Chronic illnesses are finally starting to step into the spotlight. People are starting to become more open with talking about them as well as accepting that they are real and not just a way for someone to get attention.
"Reflex neurovascular dystrophy (RND) is a painful condition that leads to severe pain in the joints and muscles in children. The pain may be described as sharp, burning, achy, crampy, a pounding hammer, or cutting like a knife. The pain is caused by a nerve sensitivity whereby the nerves in the body send pain signals to the brain inappropriately. RND affects girls more than boys (80 percent girls). - Children's Hospital of Pittsburgh website." I fall within that 80 percent of girls that this chronic illness affects. I was diagnosed with RND in 2006, however, it took almost two years to be diagnosed with it. I fractured my growth plate in my left wrist in 2004 which "set off" the illness. It is very common for RND to, for lack of a better word, appear after some type of break or injury. I was only ten years old at the time of the diagnosis. Dr.Rosen, a rheumatologist at Children's Hospital in Pittsburgh was the doctor that finally figured out what I had. When I was diagnosed, RND was only 4 years old, which is very young in the medical field, and that's why most doctors weren't sure what I had.
On the Children's Hospital of Pittsburgh's website, it gives a list of the symptoms and diagnosis. They are as follows:
- headaches
- stomach pains
- chest pain
- painful menses
- poor concentration
- memory loss
- insomnia
- ringing in the ears
- swelling
- skin color changes
- skin temperature changes
- dizziness
- loss of appetite
- weight loss or weight gain
- waking in the night
- fatigue
- extended napping
- decreased performance in school
I have had one or multiple of these at some point or another. There is no medication that can help the pain that RND causes. The only way to help alleviate the pain is to "over-work my nerves to help get them back in line," which is how it was explained to me when I was starting the inpatient RND program at the Children's Institute. My mom had to fight to get me into the program and I was there for one week... yes, I said one, when I was told that I could be there anywhere from two week to two months. Needless to say when my mom received a call, after I was only in there for a week, that I was good to come home she was very upset. They said that I was doing great in counseling and with the coping strategies as well as the PT part. So after a lot of crying and trying to tell them that I was not ready to go home, I packed my things and went home.
Throughout the following years, I have been back to the Children's Institute multiple times for outpatient therapy because... surprise surprise, I know my body and I should have been in for longer. I have started to not tell doctors that I have RND because if I do, whatever problem I am having at the moment just gets lumped under that and they don't do anything to help. I've learned to say that I'm ok or I'm good when someone asks how I'm doing because it's too much to try to explain to them what is really going on inside my body. I've learned to smile through almost anything. Most of all though, I've learned to be empathetic and for that I am grateful. While I don't wish this pain on anyone, sometimes I wish people knew what it felt like and how much I do push myself to get through things.
If you have any questions about RND, please don't hesitate to ask me, I'm more than happy to talk about it with you! For those of you that have or know someone who struggles with a chronic illness, I'm here, I know what you're experiencing or watching someone experience is real, I understand, and I 100 percent support you and am rooting for you!