I have mentioned before that I belonged to a support group, and that nobody in the support group believed Maya's CRPS diagnosis was correct.

That is NOT to say that we claim she did not experience pain. There are many conditions that are primarily pain conditions, and many conditions that include pain as a symptom. We simply do not see Maya's presentation as being consistent with CRPS. And neither did any doctor who examined Maya except two doctors that run ketamine clinics that are self pay, meaning they get money up front, no haggling with insurance. And one very highly paid "expert" never examined Maya when she had symptoms. 

To explain every reason the majority of long term CRPS patients were puzzled by Maya's presentation and diagnosis would take a book. But what is behind our skepticism is that CRPS symptoms develop over a period of time, and there are well known physiological reasons behind the presentation of symptoms.

There is one important thing that isn't known about CRPS - and that is WHY it happens.

But there is a hell of a lot known about HOW it happens, the mechanisms that cause the symptoms, and WHY many of those symptoms take a long time to develop.

Right now, you can find a great deal of more detailed information about CRPS. But, when I developed mine, there was NOTHING online about any kind of weird nerve pain condition. I searched regularly for information, typing in my symptoms and searching for lists of different nerve pain conditions to see if anything came up that matched my symptoms, but...nothing.

At the time that Beata/Maya were developing her presentation, there were web pages that explained CRPS, but during that time frame all you could really find were pages that gave two or three paragraphs that basically described a fully developed case of CRPS. And this is the reason that Beata/Maya was unable develop a CRPS cohort that was convincing to actual CRPS patients. Beata read a description of symptoms, had no knowledge of the medical reasons behind each symptom, so they just demonstrated a list of symptoms overnight. Which is not how it actually happens. She was in a wheelchair within at least 3 days of an "asthma attack". Whatever symptom caused her to be in a wheelchair, be it dystonia or muscle weakness, somehow developed along with the pain within 3 days.

No.

If you search specifically for photos of CRPS dermatology and restrict for "prior to 2018" you will see depictions of CRPS dermatology conditions, you will find things like the ones I have posted.  Around 2024 and afer is when you start seeing all these photos and depictions of CRPS that match Maya's presentation. 

So, what are CRPS "lesions" REALLY about? Can people with CRPS at some point end up having some kind of skin anomaly that somewhat has the appearance of scratches? 

Yes. Sort of. But it isn't a "symptom". These are...scratches. And they happen the way everyone else gets scratches. Bump into something, walk by a leafless bush, take a hike in the woods and go through an area that is overgrown. 

But....with CRPS your skin CAN beome more prone to getting scratches and tears.

But it takes a very long time for the skin to reach that point, and the intermediate skin conditions that you go through to get to that point are FAR WORSE and yet somehow Maya skipped over that whole progression of skin edema, discoloration, eventually thinning of the skin.... to jump straight to.....tiny little scratches.

You don't just get little tiny scratches when you have CRPS for no reason. It's not like they just appear overnight simply because you have this condition.

First... these little scratches aren't even considered to be symptoms of CRPS. They are considered to be...scratches. You are simply getting the scratches more easily than you used to get them because your skin, ***over a long period of time***, has become thinner because of different, and far more severe skin conditions which *are* symptoms of CRPS.

Not everyone who gets CRPS gets swelling (edema) and skin discoloration. But, the ones that do, can end up with thinner skin. Over a long period of time of experiencing periods of edema (swelling caused by excess fluid trapped beneath the skin). This happens in the extremity where you have CRPS, it is localized. Because it's localized and can happen on a regular basis, over time your skin in that area can become thinner. 

The Mayo clinic describes the process like this: Edema causes your skin to become thinner over time primarily because prolonged swelling stretches the skin, disrupts essential blood flow, and impairs the delivery of nutrients to the tissues. This compromises the skin's structural integrity, leading to weakened layers, dryness, and vulnerability to damage.

Thinner skin tears more easily. So, if you have CRPS and if you experience long periods of edema, your skin can get thinner to the point where **you more easily receive little scratches and tears**.

But those scratches are not part of your CRPS. They are scratches, which her family sells to the public as "CRPS lesions", as if they just magically appear for no actual reason except "I have CRPS, therefore little scratches spontaneously appear on my body". No, edema can spontaneously appear if you have CRPS. Skin discoloration spontaneiously comes and goes with CRPS. But those symptoms are very difficult to falsify.

I labelled this as Part One. I may post more on this topic of her presentation, one symptom at a time, and why it wasn't convincing to anyone in our support group. 

Beata read a few paragraphs about CRPS which didn't give her enough information or go through the whole description about how and why different symptoms form and over what amount of time. She didn't know any of that, so she encouraged Maya into a list of symptoms for an immediate presentation. 

Maya's CRPS Lesions - Part One Why Many Long Term CRPS Patients Seriously Question This Diagnosis - Kowalski vs Johns Hopkins All Children's Hospital