I have had random back and neck pain since I was a young teen.

After more then a decade of hearing “you’re too young for back pain,” “it’s all in your head,”  I developed a real fear about what doctors would think of me.

I finally decided that enough was enough and opened up to my family doctor. We started with physio and it helped some, my physio finally told me to demand an MRI to try to see if something else was wrong. After the MRI I had 3 diagnoses, degenerative disc disease, spinal arthritis, and facet joint nerve pain.

A few months later I realized that my hips and knees were hurting constantly and my doctor then sent me to a rheumatologist. I left with 4 more syndromes one of which explained all the rest. Ehlers-Danlos Syndrome. It has explained why I have always been so flexible and why we could never find the source of my pain. It also explains why even with therapy and medication it isn’t getting better. I have accepted that I will never be perfectly “better” but that will not stop me from being an active and hands-on mom to my three kids. My oldest is high functioning special needs and is seeing a rheumatologist at the Children’s Hospital to find out if he has any signs of EDS. We’re also looking to find out if he can do tumbling and gymnastics, like he wants to. Hopefully my younger two will be cleared of any risk, as will my oldest.

It is a huge relief to have a name to what is plaguing me, to know it isn’t just in my head. It is opening doors for other therapies and types of excersize I can do to try to maintain a healthy lifestyle. I plan to be here for my kids and all their important events in life. I may be rare, but I am still me and more importantly I am still a great mom even though some days I am more immobile than others. I have EDS, but EDS does not have me.

Don’t be afraid to seek help, to talk to your doctors. If you are, or if they intimidate you, find a new one. There is no reason to live in pain or in fear of what people will say or think. Take care of you because you are worth it.

2 thoughts on ““I May Be Rare, But I Am Still Me” Mom with EDS Demands Diagnosis”

  1. Laura Tucker says:

    Can I ask if you have had genetic testing done? I researched EDS and saw that it usually affects Collagen types 3 and 5. My son and I have a deletion that affects type 24. There isn’t much known about this particular collagen gene but after reading your story and looking at symptoms I feel that even if I don’t have EDS it would explain why I have unexplained pains and musculoskelatal inflamation because of our collagen deficiency.

  2. Maria says:

    I have not yet seen the geneticist. I am waiting forth at referral to be put through.

Comments are closed.