If I had to list the worst EDS symptoms for Dax it would go:
1. Malaise & Fatigue
2. GI problems and discomfort (I’ll include his throat & mast cell issues here)
3. Sharp musculoskeletal, joint, and bone pains
4. Dysautonomia (dysfunctional autonomic nervous system..anything the body does automatically without thinking)
5. Foot and shin pain
There are MANY other symptoms. You can look at those here. There are too many to list.
But… for the purpose of today and this blog, we are going to talk about the foot pain and piezogenic papules.
Why is foot pain one of the most debilitating symptoms? Because you have to walk on your feet. You can’t just decide to not use that part of the body (like a shoulder or finger). It never heals or goes away…ever.
This is one of the issues that I can heavily relate to, because (as you can see) I too have terrible piezogenic papules. Those suckers HURT. It feels like you’re walking on glass. For some people that have them they do not have pain. For us…we DO! It is difficult to exercise or just perform activities of daily living when the soles of your feet are either on fire or feel like they are covered in glass.
I’m sure part of this is due to the heavy overpronation and pes planus (collapsing arches). That’s why Dax was molded for custom orthotic inserts today (which insurance will not cover. 😡 grrrrrr). These will run me over $100 a pop, but are crucial to try to prevent surgery that he probably wouldn’t heal well/properly from (based on past surgical experiences and the fact that EDSrs just don’t do well in that department).
Those 5 symptoms up-top are Daxman’s most terrible and chronically persistent (although there are many others). It’s every day. Today it was all 5, including really awful issues withholding temperature/circulation.
His little finger tips were reddish blue and he said his left thumb kept going numb (Raynaud’s). It was 74-5 degrees in our house, he had clothes on, and his hands were like ice. This is a part of the whole dysautonomia problem. He sleeps with a heated throw, a down comforter, and 4 or 5 fleece blankets (even in Summer).
It’s such a shame for an 8yr old boy to have to deal with this mess, but he sure does handle it well.
You can’t make this craziness up.