I was holding off on writing this post until I had a more definite answer, but I don't know that that will ever come.
One of the joys **sarcasm** of EDS is having a lot of test results come back negative, even though you are symptomatic. For a lot of people, "negative" is fantastic news! Negative often means something so minor it's not showing up on any scans, and will most likely heal with time and rest.
It's not that I want to be hurt, but being in pain without a diagnosis or healing is far from spectacular.
Meet exhibit A, my foot.
This story goes all the way back to Fall, in the last couple of weeks in September.
After a usual night of teaching (5 hours), I got home and took off my shoes. I stepped onto my foot and felt a deep throbbing pain. It hurt doing nothing, but hurt worse if I put pressure on it. It was 10pm, so I thought I would just go to sleep, wake up and the pain would be gone. HA. The pain didn't go away. Pain doesn't really stop me though, so I continued teaching for another week without bringing it up.
At my next weekly physical therapy appointment, I brought up my foot. She assessed it, used a tuning fork (an instrument that can be used to detect fractures), and then she made a face at me that told me everything. "Really?? It's broken??"
She said she suspected a metatarsal stress fracture or stress reaction, but said let's just start with an Xray and go from them.
Went to the doctor for the X-ray, and
came out with a walking shoe/boot. Findings: negative. I was told stress fractures can take time to show up, so we were going to treat it like one even though nothing showed up.
Spent a week in the shoe but my foot felt worse. Got upgraded to a hefty boot. As much as I was adamant about not getting a boot, I was impressed how much better my foot felt in it. My stubbornness didn't win.
The picture is from our Animal Day Spirit Week at the studio. I had to be a zebra of course!
Second X-ray: negative
Still nothing showing up, so let's do an MRI.
MRI: negative
Meanwhile, my foot was still hurting, I was teaching in a boot which made my hip labral tear pain flare up, and I was still being told there wasn't a clear answer. Luckily I have an amazing physical therapist who kept assuring me that I wasn't making it up. I just always get to be a mystery!
Maybe the MRI needed to be done with contrast...
MRA: negative (ok they noted edema aka swelling, but it wasn't even where the pain was)
Funny Side Story: when I was getting the injections into my foot for the MRA, the X-ray (used for guidance to make sure the fluid is going into the joint) turned off. The doctor had to hold the needle in my foot and we had to wait 3 minutes for the system to reboot. Luckily needles don't bother me and he was funny and held the needle very still.
What the heck was wrong with my foot?! This wasn't the first time imaging has failed to work for me (cough cough... my 70% torn rotator cuff that didn't show up on MRI), but I was feeling so disheartened.
November 12th I got to ditch the boot. My hip was hurting too much, and it had been long enough to protect my foot if something was secretly fractured. I had gotten nice a pair of nice Hoka sneakers that I wore religiously to try to continue to support my foot and have enough height to counteract the boot (when I had it).
Out of the boot, and still in pain, I just continued to deal with it. My PT noticed that my cuboid (foot bone) kept getting subluxed and stuck. She would put back in place and tape it when I saw her, but by the next week it was out again. This is an EDS thing.
She suggested I try prolozone injections.
Prolozone is a technique that combines the principles of neural therapy, Prolotherapy, and ozone therapy. It involves injecting combinations of procaine, anti-inflammatory medications, homeopathics, vitamins, minerals, proliferatives, and ozone/oxygen gas into degenerated or injured joints, and into areas of pain. This article reviews the nature of what medical grade ozone is, how it works in biological systems, and how it can be used to regenerate joints and other damaged tissues, and to alleviate pain.
Journal of Prolotherapy
When I met the doctor he said my cuboid was out, and a couple other things that I forget now! Before the injections he put them back in place.
I don't enjoy injections (who would?!), but at this point I've had so many they don't really phase me. This time it was 30 needles to the foot.
He just kept asking if I felt it because I was just chatting away. Yes, of course I felt it! He said you should watch football players get this done, very different scenario.
It's super sore after the injections. I told my 11 year old class I had to take it a little easy because I got shots in my foot and explained it as it feels like I got 30 covid shots in my foot. They said "Why do you always get so many shots?!"
I got some improvement with prolozone. The pain wasn't gone, but it got a little better. I was supposed to get a second round a week later, but due to snow (It's December by now) my appointment got cancelled - even though I showed up because I didn't get that message😂. Then, due to the busyness and holidays, I couldn't schedule until January 5th.
In the meantime, my foot slowly started hurting more again. Bummer. The increase in hip pain from the boot also never went away.
I had two weeks off of teaching for our Winter Break and my foot got slightly better again. The hip is another story.
Well three months from the start of the pain, now it's January. I finally get another round of prolozone injections in two days! I'm really hoping this puts an end to the foot pain. That would be a fantastic start to 2023.
Fingers and toes crossed!! 🤞 🦓💕
Stay Kind. Be Brave. Much Love.
Sami