On Saturday, I felt an odd SNAP in my left foot. It felt like a bone breaking, another one. That was followed by intense fatigue so I tried to rest as much as my body wanted since that is the foot that my Complex Regional Pain Syndrome (CRPS) started in and I certainly didn’t want to anger it.
(I planned to call my orthopedist and have it checked on Monday.)
Well. . .
At 3 AM yesterday morning, I woke up with a full CRPS flare in my left foot and lower leg AGAIN regardless of my efforts – just like it started the first time. While incredibly painful, at least I did know what was happening this time – so it wasn’t as terrifying as before when I had no idea what was going on.
I called Sara up to help me get my nerve medications and took them as well as Tylenol Arthritis and Motrin and Prednisone.
And then I waited.
While the medications did take a bit of the edge off, that is really all they can do (but I will certainly take it).
My left foot again is excruciating and walking is so so difficult. I began taking the tiniest of steps with my walker to get to the bathroom and crawled through the shower to get myself ready to go to the doctor.
When our local urgent care opened and we had ourselves together, Sara and I went. Of course, our usual doctor wasn’t there. 😦
So I hobbled in on my walker with a Birkenstock on my right foot and a sock on my left (as that was all I could tolerate at that moment) and asked the physician working if she was familiar with CRPS. Of course, she said yes. So I told her what happened Saturday and that I had woken up to a horrible CRPS flare – and obviously was having serious difficulty ambulating. I also told her that my foot was incredibly sensitive and not holding weight well at all.
- That I needed an ortho boot on my left foot – at which time I pointed out that I couldn’t even tolerate a Birkenstock sandal so a boot was out of the question.
- That my shuffling in-agony self go to an outpatient facility for x-rays and come back as their x-ray machine was down. Umm, no. I was just not able. I barely made it into their clinic as I was.
- She then began POKING on my foot and asking “does this hurt?” – and I almost had an episode right there.
I’m still having to learn as I go about CRPS – more on that later – but there are a few things I became aware of VERY quickly with my first flare that the good doctor obviously knew NOTHING about, like the allodynia that is one of the primary characteristics of CRPS, which is incredible pain caused by things that normally wouldn’t cause pain at all.
With my affected limb, my left foot, when it is flaring, touching it or placing it on a cold floor or air blowing on it or any weight applied to it are excruciating. Changes in pressure hurt as well – it causes stunning pain to lift my foot off the floor after it has been resting there for a moment. It is just that tender and hypersensitive.
Even when I’m not in a flare, I have to keep it under a blanket at home when I sit and rest so my fan doesn’t blow directly on it and I wear socks to avoid floor issues. It has to be handled with care.
Needless to say, when the doctor suggested a heavy boot (while I was only in a sock in 30 degree weather) and then POKED my foot, I again inquired if she was familiar with CRPS.
At that point, she said, “Well, I don’t see many patients with it, but I do know how to treat it.”
Ummm, NO, that answer doesn’t work for me. And, no, you clearly don’t know how to treat it.
But I was not rude or ugly.
I simply said, “I’m sorry, we’re going to need to go to the emergency room.”
The doctor did try to talk us out of it – but that wasn’t happening.
At that point, my beautiful bestie came, on her off day for the holiday, and picked us up to give rescue (because she is amazing), ❤ and we headed for the ER.
Thanks be to God, there we were assigned to a resident who actually DID know what CRPS is – and was only touching my foot to check pulses and what not.
They were very busy – but still kind and thorough.
They x-rayed my foot and also checked for blood clots in my leg as I managed to flunk the blood clot screen (my scan was fine as expected but I really appreciate them being cautious).
It turned out that the SNAP I felt was not a new break – but some crazy part of CRPS, with nerves and blood vessels. Yikes.
I still have so much to learn about this disease – but I was incredibly grateful for knowledgeable help.
They discharged me with meds and follow up instructions and I now know just to start there instead of urgent care when I absolutely have to be treated right away.
We then went and grabbed a bite of food – props to mah bestie and Sara for being seen with me in public as I was truly a vision of loveliness 🙂 – and came home.
Since then, Henry and I have been in our spot, all cozied up. I’m in my super fuzzy socks from Santa, with my foot carefully wrapped, trying to rest it as much as possible.
I have a little app on my phone that is a calendar countdown for different dates – and the next one it is counting down to is my 40th Birthday:
I wish I thought my foot was going to be magically healed in the next 19 hours – but it doesn’t seem so. And that will just have to be okay.
I am going to celebrate and read all the books and drink all kombucha and watch all the John Mulaney and have a fabulous day regardless.
Sometimes we have to make our own sunshine.
Be well, everybody.
Grace and Blessings.