Never in a million years did I think that I would be diagnosed with a pain syndrome. Actually, when I was diagnosed, I laughed in the doctors face. "Pain syndrome? So you're saying i'm being a hypochondriac about the pain that i'm in." That's pretty much what went through my head when not only one doctor diagnosed me with this, but two. Little did I know, this disease is actually pretty serious. Even more so, people don't really know what it is, and probably think the same thing that I first did when they hear about it.
This pain disease is called Complex Regional Pain Syndrome, or CRPS for short. Basically, after the onset of an injury or surgery you begin to feel extreme pain well over the "normal" pain limit for that type of injury/surgery. What happens is that the nervous system is actually firing pain symptoms to whatever affected limb or area of the body that you have, and it causes a variety of symptoms. On the McGill Pain Index, CRPS is at a higher level of pain than child birth, cancer, and amputation. Shocking for something that isn't wildly known, right?! Well, I live with this pain every day. On a daily basis, i'm usually in an eight out of ten pain. On a bad day, it's a twenty out of ten. When I was first diagnosed, I was in so much pain that I couldn't leave my bed for two weeks. The farthest that I got was to my kitchen, and nothing seemed to alleviate the excruciating pain that I was in (and still am in.) However, I was told that I had to learn to cope with this pain, or else it could get much worse. By that, it meant that the disease would spread to other parts of my body, and I could potentially become paralyzed or in a wheelchair. I do try and normalize myself and do everyday things like a healthy person would- I go to the gym (when I feel up to it), I can drive, I hangout with friends, and I even painted my room this week (huge accomplishment for someone with my disorder!!)
Granted, I am in a wheelchair when I go shopping, and I can't really do a lot on a daily basis. And yes, I do get looks from people as to why a seemingly healthy 20 year old woman needs a wheelchair, meanwhile they can walk normally once out of it. Spoiler alert: i'm a horrible wheelchair driver! I have extreme limitations for someone my age- just a short drive could potentially cause a flare up, for example. I have to be cautious of what my limitations are, and not work past them for fear that I may not walk at the end of the day. I live off of painkillers and an occasional tens machine. I've also gotten spinal blocks (for those who don't know, a spinal block is a procedure where a needle is injected into your spine that delivers anesthesia to my nerves, directly from the source of the pain.) That hasn't worked, and what doctors have suggested for me as a course of treatment is medical marijuana. Yeah, it's controversial and everybody has their opinions/beliefs on it. However, if something will help me live pain-free, i'm willing to try it.I am currently in the process of getting certification for this, and will be going to a dispensary to purchase medical marijuana once it comes through. My other options (among many) are potential ketamine infusions (the horse tranquilizer, for those who know it as that), and a spinal simulator which is surgically implanted.
Not only do I live in pain, but i'm also developing another symptom: temperature regulation problems. It is pretty much to the point where I have to sleep with a window open and my air conditioner on in less than 30 degree weather, wake up in the middle of the night burning up to take an ice cold shower, and sleep with frozen water bottles on my back, neck, and between my ankles. Other symptoms that I have are tingling sensations on my ankle, ankle discoloration, "pins and needles" feeling from my ankle to my calf, and my leg constantly falls asleep. Everyone experiences this disease differently, so symptoms definitely vary based on the person.
Overall, i'm learning to live with my disease. It isn't always easy, and it takes a hell of a lot of fight for me to seem "normal", but i'm doing okay. I have good days and bad days, but I make the most out of my good days. I'm just your average young-adult warrior who is kicking ass at everyday activities, one day at a time.
