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.
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