Emalie’s Fight Like a Girl Story (Reflex Sympathetic Dystrophy)

May
24
2013
Orange Ribbon

In April of 2010, two days before a big dance competition, I was in gym class playing street hockey. A girl in my class hit me repeatedly in the foot with her hockey stick causing a small stress fracture. But, I still danced at the dance competition that weekend, which made the injury even worse. I was in a short boot that was trying to fix the fracture. The pain seemed better, so I danced at another dance competition and at a two day long dance recital.By then I was put in a cast because the doctors believed I had pulled/torn tendons in my foot. Over the entire summer I was in either a cast or a boot.  I started my first day of 8th grade in a cast. On October 27, 2010 I went to a foot specialist who then diagnosed me with reflex sympathetic dystrophy (RSD/CRPS). It was a devastating moment. I was in physical therapy for a long time. I took so many medicines that made me so sick. All I wanted was to know that someone else knew what I was going through. I felt so alone. Whenever … [Read more...]

Jasmine’s Fight Like a Girl Story (RSD aka Reflex Sympathetic Dystrophy)

Jan
09
2013
Jasmine's Story (RSD) LR

Today I am going to tell you about my journey with RSD (Reflex Sympathetic Dystrophy). RSD is a chronic pain condition that is a result of dysfunction in the central nervous system. The nerves affect blood vessels, skin, bone, nerves, and tissue. RSD changes the skin, muscles, joints, ligaments, and bones. RSD is caused by fracture, sprain, or surgery. Even an injury as small as a spider bite can cause RSD. RSD is the highest ranking on the McGill Pain Scale, worse than child birth and amputation of digit. Some symptoms of RSD are: deep burning excruciating pain, swelling, increased sensitivity to touch, joint pain, color changes (red, blue, molted), temperature changes (hot/cold), skin texture changes (shiny, thin, sweaty). Motor system dysfunction symptoms include: Muscles spasms, tremors, reduced motion, and weakness. RSD can spread to a wider area including your whole body, anywhere where there are nerves. In May 2010 I was at softball practice. I was playing 2nd base and my … [Read more...]

Kerry’s Fight Like a Girl Story (RSD aka Reflex Sympathetic Dystrophy)

Jan
22
2012
Kerry's Story (RSD) LR

In 2000, when I was 13 years old, I was running pre-season for cross country…my FIRST year in high school!!! During a practice, I twisted my ankle, but finished the practice before finding the athletic trainer and talking with him. He told me to get an x-ray and stay off of it for a week before trying to run again. The x-ray came back negative and I began high school on crutches, just as I was told. A week later, the pain was worse, NOT better. I went through a series of MRIs, more x-rays, bone scans, etc. Nothing was coming back with any reason as to why I was in pain. I now felt as though I was on fire, my foot was swollen, and quite discolored. After about 3 months, my pediatrician ran out of ideas and sent me to a pediatric orthopedic about an hour away. After talking with me, my mom, and looking at my foot for about 5 minutes, he diagnosed me: Reflex Sympathetic Dystrophy. That’s quite a mouthful of jumbled words with ZERO meaning for someone so young. He explained it to … [Read more...]

Tracy’s Fight Like A Girl Story (RSD)

Oct
22
2010
Tracy's Story (RSD)

My story begins in 2001 when I went to the ER for kidney stones. The IV I had did something crazy and I now have reflex sympathetic dystrophy. Since then, I have also been diagnosed with ankylosing spondylitis, fibromyalgia, autoimmune hypothyroidism with adrenal fatigue, as well as parry-romberg syndrome. I have started a support group here in Oklahoma for RSD and I am also trying to get a bill passed here to get RSD more recognized so, yes, I am fighting for myself and, for the past four years, I have had to really fight being told that nothing was wrong when the whole time I was hypothyroid and had adrenal glands that were not functioning.  So stand up for yourself and be heard. The PRS is another whole story. The left side of my face has caved in and is very embarrassing so, on top of being in pain 24/7, my face is ugly. Kids even stare at me and I cannot find a doctor here to help. So I just keep fighting. Along the way I am trusting that I still have the fight in … [Read more...]

Don’t Judge a Book By Its Cover….

Sep
23
2010
FLAGBLOG4

Can you tell someone is a serial killer just by looking at them? Can you pick a millionaire out of a group of people all wearing the same exact thing? The answer to both these questions is a resounding NO! So why is it that people think that to be sick you must look a certain way?  I am so sick and tired of being judged because I don’t fit peoples description of what someone who is as sick as I am should look like. I have a few illnesses, RSD (Reflex Sympathetic Dystrophy), EDS (Ehlers-Danlos Syndrome), and CAV (Coronary Artery Vasculitis). The EDS is both Vascular and Hypermobility types. The RSD is full body.  There are days when I am just fine, days I walk with a cane, a walker or days I am bedridden. I can start out fine and suddenly lose my ability to walk. Such is the case last Friday when I was having a rather good day health wise. I went to fill a prescription and while walking through the store my ankle suddenly dislocated and I couldn’t walk so my husband had to … [Read more...]

Your Body Knows Best!!

Aug
27
2010
EKGBody

Greetings and Salutations to all my FLAGC members!! I hope you are all feeling well. I have been a bit under the weather (yes I know you are stunned by this shocking revelation! LOL!). Last week I decided to go to a cardiologist because my blood pressure was a bit high, for me anyway…I gauge it by my monthly visits to my pain management doctor and noticed that my systolic is always between 106 and 117 and then it suddenly jumped to 143 two months ago and 187 this month! I was a bit wigged and even though the pain management nurse and PA told me it was nothing to worry about I just felt my body saying “Something’s not right…AGAIN!” My body and I have lots of conversations and I trust my body more then I trust people with fancy degrees! If there is one thing I have learned since I’ve been sick, it is that YOU MUST BE YOUR OWN ADVOCATE FOR YOUR HEALTH! Well sure enough, my body was right! As the Doctor looked at the results of my EKG he suddenly turned and said “You … [Read more...]