Let's start with... My story.
First of all, I was inspired by a dear friend to start creating a blog. I like the whole idea of typing out your thoughts and stories and hoping someone (somewhere) may be inspired by it. Pretty cool, so props to you Meg :)
Anywho, let's begin. I'll start by telling you that one of the purposes of my blog is to write about my pain disorder called Reflex Neurovascular Dystrophy, and also to write about my random epiphanies I discover along the way, but here's a little about RND...
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.
In shorter terms, it is amplified pain. It is rated 45/50 on the McGill Pain Index.
And it all started December 3rd, 2010- Freshman year
On Friday, December 3rd, 2010, I got my wisdom teeth removed. Went in at 8:00 a.m feeling pretty good about the whole situation. Everyone gets their wisdom teeth out, why should it be any different for me? (WRONG) I came out of the oral surgery room an hour later. The nurse told me the anesthesia should wear off in a couple hours. I had the worst POUNDING headache you could ever have and my neck hurt terribly. "This is normal right?" I asked. The nurse told me that the pain I was experiencing should go away in a few days, if it isn't back to normal after a week or two, come back and see the oral surgeon again. A few days passed and my pain was still around and the level of pain did not change. I missed that monday of school because it was just unbearable. I literally could not function. My mom and I set up an appointment to the oral surgeon the following week. He prescribed me some pain medications, and if that did not work in a month, come back. Aaaand of course, a month went by and the medications weren't working. In the meantime, I could not pay attention at all in school because of the awful amount of pain I was in. I couldn't pick my head up to copy down my notes, I couldn't read anything because it just hurt too much to concentrate, and it progressively got harder to get through the days. So, I went back to the oral surgeon. He told me that it could possibly be TMJ (Temporomandibular Joint Disorder) so I should go on a soft food diet for a little and come back if it doesn't work. Basically after not eating anything in that period of time, I went back to the oral surgeon and he got so offended. He was so red in the face and said with attitude, "this is not my fault at all, nothing from my surgery caused this. This is a neurological problem, go see a neurologist." Okay jerk, will do.
January-March 2011. My first appointment with the head neurologist at the Children's Hospital of Philadelphia, Dr. Younkin. Man, what a pleasure it was to work with him. (note my saracasm). Every appointment was the exact same thing, took my vitals, rated my pain, typed on his computer. Whenever I talked, explained something, or expressed my concern, he wouldn't even look at me. He just stared at his computer screen typing. Like uh HELLO SIR, I am right over here, please show some common courtesy and pretend like you care, please. Whenever I gave him a number on the pain scale, I always gave a 9/10. I preferred to save my 10's just in case. Anywho, back to my story. I explained to him what my symptoms were, when they started, etc. After a good 15 minutes of staring at his computer screen, he finally talked to me. He said,"Well, I don't exactly know what's wrong with you, but I'll just treat the symptoms." (Isn't the whole point of a doctor is to find WHAT is wrong with you? Like go ahead waste my time on stuff that don't work, I mean I'm fine I guess, I like waiting in pain..) He gave me a timeline. "First start off with this medication, if it doesn't work then go we go to this next medication, then the next one. Once we get to the bottom of our list, you will be admitted at CHOP for IV forms." I thought, okay since there's like 12 billion different types of medications on our list, one is bound to work.
HA, no. We even got x-rays, MRI's, bloodwork, went to HUP to rule out any oral surgery mistakes, everything was clear. We reached the bottom of our list, so on March 27th, 2011 (I believe), I was admitted at 9 South wing, room 1 at CHOP for several days.
I actually felt like a prisoner.
My mother, father, and I drove on over to CHOP to catch an appointment at Opthamology to rule out pain related to the eyes, and then wait for my room to be ready. Went to the appointment at 11:00 (which of course came out negative for any findings), and then waited 8 freaking hours for our room. Sitting in a random waiting room + a TON of pain = one unhappy Meg. My dad left on the train to the airport to catch his flight to work, so my mom stayed with me for those few days in my room.
They seemed to last an eternity. Around every 4 hours, nurses always came in to check my vitals and all that fun stuff, including taking vitals at 12:00 a.m, and 4:00 a.m.. "Sweetie, I'm check going to check your vitals so I am going to lift up your arm for a second." Tired me, " Uhh mep?" I'm pretty sure I accidentally hit her in the face, gosh I was so tired.
The annoying part was that I could barely move around with my IV cart, I was seriously confined to that thing. I used to walk around the hallways with my mom dragging my little cart. best friends forever.
