So, I’m actually running a day late for CRPS (Complex Regional Pain Syndrome) Awareness Month – because, honestly, I had the simplest procedure last month that has triggered a flare, bringing just surreal consequences – and it has taken me awhile to get ready to write as I am still very much in the midst of the storm.
Still, I feel strongly about spreading the word each year.
So, here we go.
CRPS is a disease that appears to be autoimmune of the autonomic nervous system. As the name suggests, it brings extreme pain, usually in one limb, at least at first, as well as redness and swelling – and is ranked on the McGill Pain Index as the most painful condition in the world – above amputation without anesthesia and childbirth.
As I’ve said before, mine appeared when I laid down for a nap one evening and woke up in screaming pain with my left foot red, swollen, completely unable to bear any weight or be touched by anything and literally feeling like it was on fire. The pain was unbearable –and untouched even by morphine in the ER, which is not uncommon when CRPS is flared.
This flare lasted for weeks and took even longer to go through the second – less severe – stage.
Then I experienced the same thing in my right foot – equally severe.
Finally, both feet have progressed to what is considered Stage Three CRPS. Where some people may, in the early stage of the disease, be fortunate to achieve remission, if the disease reaches Stage Three, it is usually lifelong and there is no cure.
In my case, I have what is called “cold” CRPS. My limbs that have been affected are literally cold. Cold CRPS is more likely to be systemic – and mine definitely is.
For me, in addition to both legs, it has manifested with late stage changes now in:
– pain that radiates through my jaws and all through my teeth at times
– electric “jolts” that go through my body
– severe systemic fatigue
– massive sweating
– GI issues such as nausea, vomiting, and weight loss
– sharp, severe chest and abdominal pain
– balance issues (I always use my cane, Ellie, when out and about)
– a syndrome called POTS that causes my heart rate to stay really high and is unresponsive to beta blockers, causes me to get dizzy when I stand, and worsens my insomnia, among other things.
I hate to paint such an awful picture – but I do the awareness month posts because it IS truly awful.
Here is some further reading about CRPS if you are interested:
I’ve found that my secondary CRPS is FAR worse than my original autoimmune diseases – and they were enough to deal with.
Also, unfortunately, ironically, this flare started with an endoscopy and colonoscopy to investigate some unpleasant GI symptoms – but the CRPS flare from the procedure seems to have fully taken me down the path to a Gastroparesis that can occur with CRPS patients.
I am having great difficulty eating right now, among other things, and have lost a good bit of weight since my procedures.
With any procedure with CRPS, there is always a risk of it causing a flare – and that’s what happened this time.
So I’ll be consulting doctors today to decide what to do.
And praying hard.
All prayers, good vibes, and warm fuzzies are appreciated.
And, as always, onward.
Be well, everybody. Take care of yourselves and each other.
Grace and blessings.