As A Patient...
When a patient has CRPS, it is easy to let the pain control every aspect of his or her life. Why? Out of fear, fear of making the pain worse, when we don't think it could get worse. For too long I let my pain control my life. I let the pain become a person, like the little devil you see on the shoulders in cartoons. Every decision I make is based on my pain or how bad the pain might get. CRPS pain is like a bully, if I let it have that much power over my life, I lose. The most difficult concept that I had to grasp is that there is no cure, only treatment to cope with the pain. The second most difficult thing, that I am still currently working on is taking back my life and being able to stay calm over things I cannot control. The pain psychologist I saw for a short time said that I need to re-self regulate. My body has to relearn when it is in danger versus when it is not. This meant starting and keeping a practical routine for everyday. For example, going to bed at the same time every night and waking up at the same time every morning. Keeping a regular work schedule, snacking every two hours, setting time aside to practice breathing and de-stressing. The re-self regulation method works if you are committed to the schedule that works best for you and your body. Of course it is way easier said than done, I think it's worth a try for everyone with CRPS to lower the pain levels or keep the pain at bay from going up any higher.
One thing ( among others) that I found extremely frustrating when I had doctor appointments, every patient is different, but I was treated as if it were any other injury. I was misdiagnosed about three times. It is already difficult to put into words or on a scale what we are feeling and trying to understand, please do not treat us all the same. I am not saying all doctors have done this, but I have had my fair share of experience and have learned which ones I can trust, and which ones have good intentions but think pain killers to mask the symptoms is the only thing that they can do to help. Even though we are going through this illness/ disease, which ever you prefer to call it, no one knows your body better than you do. There are going to be times that you will have to scrap up the energy and the courage to advocate for yourself and have a support system of loved ones around you.
The emotional and psychological hardships of this chronic illness are something for major concern and what I found to be the most understated. In my experience with CRPS, it can make me feel like I am going crazy or paranoid. It often feels like people I talk to think I am either making it up or that it can’t be “that bad”. This feeling of paranoia adds to the depression and mental fatigue that is already felt by many of us. Without the support of my loved ones to ground me, I am not sure where I would be right now. Other than the paingry (anger from pain) facial expressions or what is termed as “resting bitch face” is the only immediate physical way this pain can be seen.
CRPS can also spread to the organs, oh yes, this is the illness that keeps me ill. As much as I try to take the appropriate steps to keep the CRPS from spreading, it has still managed to flare in other parts of my body. I don’t want to think about the fact that this can spread to my organs. Uh oh, here comes the paranoia again, the psychological taunt teaming up with the depression to create one powerful villain. This may be a mental rant that needs to be typed but if I hold it inside then I am wasting the anger I should be focusing to overcome this and giving into the demons of my nervous system. So I'll move on... for now.
In July of 2017, without warning, I had a full body flare, no words could describe this pain. I was at work, and before I knew it I wanted to scream out loud and couldn’t really move. I asked my husband to come pick me up and take me to the ER. The only thing they could do was give me a powerful shot to relieve the pain (or at least bring it down) and a prescription for Percocet. That day I decided that would be my first and last visit to the ER because of CRPS. The only thing that hurt me more than the pain itself was watching the look on my husband’s face and my mom’s face. I never wanted either one of them to ever see me so weak and vulnerable. I could tell they wanted to help, do anything but sit there and wait for doctors and nurses. I didn’t know how to comfort them and tell them I would be alright and this would never happen again, but I couldn’t because I was scared too.
A few months past where I was taking Norco and/or Percocet at least 3-4 times a day and sometimes twice a day plus my regular prescriptions for depression and pain. I guess in a way I was addicted, addicted to feeling myself again with no pain. I felt like the hiking, adventurous dancer I once was. However, it was a quick fix to get through the day and the side effects are awful. My body was also assimilating to the pain killers, so after awhile they stopped working or didn’t work as well. I also began to be afraid of the damages to my liver and kidney that I might have been causing. I watched as my aunt slowly died from complications of the liver, along with other medical issues, because of the mixture of meds she was taking, drinking and by the time she was in the hospital they couldn’t help her, the hospital staff just said that all they could do was make her comfortable. Making her comfortable was challenging for the medical staff, there was only so much they could do. I never want to go through that or make my family watch me go through that.
On that note, CBD (cannibidol) to be more specific, saved my life. The greatest appeal is the non-psychoactive effects. I am still learning more and adjusting a regimen, but if it weren’t for the CBDs I started, I would have made another trip to the ER by now. It also helps with the depression. It works with the natural endocannibinoids that your body already naturally produces to help the body heal. I talked to my primary doctor, I trust this one the most, first to make sure it was the right step for me.