Monday, July 23, 2012

Love Hurts...

I had sex on the weekend.

Five times!

It was really good sex, too... Until it was over, and I rolled over, and felt that I had somehow managed to dislocate SEVEN ribs. Seriously... Ow. So I have to be really careful about stairs (because any slightest bounce, and my boobs pull on my ribs). And I have no position that's comfortable to sleep in; my ribs are either being pulled apart (on my front or back) or they're being squished together (on either side). Coughing and laughing are also painful.

But, I didn't dislocate my hips! Yay!

And the only other injury sustained was a really bad foot cramp, and I had to manipulate the crap out of my foot before the tendon snapped back into place.

As usual though, with these types of injuries, TOTALLY worth it!

Friday, July 13, 2012

Recovery, and Praise

I've had all of my most problematic joints injected. This includes my left shoulder, left scapula, 3 left ribs, entire spine, left and right SI joints, and both hips. This was done over the course of 4 separate 30 minute appointments. My next appointment, to have everything injected for the second time is on October 3rd, when I have booked a 2 hour appointment to have everything done in one go.

There are 2 reasons for this. First, the two days of really tight, swollen, tendons and ligaments is quite painful. I would rather have the 2 days of pain done and over with, instead of having 2 days for each joint, for a total of 8 days in pain, like I've just had. Second, the immediate tightness causes things to pull on each other, like my shoulder pulling on my neck and back, which caused a great amount of discomfort. I don't want that to happen again.

My Doctor was surprised that I needed to have injections into my scapula, at the bottom, where it connects to the muscle that connects to the spine. This was necessary, since when I bent forward, even with my shoulder being tightly bound to itself, it would still dislocate forward, because there was nothing holding it back. Now, when I bend forward, and let my arms dangle, they're the same length! My left one isn't 3 inches longer anymore! And it doesn't go *slip, thunk* anymore either.

My pain levels in my shoulder have decreased significantly. And this is after only one treatment! My shoulder has only dislocated from being slept on since the injections, and even then, not nearly as bad as it used to.

When I had my spine and neck done, there was a "war of the tissues" going on between the muscles wanting to pull my neck and shoulder toward each other, and the ligaments trying to pull my neck more upright. Because of that, I had a 2 day migraine, which made me feel pretty crappy, more sensitive to light, with the wonderful sensation of having forks in my eye sockets, and an ice pick to the back of my skull. It has since subsided.

I want to shout from the rooftops "Ehlers-Danlos sufferers! Get Prolotherapy!" Sure, it's unpleasant, and sure, it's lots of needles, and sure, your doctor may not think it's even worth sending you for a consult, because they have no idea what our lives are like. BUT... WHAT WE HAVE IS A CONNECTIVE TISSUE DISORDER, WHICH CAUSES OUR CONNECTIVE TISSUES TO STRETCH, AND BECOME LAX. PROLOTHERAPY CAUSES THE TISSUES TO TIGHTEN, AND BECOME STRONGER. Surgeries cause scar tissue, prolotherapy doesn't. Steroid injections may temporarily block pain, but they also cause joint degradation; prolotherapy causes some short-term pain, but actually causes tissues to grow better, stronger, and thicker, alleviating the pain. Physical therapy may strengthen muscles, and allow some people relief, but many physical therapists do not know enough about us not to hurt us in the process. Prolotherapy gives you your tendons and ligaments back, which in turn allows your muscles to do their own job, instead of doing double-duty, and being tense all the time.

More people need to know about this. More people need to be made aware. This is THE TREATMENT. This is our hope. This is the light in the darkness we've been searching for.

Is it a miracle? No. Will it solve everything that's wrong with us? No. But as far as our joints-that-are-hypermobile-to-the-point-of-constant-pain-and-dislocation issues go, this is what we've been waiting for.

The silver lining is looking ever brighter. I am still waiting for an appointment with a cardiologist to have me tested for POTS. That seems to be the biggest issue I've got right now. The constant nausea, dizziness, and incredibly low blood pressure, and the exhaustion. Once I find treatment for those, I think I'll be able to live again.

Friday, July 6, 2012

So Many Needles...

Okay, so the whole waiting thing didn't work.

Once I'd had the doctor stab my shoulder, after a couple of days I could feel that my shoulder was tight enough that it was pulling on other, looser, bits of my anatomy. So I called his office and booked 2 more appointments, for Tuesday, and Thursday this week. During those appointments, I had my entire spine done, as well as my left scapula, and 3 left ribs where they attach to the sternum. And my S.I. joints. I still need to have my hips done, and I'm on the cancellation list for the next available appointment.

I had my neck and lumbar spine done yesterday, and today they are quite sore. The doctor bruised me at one injection point (left S.I.) but it's not causing any extra pain, it's just an ugly bruise. My neck is feeling very tight today, and I had problems finding a position to sleep in last night. But I am sitting straighter, and holding my head in a more natural position than I usually do. I usually crack my neck several times a day to relieve the pressure that I feel, which also allows me to maintain range of motion. Since the injections, that pressure has built and built, and I can't turn my head to the right, as it pulls on some very tender bits on the left side of my neck.

Looking at the injection points on my spine, my mom exclaimed "holy crap your spine is crooked" as it seems to curve about an inch and  half to the right, right before it meets my hips. This is a new curve that wasn't there the last time I had someone look at the curvature of my spine, and I'm assuming it's like that from all the limping I do onto my right leg, causing really asymmetrical pressure.

My wonderfully stabby doctor has informed me that I'm responding well to the injections so far, and that I'm tolerating them better than he had expected. He's also surprised by my ability to spew out medical research, terminology, and "big words" like proprioception without getting tongue-tied. He seems to be quite impressed with my knowledge of how prolotherapy works on the body, and how those effects affect other things.

It's nice to have a doctor that realizes I'm not like some people that Google medical-related things for a few minutes, and proclaim themselves to be educated. He can tell that I actually do know what I'm talking about, and he treats me with more respect than I've ever had from a doctor. He also explains things to me as -not quite an equal- but as though he were talking to someone whose opinions and knowledge were beneficial to him.

So to sum up: I feel like crap, but I also -and more importantly- feel like I'm benefiting from the injections.