One hilarious moment came out of that whole trip: I was laying in bed, probably watching NCIS, and my nose just started hardcore bleeding. It was right before the residents would come in and watch me do tests run by the neurologist, so I really had to get that under control. I was sitting on the floor in the bathroom holding my nose (still attached to my IV cart). It was a funny sight. My nurse came in and was cracking up. She was like "girl you are such a mess." She sat on the tub while I was on the floor. She was still laughing and was like, "Wait, imagine if you had your period right now, that would be absolutely awful." I stopped laughing and I was like, "Not even kidding, but I actually do." We were laughing so hard that we actually cried. She was like, "Your life is seriously a joke." Hahah girl I know.
Long story short, by the end of the couple days, the doctors told me I could switch the medication if it wasn't working, but that would mean staying for another week and the medication would make me extremely nauseous. I felt stable because I just laid in bed for those couple of days, so I declined and was discharged that day. My mom was so excited because she thought I was feeling better. We were 10 minutes out on our drive back home, when I noticed that the good feeling didn't last. "Mom, it's back to an 8," I said. 10 minutes, it only took 10 minutes to get bad again.
April 2011- June 2011
I ended up switching neurologists because I didn't think Dr. Younkin was the guy for me. My new neurologist was Dr. Sapin. (Thank god she just reread my file so I wouldn't have to explain my story all over again for the 100th time) She was like, "I am always going to be honest with you. First of all, I'm really not certain what you have because your headaches and neck pain match MANY different diagnoses, but I have a feeling it's neuropathic pain (which is chronic pain caused by damage to the nervous system). She gave me more medications related to treating neuropathic pain.
At this point of time, spring track started. I wasn't really sure how my body would react to this hard amount of exercise, because field hockey ended 2 months before my pain started, and I didn't play any sports until track season. Even though I knew I was going to be in some degree of pain, I was still so excited to get back onto the track because I loved running so much. We started off with warm-ups, a couple laps around the hallway. First lap, okay I can handle this. My head feels like it's blowing up like a balloon and my neck is getting tense, but let's see how this goes. Second lap: Is this warm up over yet???
We split off into sprinters and distance runners, so I went outside on the real track with the sprinters. The coach made us run ladders; First, you run a 100 meter dash, then a 200 meter, then a 250 meter, then a 300 m, then a 400 meter, and then back down the ladder. Started off with the 100 m. Sprinted as hard as I could, but I noticed that my pain was going down my back. It literally felt like someone had shot me. My head and neck were throbbing so bad, I truly could not handle it. I was fighting back tears because I didn't want the coach to see me cry since it was only the first day of track. I went through the workout with such difficulty that I just kept dropping back in the group.
The practice finally ended, but my pain was still awful. I got home, went to my room, and cried for the rest of the night. This was the first day that I noticed my pain had spread.
I started getting antsy because field hockey spring training was coming up. During the fall, I started on the JV team, which was good because I was only a freshman. That was probably the funnest season ever. We just joked around all the time and played games and everyone got along. We were all best friends so I was really looking forward to playing again. I love field hockey to pieces, just everything about it. I've been playing since the 6th grade.
Anyways, I'll describe the first day of practice. We practiced over in an indoor turf sportsplex because it was a little too cold to play outside. I walk onto the field and I was greeted by the varsity head coach and the rest of the coaches and of course my teammates. (The varsity head coach's name was Coach Wyatt, and my JV head coach's name is Coach Rauchut, best coaches in the world!!) I was actually happening to be wearing a t-shirt that had the name of one of our rival schools. Coach Wyatt joked around and told me to burn that thing. The practices were just once a week from April until the beginning of June. We just ran drills and scrimmaged. My pain was still really bad in my head, neck and back, but I didn't want to tell them about it at all, I thought it would make me seem weak. A couple of my friends on the team had known I was in pain, but not everyone. One of my friends/captain at the time, Allie, noticed I was struggling a little so she pulled me aside and talked to me. She was like, "Meg, you are crazy not to tell them. This is a legitimate issue and I will kill you if you don't tell them in the next 5 minutes." Then, right after that conversation she yelled to the coaches,"GUYS MEG HAS SOMETHING TO TALK TO YOU ABOUT!" Hahah okay Al, thanks for that.
Nervously, I walked over to the coaches. Wyatt was like, "So Meg, what's troubling you?"
