- CASE FILE
Ehlers Danilos Syndrome and a world that’s fallen apart. I’m struggling just to participate in life.
ABOUT THIS CASE FILE
As a child I was always very accident prone, constantly hurting or spraining something. I would go to school and immediately go to the school nurse because my stomach hurt. A matter of fact my stomach would hurt after I ate, anything. But this was chalked up to anxiety and I was sent to the school counselor. I had excruciating problems with my knees as a kid, the doctor claimed that I had “soft cartilage” and it would stick to the knee cap as I was walking, the pain was so intense I would just drop to the floor screaming. In high school I dislocated my shoulder while playing around with the family cat, I also broke my right ankle in two places and spent most of my high school career in casts and crutches but then ultimately had to have 2 surgeries to fix the problem. I was always very flexible and in gymnastics from about age8-12. However it never dawned on me that being untrained in the sport since I was 12, that still being able to do the splits at age 35 was an abnormal occurrence. Now fast forward to my adulthood I took a nasty fall while moping the floor barefoot and being 36weeks pregnant (about 8yrs ago). I broke my radial head in my right arm and no one ever did X-rays due to the pregnancy but I still have issues with my tailbone. After that fall, I have never been the same. I started noticing that I was hurting everywhere. My fingers hurt, my wrists and elbows started aching in the months after I had my son. I had clavicle pain like no other, which I ended up having a Mumford procedure on to clean up the arthritic joints. However Over time my neck really became a problem, my traps were spasmed up so hard on the left side that it actually would dislocate my first rib which resulted in thoracic outlet syndrome. I went to physical therapy and he would set my rib only for it to dislocate again before I even left the office. After doing months of therapy to no avail I had a first rib resection and scalenectomy, the TOS was actually cutting off the blood supply to my left arm. After all of this I still found myself in a tremendous amount of pain, my vascular surgeon wanted me to see a rheumatologist. Once I had my apt with the rheumatologist she diagnosed me with Ehlers Danilo’s syndrome type 3, sjogrens syndrome, and fibromyalgia. My neck and back continued to be a major source of my pain. MRI’s revealed that I have 4 bulging discs in my cervical spine, and a disc bulge in the thoracic region as well. Days go by at work (I’m a surgical tech and stand all day long) and some days I feel like I can barely stand upright for the entirety of my shift and if I do make it through the shift I’m left crying as I’m walking to the car cause of the amount of pain that I have to deal with. I must add that I have a lot of pain in my hips as well, recently I have discovered that I cannot exercise at all without having tremendous trouble walking afterwards due to the pain in my hips. I have a lot of fatigue which results in me oversleeping for work and having trouble keeping up with my busy life as a mother, I’ve been having migraines where the pain is pinpointed to my right eye with such intensity it makes my stomach turn, I have recently had a ton of dental issues due to dry mouth I had to have 3 crowns and a redo filling within a years time. My most recent symptoms and most bothersome is now my legs are tingling almost constantly from the knee down. If ever someone could help me figure out the chapters of this book and get them in the right order I feel it would be you guys.