EDS Awareness Day 15

Day 15 – Childhood & Teenage Years

My childhood and teenage years were a struggle. I have heard from many other Zebras that their experience was similar. I had lots of body pain, Stomach issues, headaches, and injuries.

Doctors kept saying it was not possible that I had body aches and pains at my age. So they said I had growing pains or that I was seeking attention. They tried to convince me that it was totally normal. Something all kids went through. As the years went on and my story stayed the same I was sent to counselors to try to get to the root of my mental anguish to try to help with my “perceived” pain. I was told for many years my pain was “not real” and I “needed to forget about it.”

The Neurologist said “Kids don't get migraines” so they called it a seizure disorder even though I never had a seizure. I found out many years later that I suffer from migraines and cluster headaches, No seizure disorder here. I would get migraines several times a week before treatment. I had one that lasted nearly 2 months with very little relief. That is when I was finally able to get the cluster headaches diagnosed. The migraines were setting off cluster headaches which triggered another migraine and it was just going back and forth between migraine and cluster headache. I was miserable! I was 30 years old and the mom of 7.  It was one of the toughest times I can remember. 

Eating was also a struggle. I threw up and had stomach pain often. It got so bad a social worker convinced me I had an eating disorder and made me go to an inpatient recovery program. I was unable to discover the cause of my eating disorder while I was there which was the biggest step we were expected to accomplish to successfully complete the program. Needless to say, I failed. Again many years later they discovered there was very little to no motility in my stomach so the food just sits there until it rots and then I throw it up. I was getting the nutrition from the food that I needed my body just chose not to get rid of the rest. 

I was ok at sports but I often hurt myself pulling muscles, tearing ligaments, or just being completely wiped out after playing. I would often need to sleep for hours to recover. I would also have to protect myself from the sun because I would get horrible rashes from only a short time outside. I had trouble keeping up with the running and endurance sports in gym class. My heart would feel like it was going to beat right out of my chest and I could hardly breathe. However, there was one sport that I excelled at like most of us Zebras do. Gymnastics, now that was something I was very good at. I could bend and do things that just amazed and impressed the instructor. I loved being good at something so I would stretch as far as I could for everything we did to get the oohs and aahs. Little did I know I was causing significant irreversible damage. I  dealt with many injuries like Rolling ankles, plantar fasciitis, and tendonitis. I was often covered in bruises and had many sprains, strains, and broken bones. I was in the ER so much the doctors and nurses knew me by name when I would come in. They always said I was their favorite patient cause I kept them on their toes.

I was given many different diagnoses over the years. Lupus (ruled out a couple of years later,) psoriasis, arthritis, Fibromyalgia….

Then getting a diagnosis for me was life-changing. I was 38 when I got diagnosed with hEDS. I do still have arthritis, fibromyalgia, and psoriasis but everything finally started to make sense. But not everything fit so we kept looking. That's when they realized my muscles were affected more than they should be. The genetic screenings came back showing muscular dystrophy. Unfortunately, they have only been able to narrow it down to a form of limb-girdle muscular dystrophy but we do not yet know the subtype.

I finally had the answers I was looking for. Now I'm on the journey of living my best life taking every day one day at a time. 

Does any of this ring a bell for you? Join us on our Facebook group and tell us about your childhood and teenage years. What did you have to go through?

I see you... 

I hear you...

 and I am so glad you are here ❤️

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