Michaela was a normal 15 year old. She had had the regular childhood illnesses, colds, strep etc., her biggest issue was that she kept spraining her ankles. She had sprained both of her ankles at this point by at least 20 times each. We had asked various doctors why she continued to sprain them and how to prevent the sprains. They said that her ligaments were stretched and there wasn't anything to prevent it. No one thought or suggested Ehler-Danlos Syndrome. She had a bad case of mono with strep that fall then as she was getting over that, as she walked to her piano lesson, she jumped because a snake scared her and sprained her ankle again. As the pain continued longer than normal, we took her to the doctor, who sent her to physical therapy. We were very lucky and the therapist knew what RSD/CRPS was and how to treat it. He sent this information to her doctor who confirmed the diagnosis. At first, we were all excited to have an answer as to why she was still hurting even though she was healed. Then we researched and began to understand what this meant.
Michaela and our family have been dealing with RSD/CRPS for 2 years, then last year we were finally told about Ehler-Danlos syndrome (EDS) and she was diagnosed with POTS (postural orthostatic tachychardial syndrome). The pain for Michaela started in her right foot and 1 year later spread to her left foot mirroring the right. The changes in our family have been great. Her little sister now asks how Fred and George (she named her feet) are behaving today. We have to watch the amount of noise and confusion in the house because Michaela can only tolerate so much disturbance. With the use of lidocaine patches she is able to wear shoes and walk but she has to be careful and limit her activity on any given day. Weekends are for sleep and recovery. We have a large, close family and want to do things and be active together, now we have to make choices about whether or not Michaela can come with us or not. I was recently going through pictures and there are a number of day trips that she could not go with us because of pain or other new issues. The RSD/CRPS pain and POTS issues have taken her away from her family, cost her friends and make so much of life hard to smile through, though she can. She is a fighter with great spirit.
Posted on Wed, March 6, 2013
by David Garrison