It took me a good couple minutes to stutter out the words. I didn't exactly know what to tell them because I, nor my doctors, knew what was wrong with me. But anyways, I told them that I was in extreme amount of pain in my head, neck, and back. It gets even worse when I play sports or exercise, but I was being followed by a neurologist at CHOP so I am allowed to play. Wyatt said to me, "Meg stop, don't even worry about this. Your pain condition doesn't affect anything or our decisions about which team you will make. Trust me, do not worry." After that I felt pretty good about playing and I really trusted my coaches. I am so very lucky to have them.
But, one practice went really bad...
I was driving over to the sportsplex with my mom, when I felt that my heart rate was extremely fast. (Note: When I was younger, I had a heart arrhythmia, so an irregular heartbeat) It was kind of scary actually. Also, I had noticed that the time my pain had started, I had nausea almost everyday and got dizzy a lot. Sometimes, I would be really close to passing out. One time I actually blacked out and fell into a laundry basket. Haha anyways, back to field hockey practice. (this all ties together, be patient)
My mom measured my heart beat and it was about or over 120 beats per minute. This wasn't good at all. If I played in practice, something bad could have really happened. I walked onto the field with my mom, and my coaches were like "uh oh". She told them that my heart beat was really high and that I couldn't practice. My coaches agreed with her and I went back home. My mom called the neurologist and she said to go to the emergency room.
After a couple hours at the emergency room and some IV's, the doctors said it was just a "fluke" and sent me home that night.
I was really upset that night because of what happened and just everything with my pain, so I texted Coach Wyatt. I said something along the lines of, I'm so sorry for all of this, it is kind of high maintenance and I don't mean it to be. I'm working really hard with my doctors and I will be better for fall hockey. She texted literally a novel back. She said the most reassuring thing in the world to me: "Meg, do not be sorry. Do not ever apologize for something you cannot control. This doesn't affect anything. I am planning on starting you on varsity this season as a sophomore, I know you will do great things. Even through all this pain stuff, you have an incredible amount of talent. We have so much faith in you, Meg, we really do. We will never give up on you. You can do this." I read that text and I started to cry. Finally, someone actually understood what was going on. It meant the world to me to have them reassure me that everything would be okay, and especially that my pain wasn't ruining my dreams.
School finally ended too. I almost got my first C ever in geometry, but somehow, I got an 80.10% in the class. Man, was I close. My teachers throughout the year were extremely supportive with my pain. If I didn't have those specific teachers, I probably wouldn't have done as well. I think I had all A's and B's for finals. I really don't know how though, all of the medications I was on either A) messed up my concentration, B) made me very sick C) made me drowsy. And the main thing of course, doing well with my pain. I was so proud of myself.
I had one teacher specifically that always had my back. He was my english teacher, Mr. Day, and I really have to give him a shout out, even though he probably won't ever read this. I had a really hard time reading because my head pain made it almost impossible to concentrate, and even comprehending information. He used to sit down with me and physically read to me and summarize the passages. If I had an issue, he'd let me sit outside during class, then after school he would catch me up on my work. Also, we had countless heart to hearts and he always listened to me and gave feedback. It meant a great deal to me that a teacher took time out of his day to care about a student like that. That is probably my prime example of what every teacher should be.
July 2011
My neurologist was a little concerned about the whole situation so she suggested I go see the Diagnostic Center at CHOP for a second opinion. You basically go there when no one knows what the hell is wrong with you. I went in and saw Dr. Magnusson. I told him my symptoms and what went on this past year. He told me he knew exactly what was wrong with me. He told me that I had this disorder called Dysautonomia (dysfunction of the autonomic nervous system). That disorder is what was causing my nausea, dizziness, fatigue, and maybe some of my head pain. He said I also had tension headaches probably, or something related to the muscles, so he wrote me a prescription to start going to physical therapy. I started going right after that.
August 2011- October 2011
I was already in a month of physical therapy. They just figured it was pain from knots in my neck and shoulders, so that's what they worked on. I got massages every time I went and did all my exercises. It was a lot of core stuff, arms and all that. You would think, hey massages are great... ha ha no. torture. The whole time, I kept telling them that field hockey preseason is coming up, I NEED to be better by then. "Okay Meg, now do your exercises."
