So, last week I underwent examination by a specialist and along with some genetic testing. It will be a few more weeks before the labs come back, but the doctor was able to confirm that I can add Ehlers-Danlos Hypermobility Syndrome to my list of diagnoses! Yay!!! (Noooo!) Actually, I was expecting this and am excited to have confirmation.
I will be starting physical therapy soon and my diagnosis of EDS will be very helpful to the therapists who tailor a program to my needs.
If my doctor was able to diagnose me upon examination, why do I need blood work? It seems there are six main types of EDS, some of which involve the vascular system. Although my doctor did not think it likely that I have this type of EDS, it is always best to know. If positive, I will need to seek care from a cardiologist.
Some reasons why I suspected I had EDS:
Many times, I have tendon strain, weakness & pain without joint involvement;
Nearly all my fingers bend backward;
I once dislocated my shoulder during an ordinary yoga class;
My TMJs pop rather painfully while I am eating; and
My knees dislocate without any provocation. Popping them back into place requires I stand immediately (PAINFUL) and put all my weight on the one leg. It is not always easy to pop it back into place.
Some information about EDS Hypermobility:
"Joint hypermobility is the dominant clinical manifestation. Generalized joint hypermobility that affects large (elbows, knees) and small (fingers, toes) joints is evident in the Hypermobility Type. Recurring joint subluxations and dislocations are common occurrences. Certain joints, such as the shoulder, patella and temporomandibular joint dislocate frequently. The skin involvement (smooth velvety skin with or without hyperextensibility) as well as bruising tendencies in the Hypermobility Type are present but quite variable in severity.
Chronic pain is a well-established and cardinal manifestation of Hypermobility EDS and it is common for pain to be out of proportion to physical and radiological findings. The origin of the pain is not clearly understood, but some of the likely causes include muscle spasm (tender points are sometimes present) and degenerative arthritis; neuropathic pain is also common.
To date, there is no distinctive biochemical collagen finding identified for the majority of Hypermobility cases. The Hypermobility Type of EDS is inherited in an autosomal dominant manner."