rare disease awareness day 2024.

Leap Day is Rare Disease Awareness Day (observed on February 28 during non-Leap Years).

As I’ve often shared here, one of the chronic conditions that has changed everything about my body is Complex Regional Pain Syndrome.

When I was thinking of writing this post, I went back to my original post, in December of 2018, when my left foot was first affected, and I was in incredible pain – but had no idea what was to come.

it seems i have a helluva thing, y’all.

While I knew I was in trouble – and I knew I was in terrible pain, I had no clue that it would last for months – or that it would cycle through the other foot. I did not know that I would be one of the patients for whom symptoms become systemic, nor did I know that I would eventually also deal with CRPS pain in my jaw and face – or that it would later also affect my GI and immune systems. While I read that CRPS brings neurological symptoms – I did not fully appreciate that among them could be headaches, burning sensations over my body, muscle spasms, joint stiffness, and extreme sensitivity to certain sounds and textures and a variety of stimuli.

It really is a whole bag of horrors.

While there are some treatments to help manage CRPS, there is no cure known at this time.

It remains a situation of management – and living in dread of flares.

I am incredibly sensitive to shifts in barometric pressure and the system that came through yesterday, bringing with it rain and a 20 degree drop in temperature has laid me out.

(I also flare very easily when I am overdone physically, overstimulated from a sensory standpoint, or dealing with extreme emotional upset. Basically, my body is delicate balancing act all the time.)

Because I *truly*truly*truly* count my blessings to be ambulatory now from where I have been with my CRPS – regardless of my lingering systemic symptoms – I struggle at times to write at length about it for these awareness days. Thinking back to the beginning of the cycles through my feet – with the relentless pain and my inability to walk – is nothing short of traumatic.

I do believe it is important to talk about CRPS though as it is not well understood – so, for this day, I am going to share some graphics I hope will be helpful as well as links to a few organizations that can provide great information and support for CRPS patients and family members.

First, here is just an overview of the possible symptoms of CRPS. It presents differently in each person.

It is one of the three most painful conditions known in the world – and the most painful chronic pain condition.

Unfortunately, CRPS can become a systemic problem for patients.

There is a certain sensory overload, post-CRPS, that is real and serious and almost impossible to explain to someone who hasn’t experienced it.

What’s worse, there is the CRPS/spoonie brain fog. I can still work and write – and I am grateful to be sure. However, especially since Covid, I require much more time than I used to in order to accomplish the same things – and have to proof them extra as well.