I am 25 years old and have over 35 chronic pain conditions. I was born with cerebral palsy, but wasn’t diagnosed until the age of one — when I didn’t hit the typical milestones of sitting up or taking my first steps. I used a walker up until the age of 7 and have since used a wheelchair.
Around age 7 I had joint hypermobility and chronic dislocations. The doctors thought it would be best for me to work on more physical therapy and save my energy by using the wheelchair. That helped for a while, but by the time I was 10 the pain was so bad that the doctors could not figure out what was wrong.
I had 7 more surgeries to try to stop the dislocations. They did not work, so it was back to drawing board. We did chiropractic and other alternative treatments, which only provided temporary relief.
I graduated college at 20 and decided to go back to a new family doctor because the pain was so bad that I could barely function. He ordered a CT scan and found out that I had osteoarthritis throughout 90% of my body, scoliosis, degenerative disk and spine disease.
I was ordered to do more physical therapy and go on anti- inflammatory meds and creams. This help moderately, but I still had extreme pain in my stomach, joints and head.
They finally did a CT of my head and that came back clear so my osteopathic doctor decided to get me allergy tested. I turned out to be allergic to life — with over 150 food and environmental allergies. Upon working with my allergist she told me that I needed to have a Skype call which her colleague who was a geneticist. I was diagnosed with Ehlers-Danlos syndrome (EDS) Type 3 — which encompassed all of my chronic pain issues plus many more.
Those symptoms are:
Overly flexible joints: Because the connective tissue that holds the joints together is looser, your joints can move far past the normal range of motion. Small joints are affected more than large joints. You might also be able to touch the tip of your nose with your tongue.
Stretchy skin: Weakened connective tissue allows your skin to stretch much more than usual. You may be able to pull a pinch of skin up away from your flesh, but it will snap right back into place when you let go. Your skin might also feel exceptionally soft and velvety.
Fragile skin: Damaged skin often doesn’t heal well. For example, the stitches used to close a wound often will tear out and leave a gaping scar. These scars may look thin and crinkly.
Fatty lumps at pressure points: These small, harmless growths can occur around the knees or elbows and may show up on X-rays.
In addition, I have polycystic ovarian disorder, adrenal fatigue, abnormal hormone levels and gastro paresis, which is stomach motility disorder.
My treatment now is just symptom management since nothing I have is curable. I work from home because my pain and allergies are so severe.
Rebecca Fortelka lives in northern California, where she is a freelance writer and web designer.
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The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.