Can anyone hear me?

[RVInit]

Ok, so I finished feeding mom and hopefully she will settle in long enough for me to post why I have suspicions that Maya doesn't have CRPS. She may have pain, but I don't see what i expect to see with any kind of severe pain. Not all pain is the same level. And not all nerve pain is the same level. If you check this link you will see that CRPS is the worst pain so far ever discovered. After shingles nerve pain comes in at half the level. Even though it is pretty darn uncomfortable for the person who has it. But even that person cannot possibly comprehend CRPS. Which plays into why I seriously doubt that Maya has CRPS.

CRPS has two types. One type is caused by soft tissue injury. And example would be you sprain your ankle and as it's healing for some reason you can't understand your pain is getting worse and not better. Type II is when the injury involves nerve tissue. Either way, it starts with injury of some type.

Maya's parents describe asthma, stomach ailment, sinus infection....then eventually she's diagnosed with CRPS. Whut? Unless they are just forgetting to mention that oh yeah, she sprained her ankle, I'm puzzled how she could end up with a CRPS condition. Because it starts with INJURY of some type. Not just "sickness" or "infection". Injury. And they make no mention of any injury.

More than anything is her disposition in two different situations where she is not being treated for severe pain.

Pain originates from some part of your body, but you experience the pain in your brain. If you have severe pain, but somehow your brain is put "on hold" you will not EXPERIENCE the pain. The pain signal may be present, but you will not EXPERIENCE it. That is basically how pain medication works. It does some magic in your brain to prevent your brain from TELLING YOU that you are having pain. Or at least telling you that you have only a small amount of pain.

Because it's your brain that experiences the pain, anything that is done to cause the brain to do "other things' will automatically divide the attention between the pain you are experiencing and the other thing that your brain is having to do. This is why I have mentioned at other times that I keep myself very busy all the time. It is precisely because the more OTHER activity my brain is having to do, the less I EXPERIENCE the sensation of pain. It's still there. And as soon as I stop the other activity, I become VERY AWARE it's still there. The whole key to it is keep the brain as occupied as possible with anything other than the pain.

This is why when people are experiencing severe pain they will shift around, roll around, sway back and forth, or simply WALK. Even just walking uses brain activity. Your brain has to send a signal to your nerves to make your muscle contract to move your legs. As soon as you stop, the level of pain you were experiencing goes back up.

A person who is experiencing any level of pain will shift, move, etc. Take a gander at the McGill chart again and convince me that some with CRPS level of pain can simply sit in a wheelchair and mope and say "I have pain" but there is absolutely no movement in the body even though they are having the worst pain known to medical science. No. Way. Even in her hospital bed, while NOT receiving treatment for the level of pain of CRPS, she is not grimacing, rolling back and forth, rocking herself, Shifting around, etc. She is laying there gently playing with dolls.

So, if you haven't seen the documentary or watched the trial, the hospital sent a psychologist around and they basically determined that given all the factors, including the mother's behavior, the likely thing going on is Munchausen's by proxy. I failed to mention that, and wanted to mention it because I wasn't just trying to do my own diagnosis. I simply think that between the two, based on my experience and knowledge of CRPS and having been forced into having a pretty good understanding of how pain works, I think MBP is the more likely of the two. I don't believe she has CRPS. She may have some pain, she may have some real medical issues. But she is not exhibiting anywhere near the level of pain someone with CRPS would have.

Just a side note to also understand the kind of toll that CRPS level of pain has. I had a hip replacement surgery at age 40. That is how I ended up with CRPS. During this time we hired a new Admin Assistant. Due to limited office space, and because I am able to focus and work regardless of what is going on around me, I volunteered that they could move the Admin Asst into my office. She met me AFTER I was stricken with this condition and BEFORE I received adequate pain management. About two months after she started working in my office was when I finally met the pain management doctor that ended up helping me.

On the first visit he told me "you are not leaving my office with a prescription for pain meds". I answered "I am OK with that. All I want is a solution to my pain problem, I don't care WHAT that solution is, I will do anything that works. All I want is something that works". This is why he was willing to continue with me. Turns out that he uses this tactic to just get rid of people who are seeking pain meds. So he told me he could try a sympathetic nerve block. I said I am game for that, can we do that right now. He said no. I nearly burst out in tears. I begged him can we do it tomorrow. When I burst out in tears he looked at me, looked down at the chart and said "you are 40 years old, is that right??" and I could tell he looked kinda puzzled as he said that. At the time it went right over my head why he was so puzzled that I was 40 years old. He agreed to do the procedure the next day.

So, I show up for the procedure. I am in the room, get on the gown, he comes in the room and has me lay face down on the table. So I can't see him while I'm laying face down. He starts to explain what he's going to do and as he's explaining he gently puts his hand on the area where I have the most severe pain. I was not prepared for that and I came off the table. I came off so fast and hard I ended up on the opposite end of the room about 40 feet away. He was absolutely gobsmacked and said "THAT hurt???????" Again, I burst into tears, partly at the frustration that NOBODY WAS LISTENING TO ME. How the fuck could he ask me if that hurt. I had been very specific about what the fuck was going on with me.

NOW, he started listening to me. He asked me all kinds of questions and it was very clear that he was actually listening to me because every time I answered him he asked a completely logical new question that made me see... FINALLY I was in front of a doctor that actually was now listening to me. He was very puzzled about why I am having this kind of severe nerve pain after what seemed a successful hip surgery. But he believed me. And was willing to try his best to figure it out. I went home with a prescription for what turned out to the first of a series of pain meds that he was willing to try to see if he could bring it under control while he figured out what the hell was going on.

I got home with the pain meds in the afternoon. I did not go back to work that day. I took a second dose before I went to bed. My prescription was for 3 doses per day. I took a dose when I woke up in the morning. Then I went to work.

When I walked into the office, my coworker, who had worked in an office with me for two months at this point, said "May I help you?". I laughed and walked over to my desk. She came around, told me that actually this is "______'s" office, can I help you? She did not recognize me. She went to get my boss because she was flustered that "someone" was just helping themselves to someone else's computer. My boss came into the office and I will never forget the odd way he looked at me. And he was really really smiling.

When I got home that night I was in the bathroom and after washing my hands I looked up and saw myself in the mirror. Again, burst out in tears. For the first time in eight months as I looked into the mirror instead of an 85 year old looking back at me, there was my previous 40 year old self. And that was with a medication that was so-so. Eventually we hit on a better one, but that first one initially saved my life.

I have now seen video of Maya in several situations, untreated, simply not having any appearance of having gone through, or being in, the hell of CRPS.