Bethany's story

My name is Bethany and I am sixteen years old. I live in Western Pennsylvania and I'm a junior in highschool.
My experience with RSD has been a lot different than other people with RSD. I also have Ehlers Danlos Syndrome (Classic and Hypermobile type), severe bilateral polyneuropathy, Fibromyalgia and Osteoporosis. A lot of my health problems come from being on heavy-duty medications as a small child.
I got my RSD from multiple leg injuries and a knee surgery when I was about nine years old. Primarily due to the fact that I was not properly diagnosed until I was about thirteen; RSD pretty much took over my life. When I was ten, it spread to both legs and I could not walk for about eight months. I went from doctor to doctor but they were no help. My mom and a really great physical therapist helped me get back on my feet. I went through about a year and a half of "remission". I still had pain and swelling but I was completely mobile.

After an auto-immune reaction to a tetanus shot when I was twelve (close to being thirteen), I was in the wheelchair again. This time, I was paralyzed from hip to toe in both legs. For almost a year I seriously just bounced from hospital to hospital, trying to get better. I just kept getting worse. I went to RSD programs that left me more sick than I was before I came in.
A year later, I was still very sick but not sure what to do about it. Other than physical therapy, I took a long break from all things medical.

After two years of being extremely sick; I decided I couldn't take it any more. The pain was making me crazy and I didn't want to take oral painkillers because I was afraid of what it would do to me (I have had a lot of medication reactions). I went to Cleveland Clinic and I was admitted into their RSD program. I had a Tunneled Epidural Catheter (TEC) put in for pain managment.

Erikka and I were room mates and I can't even begin to explain how glad I am that I met her. She has been a huge inspiration to me and she totally gets what I'm going through.

I really wasn't much better when I left (The idea was that I would gain some leg strength) but my pain was quite a bit more managable.

They sent me home with the TEC still in me. Six days after I came home I landed in the emergency room with a mild spinal cord infection. They quickly removed the TEC, put me on spinal antibiotics and admitted me into the hospital. The next day, My fingers felt incredibly clumsy and I had a hard time gripping things. My arms were heavy and I couldn't lift them up very high. I felt off balance while I was sitting on the edge of my bed. Something was wrong. In two days I couldn't move my arms and any neck movement I had was just a slow tremor-ish movement. I asked them what was going on with me and they were quick to tell me that it was RSD progression (In less than 72 hours?), in my head (Because I was so disturbed by all of pain relief I was getting), faking (because this is so much fun!), or that I was going through morphine withdrawal. The story changed daily. In hindsight, I am pretty sure that they knew what was going on.
They kept telling my mom and I that there was nothing wrong with me. They decreased my antibiotic after about ten days. I started getting some slight movement in my neck later that day. Everytime they decreased my spinal antibiotic, I got a little bit better.

My mom asked my doctor if the medecine could be causing any of the problems. They got mad and stopped all testing. They sent me to another hospital immediatly. My doctor wouldn't step foot into my room again (Well, that's one way to get rid of them). I went to a rehab hospital for six weeks where I regained my upper body strength. The doctor who admitted me into the rehab hospital had no problem diagnosing what happened. They gave me the wrong drug. They didn't see what I was already taking (Baclofen) and that you aren't supposed to give the two drugs at the same time because they will screw up the spinal cord. A few more days on the antibiotic and I wouldn't be here.

When I came home, I stopped trying to get better. I was completely apathetic about life. Happy to be a alive, but not convinced there was anything out there to help me get better. I decided to make the most of life in a wheelchair and just force it into working. I didn't go back to physical therapy or any kind of outpatient patient therapy because I was so tired of medical stuff.

It didn't really help that nerve tests were showing incredibly severe nerve damage in both legs. Something that I always thought was irreversable. In a small way it was a bit of a relief "whew, I'm really not crazy." but than it's like "Oh, wait! This is really bad!". I was going to get a nerve biopsy but my doctor canceled it. I asked him why and he said "According to the EMG, there's nothing left to biopsy."
He gave me prescription B-12 and he said that it might help with the nerve damage.

I went back to art school but had to leave before the end of the first semester because I kept getting sick and couldn't keep up. At least once a week, I would be sick in bed with a fever. My weight peaked it's all time highest at 182 lbs.. My face turned perfectly round, pale and flushed. My eyes became puffy and swollen, my lips would turn a blue-red color when I was feeling sick.
I was hospitalized for asthma attacks and took inhaled steriods.
The inhaler messed with my vocal cords and I couldn't sing (Which is a big deal because I sing classically and was a voice major at my school). It was killing me. My fingers were perpetually swollen and playing the piano or painting was painful. I honestly thought I was going to die.

I realized that something needed to change. The first thing to change was my diet. Even though I was not eating meat (for ethical reasons) or gluten (for medical reasons), I was still eating a really horrible diet. I consumed a lot of cheese, milk, potato chips, caffiene, cheese puffs, coffee, shrimp, artificial sugar and processed foods.

I did some research to find out more about nutrition and why it is important. I made the decision to switch to a 100% raw vegan diet.
I don't eat dairy, meat (including any type of seafood), eggs, sugar, or any foods that have been heated above 105 degrees (Which means I don't eat anything that has been cooked).
I eat lots of avacados, tomatoes, dark green vegetables... any fruit or vegetable you can think of, I probably eat it. My mom and I like to make smoothies with bannanas, oranges and mangos.... Mmmm way better than the smoothies at the mall (and I used to really like those!). I also like to dehydrate vegetables, such as zucchini or mushrooms, to make "chips" or crackers.