Hello, my name is Melissa. I was recently diagnosed with EDS type 3 in May of 2016. Although I have been in some state of chronic pain since I was 15, only recently had the pain become so unbearable that I decided to seek answers. I have a hip that has subluxed with varying degrees of immobility and excruciating pain for 19 years. When I was 15 I made my own doctor appointment and expressed my concern over my hip pain. My PCP said I "probably had the beginning stages of rheumatoid arthritis," prescribed me ibuprofen 800 and sent me on my way. While I new that was completely inaccurate, I learned to suppress my pain, and began to normalize it not realizing the damage I was doing to my body. I also suffer from searing pain and throbbing in my thumbs due to the deterioration of cartilage in the base joints which have led to bone spurs and extreme sensitivity. I was told there is nothing other than cortisone injections that can be done to ameliorate the pain because there are currently no surgical methods to correct my "issue." In addition I may have cervical compression in my neck and lower back leading to extreme neck pain and non responsive hamstrings, in addition to Fibromyalgia and chronic migraines, orthostatic hypotesion, constant hip subluxations. I also been told I have "signs" of POTS, thought I may have Chiari Malformation, but my MRI's have all come back "normal," and am currently waiting for additional appointments to review possibilities and treatment options.
The lack of knowledge in the available medical community, or rather the community of doctors that are available to the general public, is deafening to someone who is afflicted with a non-curable diagnosis such as EDS. I had to ask to be diagnosed with EDS and my PCP was for the most part unaware, and unfamiliar with it. I am the first person that their office had ever referred to the newly established geneticist who was not interested in performing a blood panel to rule out the more severe forms of EDS. For someone who lives with EDS, knowing that it effects every part of your body, it is so disheartening to have someone dismiss your urge for answers and clarity. That being said, I also find a real lack of available information and research available that defines our situation and needs. I have created this page to help those of us who seek answers. While I may not be able to answer all of them, I do fully intend to devote myself to looking, and sharing everything I come across in the hopes that it can help one of you out there suffering in silence.
I realize that my situation pales n comparison to many who have more severe forms of EDS, but my intention is to help people with ALL forms of EDS. Chronic pain is real, it is mentally and physically draining and we shouldn't be dismissed for any reason. I just want everyone to realize that you are not alone.
Please contact me with any questions, needs and categories you wish to see highlighted here for you. I want to create a site that is genuinely helpful and I am welcome to any suggestions.