So, it is CRPS Awareness Month – and closing in on the one year anniversary of my diagnosis from Hale – AND I’ve been battling the flare from my worst, worst nightmares.
This post isn’t going to get any blog style points – I’ve just been really out of touch since I’ve been so sick and I want to get caught back up and talk a bit about some new CRPS developments and whatnot.
As I’m writing now, I have Henry snoring next to me and Sara asleep on the other side of him. We have Scrooged playing and we are all settled in for the night.
I know I’ve done plenty of posts about CRPS – but there are some things I want to talk about today that I haven’t before.
(If you haven’t seen those posts, or aren’t familiar with CRPS, this link from The Princess in the Tower contains much helpful information: http://princessinthetower.org/complex-regional-pan-syndrome-crpsrsd/ )
As I was looking through old pictures for this post, I confess that some of this was difficult, both in the remembering just how painful the start of all this was – and also in the remembering that I honestly imagined a very different outcome of this process when it began.
However, as Cheryl Strayed so wisely said, “You don’t have a right to the cards you believe you should have been dealt. You have an obligation to play the hell out of the ones you’re holding.” And, so, ’tis time to stop waiting on this CRPS business to settle down – as it is doing whatever it wants to these days – and get back to my keyboard.
The Beginning Of My CRPS
As with any disease, everyone with CRPS has a different set of circumstances but the initial presentation is almost always severe pain and swelling in a limb – that truly feels like someone has taken a match and SET IT ON FIRE – and which is much worse than any injury that may have actually occurred to that area.
In my case, I have multiple stress fractures in both feet and they are painful but I was accustomed to walking on them.
On December 10th, 2018, I laid down for a late evening nap in my usual state of health and woke up around 11pm with my left foot and lower leg in screaming, burning, agonizing, inexplicable pain. As I wrote in my post a few days later, I didn’t even cry in labor with my third child – such is my pain tolerance – but CRPS pain is a different animal. I was screaming and crying and terrified and my foot would not hold weight.
I was given IV Morphine – which had knocked me for such a loop I didn’t even feel stitches in my head earlier that year because I wasn’t accustomed to those meds – and it didn’t touch it.
Finally, the pain subsided to a level that was still MISERABLE – but I could go home, as there wasn’t much to do, except refer me to my PCP and Rheumy to sort out what was happening to me.
I saw my PCP the next day – and, bless, he wasn’t much help.
CRPS isn’t well known and usually takes a specialist to determine what is happening.
My rheumatologist immediately recognized it and correctly diagnosed it. The diagnosis was later confirmed by my orthopedist as well.
As I recall, the totality of that flare lasted for about two weeks – and I hoped it was over. And I prayed to NEVER again experience the pain of that first night.
However, CRPS, if it comes to stay, is a disease of flares, stages, and spreads, and so much more was coming.
I had another flare in January of 2019 and again in April. They were both absolutely miserable, with intense pain and losing my ability to hold weight on my left foot during the episode, but I did not again reach quite the same level of pain that I did that very first night.
Complications With My Left Foot
Over the summer, my left foot flared horribly again, putting me in my smartchair for quite sometime.
In addition to the CRPS, I developed osteomylitis and had to have surgery and months of antibiotics.
After the surgery, my left foot was doing so well that I was briefly hopefully that my CRPS problems were resolved.
However, that was not to be.
New Stages And Spreads
Unfortunately, in October, my left foot and lower leg went into the stage of CRPS were it has a sort of numb neuropathy type feel – until it goes ice cold feeling, like I’m holding it in a bucket of ice water. When this started, it was so frightening, as the normal feeling has never returned – and now won’t – and the horrible ice bucket pain comes in both legs when I walk or shower or sometimes just because I wiggled my nose wrong.
Intense muscle cramping also comes at times during these episodes.
Then, as I wrote in my previous post, I had just a minor misstep a few weeks ago – and the CRPS has now spread to my right foot and lower leg so that it is now burning as in the first stage now as well.
Also, during this past week, multiple times, it HAS escalated the same horrific pain level of that very first night. And I’ve just had to sit with it. And breathe. And hold on until it calmed down to a more tolerable level.
In addition to the pain, muscle cramping, and inability to walk well at all when this is flaring, I have developed several systemic symptoms:
- Dysautonomia – my heart rate runs amok, amok, amok, amongst other things.
- I had a period of full body jolts that lasted for several hours about ten days ago. Thankfully, that ended as it was so frightening.
- Since I have TMJ in my right jaw, it seems to be acting up there and my lips also turn ice cold and freakishly painful at times. What the hay is THAT about I ask you?
- Sharp, stabbing pains that can occur anywhere in my body.
- My anxiety is much more severe than it used to be. However, I’m not so sure that isn’t unreasonable. When it is truly terrible, I have Sara come up for a slumber party to keep me company and help if I need it.
- Ridiculous sweating is just a part of CRPS. During the night last night, I actually had the WORST night sweat I have ever had. I woke up to my pillow soaked through, my pj’s literally wringing wet from top to bottom, and even my furry foot blanket soaked through. I realize this isn’t dangerous – but, when I wake in so much pain and have to deal with a situation like that as well, it’s a total mess. I had never seen anything like it.
Honestly, I’ve also been struggling to get my head around my mobility device needs – but I’m getting there. With flares, I, of course, need my smartchair – but I’m now realizing that I will likely need my cane even when I’m not flaring now, for safety, with the condition of my left leg.
This is just the reality of my situation – but it has taken a bit to get my head around.
This disease is just absolute hell to deal with.
And, Now, On To The Good Good Things
Even though it is unpleasant, I did want to honestly share what has been going on with me, particularly as it is CRPS Awareness Month and this disease is so misunderstood.
However, I also have some wonderful things to report as well.
First, after a long period of no car because I couldn’t drive Janis any longer – she’s a manual transmission and that simply does not work with CRPS of the lower extremities – last week, my better half gave me the most amazing gift:
Being able to get around our town for errands, even on flare days, helps my spirits so.
And, though most people wouldn’t be excited about bifocal time, when you can’t see, it is exciting:
- One of my stories is being published in a Christmas book and I am so so excited.
- As I have a policy of decorating and starting Christmas in November since I’ve been sick and other life has happened and I don’t postpone joy – I’ve written about this before – I am SO excited for the beginning of the Christmas season in our home. We started Christmas movies last night and I’m going to ask my better half to help me get my room tree and Henry’s tree today. I can’t wait. ❤
- Even when my body won’t cooperate, I keep my mind busy with working on my book and reading and other writing and I’ve just started learning French. And, of course, now I’m back here as well. Especially with my illness, it is so important to keep my mind active and learning new things.
- My doctor made some major med adjustments on Friday that seem to be slowly helping. Fingers and toes crossed.
So, there is much to look forward to – and I’m pushing onward as always.
Be well, everybody. Take care of yourselves and each other.
Grace and Blessings.