day FOUR; I apologize in posting this in the early morning of November 5th BUT I still remembered to do it! I had a terrible night t0night. Today was up and down pain wise but I was able to get through the day without a second dose of my morphine. I was super tired because I haven’t slept well since October 11th (when I started the ketamine infusion) so I went to bed to read about 10:30.
Within 10 mines of laying down, BOTH of my legs and feet began to REALLY hurt. When the CRPS in my left foot and leg gets REALLY cranked up, I will get intense mirror pain in my right foot and leg. It’s very weird (which CRPS is in general) and also very overwhelming to have the pain cover more parts of my body. The pain was super intense and beyond what I normally experience in terms of there being places that were zapping and burning REALLY intensely as well as muscles tightening and then jerking.
When I hobbled into the bathroom my CRPS foot and leg IMMEDIATELY turned red and became swollen. It just makes no sense how they can look almost normal when my pain is lower and SO red and angry when my pain is way higher.
Then my joints began to hurt and when I say hurt, I mean it hurt to just bend my arm. A lot of my joint pain disappeared last year doing IVIG, the process was slow but it helped. My joints will ache occasionally but its sporadic (thankfully). I haven’t had joint pain that extreme in awhile though to be honest and oh how I forgot how much it hurts.
Then my hands started hurting, something I have struggled on and off since November 2013. At times they have hurt so intensely that I couldn’t grip a pair of tweezers and I ended up taking 3 months off of work December to March 2014 to get them to calm down since my career (master esthetician/makeup artist) demands that your hands stay busy and that your hands are strong enough to give people massages. I found that using my computer for texting made a HUGE difference so they mainly only hurt if I am on my phone too much. They haven’t hurt in quite some time.
The pain scared me. It felt overwhelming to have multiple kinds of pain going on and each kind of pain was a much more intense version…like they each are got “mean body part” makeovers on Maury. Tears rolled down my face as I tried to gather my thoughts and stay calm. While I am “used to CRPS” pain, it has been a year since I struggled with Lyme/Bartonella AND CRPS.
I then took some pain meds and just waited.
For whaever reason it took my pain meds FAR longer to kick in and bring me relief. They can sometimes begin to give me pain coverage within 10 minutes…but tonight time dragged on and on with no relief. Ironic of course given the amount of pain I was experiencing.
Then around 1:30 the warm blanket of morphine ensconced me and slowly each body part began to whisper instead of shout.
I could finally breathe more deeply, I could finally relax and not feel like a prisoner in my own body. My pain has creeped back up some a few hours later, my GIANT dog didn’t help matters by landing on my foot (REALLY!?!?) while he jumped up onto the bed. Thankfully I am tired enough that I think despite the CRPS pain flaring back up, I will be able to give my poor body some much needed to respite.