Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Pain Nourishes Courage ~Moore

Written by Katie. Posted in Ehlers-Danlos Awareness, Prolotherapy

Yesterday Brad and I took off for Mishawaka for another round of prolotherapy.  I was so exhausted, having gotten home from the Madonna concert at 3, and then getting up at 7 to leave.  To say I was a mess would be an understatement. I just kept telling myself that I only had to function a total of an hour and a half while I was with Dr. Cantieri.  After that, I could crash all I wanted.

And, crash I did.  I definitely broke in the backseat of our new Escape while Brad drove, sleeping all the way there and all the way back.

As far as my appointment, I am not going to sugar coat. When I arrived, I was in so much pain from standing and dancing at the concert.  This made my prolo treatment a tad bit more difficult for Dr. Cantieri.  As he was examining me it was hard for him to determine whether my pain spots were “Madonna pain” or “regular pain.”  As he mapped out my back, neck, and ribs, I would say, “Madonna” if I thought it was pain that would go away after some recovery, or I would say, “regular” if I thought it was my normal EDS pain…

Hold that thought.

Is there such a thing as normal EDS pain?

Anyways, Dr. Cantieri laughed and said, “In all my years, I have never had anyone with ‘Madonna pain.’  I guess there’s always a first.”

I’ll let the following pictures do most of the talking…as you will see I ended up having shots throughout my neck, jaw, upper back, and ribs.  I will go back in 8 weeks for more; the longest I have gone in between treatments so hopefully my body will hold up okay, especially through the holidays.


People always ask me, “Why do you do this to yourself, again?”  My friend Ila described it really well to someone the other day.

Her post:

Prolotherapy is when a proliferant, such as Dextrose is injected into ligaments and tendons. This causes the brain to be signaled of a massive injury in that particular area causing the brain to send a massive numbers of fibroblasts to the area. This creates intense inflammation and the fibroblasts make new and “healthy” collagen to repair and strengthen the ligaments and tendons. In EDS patients, the collagen is not “healthy”, it’s still defunct but at least it’s defunct new collagen and not old and worn out! In non-eds patients, it takes about 3 treatments for a ligament or tendon to be repaired, in EDS patients, well, we [could] need it for our lifetime.”

I do it so I am not a bobble head.  So I can stand up and sit for more than a few minutes.  So I can feel like my body is glued together.

Yes, the pain is there, but like the second part of the above quote says, “You can’t be brave if you’ve only had wonderful things happen to you.” ~Moore

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Comments (2)

  • Tonya


    How do you keep doing do much?! I dream of being able to going to a concert & dancing even if it means crashing after. Arent you glad youre able to go to the concert though. I don’t know how I’ll ever get there but I can dream.

    Eds-ers needing things for a lifetime. Sigh. This is kindof one of the things I have to talk to my dr about this week. I seem to progress slower than even his other patients. I don’t know why but i don’t think I should be penalized for it.

    I also want to talk about pain with him. I haven’t brought it up before except for telling my exercise phsyio my muscles always hurt. A year of working with them & I still have a lot of muscle pain. Like I consistently do all my crunches why after a year are they still killing me at the end of three sets?? I don’t think I need prolo but somethig and I’d like it to be other than a pain pill. Plus my lower back has really hurt this week. No clue what I did to it but with EDS there’s always this fear that a pain that lasts a few days is going to be the new normal. I’ve been using a lot of bengay but somehow I built a tolerance to it and it doesn’t work now 🙁


    • Katie


      Hang in there Tonya! Let me know if I can do anything from afar. I am glad you are being persistent and proactive, asking questions and seeking out new treatments. You are in my thoughts. Please keep the faith. Hugs, girl.


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