Explaining what it’s like to live with RSD/CRPS, day after day
When we try and explain to others who don’t live with us, and even sometimes those who do live with us- and often take for granted how exhausting even little things are with this disease, we are often met with disbelief. When you fight this high level of pain on a daily basis it is exhausting, not just physically, but mentally. We all know when I say “FIGHT” the pain I am referring to “Mentally Blocking” the pain all the time in addition to all of the other things we are doing medically to help lower our pain levels.
OUR BRAIN IS ALWAYS ON.
Always aware, always blocking the pain, even when we are trying to sleep.
Which is another reason other than the physical effects of RSD on the limbic system of the brain we do not sleep. RSD effects short term memory, Focus, Concentration. Lack of sleep, high levels of pain add and enhance this problem. If you are trying to explain to a loved one why you don’t sleep, break it down to them in small bites, anatomically-We do not usually get to enter the restorative REM sleep.
To enter that portion of sleep, we have to allow our mental block our self defenses, our self preservation or survival skills against the RSD pain to drop. When we do this, the pain rush overloads our body and it is excruciating and any thought of sleepiness goes right out the door, It may be hours before we can get some semblance of control over the pain again. Usually we sleep because our body passes out from exhaustion. Yes, shuts down. I think that may be an accurate way to explain us RSD’ers and sleep.
This is why sleeping pills and us usually don’t have a high success rate, we only dose or nod off for minutes at a time at best on them. Again this is largely because of the effects of RSD on the limbic system of the brain combined with the constant high pain level.