Back & Blood Pressure

This has been a very busy past couple weeks!

My back continues to get worse. It's now constantly bothering me and I haven't really found anything that relieves it. We're backing down a lot in PT to try to allow my back to calm down, but it's hard to back down too much because the rest of my body needs to strengthen to keep up with my recovery. My PT has been doing some manuel work to try to relieve my SI joints (lower back) and re-align things. That seems to be helping a little bit.

Now, for a totally different, non-joint related topic...high blood pressure.

I've discovered that I've been having high blood pressure. Right now I'm keeping a log of my BP, as we try to figure out what's going on. The interesting thing with my having high blood pressure is that EDS patients usually have low blood pressure if anything. The systolic blood pressure (bigger, first number in a BP reading) deals with the elasticity in your vessels. Having EDS, there is thought to be more elasticity than normal, that's the problem with EDS things are too loose. Well, my BP readings don't match that thinking. I'm going to see my family doctor to see if we can figure this out.

Minus the back and BP, I'm feeling really pretty good. My knees and hips are pretty much right on track. The original goal was to stop with PT this summer, so we're hoping I can stay on that track.

May

An update is long overdue.

First of all I've been doing pretty well. Still going to PT twice a week. My quad is improving and I'm finally able to gain some strength. I'm still having significant back discomfort which is limiting me in PT. I'm focusing more on core strength to stabilize and hopefully help calm down my back issues.

It took a spill the other day, falling and landing with almost all of my weight on my knee. The good news is that my knee stayed in place and everything, but I'm having some pain posterior to my knee cap (patella tendon insertion area). I'm surprised with how good I still feel considering the fall.

I'm still trucking along in PT and will continue to do so until I'm able to be more active. My therapist thinks I might be able to be done with PT by this summer, so we'll see.

On an EDS note..
This month is Ehlers-Danlos Syndrome awareness month! I hope everyone reading this blog knows a thing or two about EDS now. But, in case you don't, or just need a reminder; EDS is a rare connective tissue disorder, dealing with a collagen dysfunction. Collagen is in just about everything in your body; bones, ligaments, tendons, blood vessels, organs and skin. EDS causes hypermobile and unstable joints, fragile blood vessels and organs, as well as heart complications. There is no cure for EDS and no specialized treatment. Most doctors don't know about EDS or have never seen a patient with EDS before.

The EDS National Foundation is working on more and more research, especially with the vascular components of EDS. It's interesting to see even in the three years since I've been diagnosed how much more they've learned and how many more research projects are going on today.

My goal as a patient with EDS is just to simply spread the word. If I can teach just one person, or make just one more medical professional aware of EDS that's all that matters. And even more importantly, if I would be to prevent just one patient from going through the long drawn out journey that I had to go through to get diagnosed by simply telling my story, then that's just what I'm going to do.