Managing EDS

by | Dec 26, 2022 | Ehlers Danlos Syndrome | 0 comments

What comes next with EDS?

Ehlers Danlos syndrome or EDS is systemic since it affects all connective tissue throughout our body. Unfortunately, many physicians still believe it only affects our joints and those ligaments surrounding the joints. Prior to my diagnosis when I was 32, I had significant foot pain. I was physically fit, ran about 6 miles a day and had always been athletically inclined. As a young girl, I was quite a tomboy, climbing trees, riding my bike everywhere, and generally being very physically active. But, even as a child, I always hurt. I cried at night because my legs hurt, and I could not sleep.

By the time I was 19, I started having my first of many foot surgeries. Tarsal tunnel syndrome, the orthopedic surgeon said. I wonder now, as an RN, why did this surgeon not consider why a 19-year-old would develop a collapsed tarsal tunnel?

Over the next several years, I had surgery after surgery on my feet. The photo is one of my most painful surgeries when my daughter, Carrie was only 1-year-old. You can see in the very old photo, that my foot has a big, bulky dressing with a bar across my toes for protection. Even after 19 surgeries, my feet always hurt. Each time, I was advised that this one would fix the problem. Ironically, I became an orthopedic RN. Some of these surgeries were done by surgeons who I worked with and completely trusted. Now I understand that orthopedic surgeries are should be the last resort in EDS patients.

While collaborating with The Ehlers Danlos Society, I learned that a good physical therapist who understands EDS is very important. The correct type of exercise is also critical, to keep our muscles from being overworked and strained. This book was recommended to me:

The Ehlers Danlos Society offers many educational opportunities. I no longer collaborate with them since I retired last December but I know that education and patient advocacy is so important for us until the medical professionals catch up.

 About Author Jan Hempstead

My name is Jan Hempstead and I’m an RN, although I medically retired sooner than I would have liked because of my multiple diagnoses. I’m also a mom, wife, sister and friend.

This blog is my story about living well with Ehlers Danlos syndrome (EDS), rheumatoid arthritis (RA), mast cell activation syndrome (MCAS), chronic kidney disease (CKD), hereditary alpha tryptasemia (HaT), dysautonomia and Sjogren’s Syndrome (SS).

I started out with EDS and one by one, another diagnosis kept getting added on. Come follow me as I share my journey with multiple specialists, what has worked and has not, and where I’m going next.

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