Eventually, preseason came!!! woo. Luckily for me, that year we had 3 practices a day in that crazy heat. Again, torture. Coach Wyatt and Coach Rauchut knew exactly what was going to happen so they really worked with me. It was really exciting during tryouts because Wyatt kept me playing with the upperclassmen. It felt like such an honor. I played as much as I could in pain, and if I didn't do well, then I didn't dwell on it. You see, I was more focused on seeing if I could actually play field hockey in general that year. I really had to focus on my health. I wasn't too concerned on what team I would be placed on. I figured if it was mean't to be, it would be. Preseason was just awful, everything just throbbed so bad. It was one of my worse RND experiences. To make it all worse, Coach Wyatt made an announcement that she had to stop coaching because of her job. I cried so hard. But, I knew it was going to be okay because Coach Rauchut is just as amazing.
During the second week, we had cuts. The coaches called you up individually to meet and talk about your strengths and weaknesses. My name was one of the last names called up. I was freaking out by this time. I sat down with my coaches and they just stared at me for a good couple minutes. Coach Rauchut only asked me one question, "Meg, what team do you think you deserve to be on?" I was so confused and nervous at the same time. I didn't want to sound cocky or say the wrong thing. I was like, "Uhh in my opinion, I think I can be on varsity. I know I really haven't done well during preseason, but that isn't how I normally play at all. You guys know me. I will just work so much harder I swear and have it all figured out." Wyatt smiled at me, and Rauchut just said, "Okay, it's settled then, you're on varsity." I was like is this real life??? Like what. This was one of the happiest moments of my life. All my hard work paid off, for one of the things that I love the most.
Wyatt came up to me just before I was about to leave. She told me, "Meg, you're impressing them with only like 60% of what you got. I am so proud of you. Just wait till you are completely pain free. Gosh kid you have such a future ahead of you."
(The main reason I have shared this story is because field hockey has been one of the greatest accomplishments of my life, but one of the biggest stressors of my life, too. I have gone to hell and back with this sport. I love it so entirely much and it has been a big motivation for me pushing through my pain. I am eternally grateful for my wonderful coaches and teammates. I couldn't have done any of this without them)
At the end of October, I finally reached my breaking point. It was actually extremely traumatizing for me and this was when I knew that I wasn't okay.
October 30th, Playoffs. My high school field hockey team placed second in our conference, so we qualified for playoffs. This game was such a huge deal. We were 13th seed playing a 14th seed team so we knew it was going to be a tough game. We played it at home under the lights on the turf. Wyatt came to watch this game. Whistle blown, the game starts. 10 minutes into the game, my pain was going out of control. My head was throbbing uncontrollably and I started feeling it in my neck. Finally reached halftime. I started bawling my eyes out under my mask. I couldn't take it anymore. My assistant coach was holding my head up, "Meg, pull yourself together. Pick your head up, don't let anyone see you cry. You need to finish this game. You can do it." She was stretching out my shoulders while my best friend was literally holding my head up because I couldn't do it myself. I could not stop crying. I get back in the game and the other team had 5 corners in a row against us. I couldn't breathe, my body was getting so heavy that I could barely hold myself up. I was holding on to the goal posts until the ball was hit out and the corner started. My back to my head was in the worst pain ever. Coach Rauchut finally pulled me out of the game. I collapsed on the bench and was shaking uncontrollably. The assistant coach Brockman and the athletic trainer were trying to comfort me and give me ice but I wouldn't let them touch me. My best friend's dad saw me bawling my eyes out so he came over and just held me. I told him I couldn't handle this. All he said was,"I know baby, I know." My mom and Wyatt finally saw me on the bench. They had no idea what to do. Wyatt asked my mom, "Are you sure she doesn't have RSD? It really seems so much like it." (Of course, Wyatt knew I had it even before my doctors knew, crazy right?) My mom said she barely even knew what RSD was.
November 2011- February 2012
I still continued with regular physical therapy. My physical therapists kept giving me the heads up that they were going to discharge me. I mean I don't blame em, I've been going there for months with no progress. Every single visit: "What's your pain level today?" " I don't know, probably reached a 9, mostly a 7, went to an 8 too, possibly a 10." "Uh okay, Meg, just do the eliptical."
They were running out of options. It's just honestly one of the worst feelings in the world is someone giving up on you. I should've been used to that feeling by that point, all of my doctors gave up on me.
In January, my neurologist ran out of options too. "Again, I am being honest with you, we are running out of pain medications to give you. You took so many different kinds already. You can either A) Increase your dosage on a medication you already took or B) Start taking Neurotin," said Dr. Sapin.
