done and they all come up inconclusive or "perfect" as the doctors say. I go to the ER frequently for chest pain in fear i am having a heart attack because my pulse gets up to the 170+ range and they do the ekg and say i have no reason to be in physical pain. I am just seeking answers. Or help to find answers. If you know of anything this sounds like please feel free to share your thoughts and opinions. I go to the doctor in 3 weeks to get tested for POTS and on May 4th I go to the geneticist for a screening to try and figure out if i do indeed have EDS or not. Thank you for your comments and help. Positive vibes.
3 Responses
Avatar universal
Hi there! I know its terrible not having answers :(. I have eds classical with vascular overlap, its been a looong road.   You didnt mention if your joints were hypermobile, or if you have stretchy thin skin that splits open easy.
Have you had a full rheumatology work up to rule out anything inflamatory such as rheumatoid arthritis?
Avatar universal
Hi, I'm wondering if anyone has used HGH as a treatment and if it has helped. Also has anyone had full blood tests including free testosterone and an MRI looking at the pituitary glad to see if it looks normal?
I'm just trying to think outside the box here.
Thanks :-)
Avatar universal
Hi, I'm wondering if anyone has used HGH as a treatment and if it has helped. Also has anyone had full blood tests including free testosterone and an MRI looking at the pituitary glad to see if it looks normal?
I'm just trying to think outside the box here.
Thanks :-)
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