It's just growing pains

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These are the words I heard over and over again growing up. The first time I realized that my joints were hypermobility was around 6th grade. I discovered then that I could bend my fingers and touch my thumb to my wrist. As a youngster, I used to walk on the tips of my toes and bend my wrist forward..these were confortable. Also, I didn't heal "right", a minor scrape or cut seemed to take forever to heal and when it finally did, the result was often a scar.

I really was pretty fortunate through high school and college. I saw that my knees bent all the way back. I had periodic pain, but the pain  and joint issues didn't begin until my 20's

I started to get horrible headaches and the cause..my neck. I had advanced arthritis in my neck and bulging disks by the time I was 25. I also had severe pain in my lumbar region. I tried to remain active and work through the pain.

Through the years the headaches continued and I had to modify activities because of my back. I also started to get severe pain in my shoulders and knees.

In my late 20's my shoulder was throbbing and it hurt to use. I went through PT and it didn't improve much. I had 3 surgeries on my left shoulder..the tendons had all detached and the joint was filled with fragments. As of today..I can't use my left shoulder...it's bone on bone...Repeat surgeries for the same thing on my right shoulder.

I seemed to injure areas severely so much easier than my friends...I had a fall that herniated 4 discs in my thoracic area.

In 2002, I had a trigger finger. My finger was stuck in one position..straight out and it was hard to do most things. I had a repair..as always I healed horribly..and had to have it repeated.

After the surgery my entire hand blue up and turned purple. It was then that I had the first glimpse it could be a collagen disorder. The doc said "That's nothing I did, I beleive you have a collagen disorder, you need to see a Rheumatologist." I saw a Rheumatologist and he said "You might have Ehlers Danlos"..

Meanwhile my twin brother had just had yet another surgery for aortic problems. He also had dislocations and hernias.

I was advised by all my doctors NOT to have children. Some doctors were not sure what was going on, but knew my back could never tolerate carrying the weight.

My brother had 2 kids and I wanted to find out if I did indeed have EDS for his kids sake.

I waited months to be seen by a Genetic team at University of Pennsylvania. They determined since I didn't have blue sclera or velvety skin,  they could not give me an EDS diagnosis. They thought I did have a genetic disorder, but could not diagnose  it.

Found yet another Rheumatologist..She tested my flexibility and said.."You have the hypermobility type of EDS" Apparently there are all sorts of variations of EVEN type 3.

I've run the whole field of MRIs, Cats..Pt, Chiropractic, Accupuncture, Pain Management.

I'm never NOT in pain.

In 2012 I had emergency surgery for cauda  equine of my lumar..laminectomy and 3 level fusion..2013..tore the ACL and meniscus in my knee and doc talked me into surgery..That surgery left me with a bone on bone knee.

 

At present I need a shoulder and knee replacement. I now have break down in the areas above and below my fusion. I don't take pain meds everyday. I have developed a high pain tolerance. But, my knee hurts with every step and will have a replacement soon.

I still go for PT. Use heat..ice. get nearly daily headaches. I work fulltime, but it is rough. I envy people who can walk without agony.

As many EDSers I also have way more diseases than most people...Hypothyroidism, Type 2 Diabetes, High BP, MVP, and Anxiety and Depression that come and go.

I don't have friend or family support so I get it online. My dad called me a hypochondriatic..so I just stopped telling my folks about my conditions. It's awful to suffer in silence.

Through Facebook Support groups I can finally reach out to others. I can't urge people to protect their joints when they are young. I've only dislocated my shoulder and knees.

I can only say, Unfortunately it gets worse. My doc said I should be in a wheelchair now..but I am just too stubborn.