I told her I was done with medications. The side affects were too much and nothing was working anyways. She ended up referring me to the Pain Management Clinic at CHOP and told me to call her whenever I needed her. (So, meaning, she dropped me too)
A couple weeks later I had an appointment at the Pain Management Clinic. I told them my story, blah blah blah. He consults with the psychologist and the doctor says, "Megan, we are for certain that you have Amplified Musculoskeletal Pain Syndrome, AKA Reflex Neurovascular Dystrophy. It is a chronic pain disorder caused by trauma, stress, hormones, etc.."
Me and my mom were like THANK GOD THEY FINALLY KNOW WHAT IT IS. After a year and a half of going undiagnosed. This felt like we hit the lottery!!!
But the way he described it made me and my mom feel like he was saying I was crazy. He emphasized the stress part of the RND. I felt a little offended, but I had a counselor explain it in such a better way.
But anyways, the doctor told me to get an appointment with the physical therapists here at CHOP to get a home exercise program, if it doesn't work, get an appointment with the RND Clinic to be set up to go into their physical therapy program. Also he said to see a counselor.
February 6th, I had an evaluation with one of the main physical therapists, Kathy. She was pretty awesome. She checked my strength, cardio, core, etc. and made a home exercise program designed for me. She told me if I didn't feel better in 2 months, get an appointment with Dr.Sherry or Dr. Bernal and they will decide what to do. Back at home, the regular physical therapists dropped me because they figured I was in good hands now (which I definitely am).
March 2012- June 2012
I kept trying to do the exercises on my own since I was discharged from physical therapy. The home exercise program consisted of 30-45 minutes of cardio, core, and stuff that would strengthen your neck and back (those would also like go to the head too). There was also a static exercise, where you had to do an exercise for a minute (for example, jumping jacks), and then just stand straight up for a minute. There was like 10 total exercises or something that went along with it.
I did all my exercises in my basement. I bought an exercise ball and some weights too to go along with it. I also had a treadmill to do all my cardio.
I tried so hard to do it on my own. It was just so bad that I couldn't even run 5 minutes on the treadmill without this awful, throbbing, stabbing pain.
It was finally time to call the amplified pain clinic, where I would finally be getting help.
At the end of June, I finally had an appointment with Dr. Bernal and his nurse practitioner Julie.
I met with Julie half the time and then Dr. Bernal met with us during the last half. I was so nervous because I didn't know what they were going to say. I gave her a summary, and she wrote it all down. Julie is so awesome and genuine, she actually looked at me while I talked and asked questions. It felt good to meet a doctor who actually truly cared about my situation.
After she wrote down everything, she told me that I do have RND. Then she asked me if I understood it. I really didn't so, Julie explained it for me. I can't remember how she explained it, but after she did everything just clicked.
I had seen videos about people in the program and people with RND but I was a little confused. I thought, how could I have RND? I am so high functioning with the pain, and some of these other kids/teens are in wheelchairs..
Julie explained to me me that there are so many patients like me. The pain is still bad for everyone, it's just that for kids like me, we still kept active and using whatever body part it affected, so it didn't become immobile. That made perfect sense too.
Finally, Dr. Bernal came in :)
He was so at ease and he just seemed so happy. Like hey what's up, as if nothing was wrong with me. I felt really comfortable. With all my other doctors, they treated me like I didn't have feelings basically, like no substance just all pain and that's all they cared about. Which I mean, is normal I guess but I didn't like that. With Bernal it was completely different. I trust him completely and it is the best feeling in the world knowing that he actually cares about me. He isn't just a doctor, he's like my hero.
Sorry, getting a little sentimental. Anyways, he checked out what was hurting, how sensitive I was, etc.
He said I should definitely go into the program. So, they put me on the waiting list.
Weeks leading up to the program, I was freaking out. One of my biggest concerns was making friends (stupid, right?). It obviously wasn't my biggest concern but I was scared about that!! I didn't like going into a situation knowing that I would be in the worst pain of my life. I didn't know how I was going to handle that, and especially with all new people. Also, I cried all the time thinking about how I was missing all of my junior year field hockey preseason. I was captain of the varsity team for my junior year (which was this past fall) and I thought it would look terrible if I missed preseason, or I would be cut from the team. Luckily, my coaches were very cool about it. I mean, they knew I would be in much better shape from the program and obviously getting the help I needed.
I was in the program from August 6th- August 31st. But, that story is for a different time.
It's weird thinking that I did all of that the past 2 years. I randomly think about it. Some memories make me laugh, and some make me incredibly mad. But in a way, I feel blessed knowing that I could've gone through worse, and blessed knowing that I am being taken care of now.
