But you look so healthy

Posted October 29, 2018

by Sydney H.

My hypermobile EDS (hEDS) journey has been long as I am 73. My primary care physician and pain management provider see me as a poster child for hEDS. I am a retired RN with 30 years on my feet swinging shifts.

My husband is a retired osteopathic physician which is my not-so-secret weapon against this painful and degenerative disease. I receive osteopathic manipulative medicine treatments and cranial manipulation at least once a week. My long, skinny, somewhat unstable neck could use work more often. My comorbidities are moderate to severe osteoarthritis and peripheral neuropathy.

As most zebras will tell you, I have chronic pain and I am allergic to nearly every drug on the planet. I finished my nearly annual PT round with the suggestion that I try to walk every day to maintain my weight and mobility. My husband walks with me because of intermittent balance issues that are central, not vestibular. No falls in two years! Yay!

Any other exercises they and I have tried seem to create injury. I still am feeling a sore tendon in the back of my left leg. I do have a total knee replacement in my right knee from 2015. I have had my second bladder surgery and now have a fantastic InterStim battery on my sacrum that has changed my life of pads to none. So worth the surgery!

Like all zebras, I look younger than my age and hear the usual, “but you look so healthy,” and, “how can you have a disability placard because you can walk without a wheelchair?”

I intend to avoid that as long as I can, too. My walks every day cost me a lot of nerve pain in my feet and fatigue. Exercise has always used up spoons not energized.

I was a dancer until 17, I am a mother of 3 biological sons and one stepson, ages 49 to 54. All are healthy with minor joint pain with running or mountain biking but their daughters are all showing signs and symptoms of hEDS. My granddaughter Kim was actually diagnosed with hEDS before I was about 4 years ago. The other three are not diagnosed as yet but are being treated for their symptoms. We are all 9/9 on the Beighton scale. My hands are too damaged with osteoarthritis to do the tricks anymore but I could most of my life.

I am on a strict self-enforced diet of no dairy, no gluten, no nightshade fruits and vegetables and now no gluten. The only grain I do eat is sorghum that my husband cooks in the steam pressure cooker for us three days ahead and refrigerates. I put blueberries and almond milk on it. I avoid sugar as it definitely causes an increase in joint pain. I try to maintain a good level of health with diet, mild exercise and rest days. Having a routine and calm environment helps with stress. Stress is my number one trigger for major pain flares.

My loving and supportive husband gets credit for my still being as healthy as I am living with hEDS.

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