Interview with Ryan

Today I chose to ask my friend Ryan a series of questions about what I taught him through my blog over the last 19 posts. Surprisingly, he did a very good job of reciting the information I gave in my posts. Thank you Ryan for sticking it out and reading all of my posts so far, I appreciate it!

Amplified Pain Syndrone

Here is an overview of pictures I have in my blog for a little recap.

Cooping Mechanisms

APS is hard to conqueror, but with the right tools you can take back control of your life!

I have several things that help me day to day with my APS. The most helpful one for me is my neck pillow, I use it whenever I am in pain to help keep my neck aligned.

This pillow is from Walmart for $9.99

I also like my bean bag neck pillow because I can warm it up or put it in the freezer!

Bed Buddy from Carex for $12.59

A great tool to help me out when I am stretching because I am sore is a resistance band!

This is from Walmart for $10

Another great tool is desensitization techniques that require tools such as the ones below. These little blocks allow patients to tap or rub a pained area to work on their desensitization process.

https://www.mvppt.com/services/hand-therapy/

Now you all know more about a few things that help cooping with the APS recovery process!

Flair Ups

APS isn't curable but you can work hard and keep your pain away, and once you start slacking your pain can come back.

I tend to have flair ups when I get busy with life and I start to slack off from working out, it always comes back to bit me in the butt. I can start to feel an outset of pain and that's when I know it's time to start working out more!

I have actually been dealing with being sick so all I want to do is sleep my days away, and by laying in bed a lot my body gets stiff and uncomfortable.

Warning: Naps are addicting, so limit yourself.

When Stress Arises

Stress plays a big role in APS because naturally when we start to stress out our bodies tend to tense up.

I am a perfectionist when it comes to every aspect in my life, so when things don't go my way I might freak out. I cause myself more stress than need be, but that makes me who I am today. 

I have learned to accept that I get stressed a lot, but I have had to learn how to keep it in control for my APS. What helps me the most is I like to keep an agenda with every assignment, it's due date, meetings, and anything major going on in my life. If I lost my agenda I would be completely lost. 

Even if you don't have APS, it's always a good idea to maintain your stress levels because it is actually unhealthy. Which is funny in a dry sense of humor, because I am in college and it seems like every student is constantly stressing out. 

We all have to just remember to take a deep breath every once in a while to keep us in check of our crazy lives.

Children's Mercy Hospital

Over the past two years I have gained knowledge concerning APS, and the one place that helped me the most was Children's Mercy Hospital in Kansas.

There are seven Children's Mercy Hospitals in Kansas City, KS and MO.

I frequently went to Children's Mercy, Adele Hall Campus on Gillham Rd in Kansas City, MO to visit Dr. Cara Hoffart and her amazing staff.

       

At Children's I received help from the Pain Management staff, I can remember that day like it was yesterday. I was thrilled to know what exactly was wrong with my body, I figured out quickly that my journey will be a long difficult road ahead.

One of the many papers we received that day I was diagnosed was the Treatment Guidelines for my family to understand what I was going through and how to treat it. 

The staff I encountered in the few visits I went to changed my life, and I am forever thankful for them helping me learn how to regain control of my life again.

Getting Back on Track

In my last blog post I mentioned that I have recently become sick, which has put a damper on my journey. Everyday has it's challenges, and these past three weeks have definitely been a struggle.

I have been having problems with my tonsils being the size of huge grapes that consume my throat. With that being said, I did not want to exercise. All I wanted to do was sleep, but I did manage to go to class and do my homework.

When I wasn't doing school stuff I was in bed, that caused a lot of stiffness in my body that I am still paying for.

Of course that sounds crazy, but if I stay in bed I only hurt myself by not moving around, so I am still paying for all of those naps. I did need it at the time, but now that I have back tracked I have to get things together and work extra hard to feel better.

I say work extra hard, meaning by accomplishing all of my school work, going to the gym, massaging my body parts that are in pain, and try to relax when I have time. But when does a college student have time, right?

The moral of this story, when life kicks you while you're down just get back up and keeping fighting through! It'll all be worth it in the end, I promise.

Managing Time is the Key

If you have APS, managing everyday of your life is crucial. I'm not saying everyone else's lives aren't busy, but we have our daily lives plus working in time to take care of ourselves. Everyday we have to go work out, try to reduce stress, and we also need to make time to massage our body if we're in pain.

As a freshman college student I have taken on a lot of responsibilities in the last few months and has put my APS out of wack. Trying to juggle going to class, homework, my health, my APS, and a social life is a lot to put on one plate. At first I didn't have too much to worry about, but then things got busy and I got sick..

Even when I am sick I have to manage my time and make sure I get everything done. Which this can be very stressful because when I'm sick all I want to do is sleep. When I sleep a lot, I tend to become extremely stiff and cranky!

It might sound easy to avoid a few of those problems by not getting sick, but let's face it no one can dodge that bullet.

Now that I am getting over the sickness I have to catch up on all of the homework I have put off. And I decided to spend all day Saturday doing homework in my bed. Bad idea. I thought my neck, back, and hips were stiff before.. I was wrong!

I did a bad job at managing my time this past week, and as you can read, I am paying for it now. This is a learning process for anyone with APS.

"It's Just in Your Head"

Everyday I struggle to get out of bed, I struggle to sit still in class, I struggle to stay on task, and like I have said before my chronic pain is NOT curable. Patients with APS or any chronic pain conditions have to deal with it everyday for the rest of their life because sadly it will probably never go away.

I have mentioned before that I have had chronic pain since I was eleven years old, and I am currently only eighteen. So being told that I will have to deal with this pain the rest of my life is impaling. Almost my whole lifespan of being in pain sounds terrible.

But what is even worse is most people don't even realize there is actually something wrong, APS is a condition that doesn't have physical appearances of pain. So when you see someone who looks completely normal that doesn't mean they aren't in pain. Chronic pain is very different, you can't see what is wrong, and most of the time if you ask someone how their pain is that day they won't truly tell you how they feel.

For instances, whenever someone would ask me how I felt that day; I was embarrassed because I didn't want to worry people or even annoy them with the sob story of always being in pain.

Chronic pain is real and a hard process to overcome for anyone of any age. Even though, I look healthy for the most part; you can't see the daily pain I go through. I ask all of my readers, that are not struggling with chronic pain, to try to understand that just because you don't see physical problems doesn't mean we are faking it.

Growing up, sometimes, children like to fake being sick to stay home from school. But when you are stuck in bed unable to move for days at a time.. There is something more going on than just a lazy child, and much more than the pain is "just in your head."

Please, try to understand that we have to push ourselves to do simple tasks that seem easy to a healthy person.

What is sleep?

Sleep can be difficult sometimes, this picture came from getreal4health.com

Sleep can be hard to come by some days because of being uncomfortable. I personally have a hard time sleeping because I can't sit/lay still for too long or else I get stiff. Even during the day I have to constantly be moving or I will have pain flairs.

When you sleep, laying still is normal but if that causes pain what is there to do? I have found that using a neck supporting pillow helps a lot. With my neck supported I wake up with less pain and I can function more in the morning.

Everyday I am constantly popping my fingers, neck, back, hips, ankles, you name it and I probably pop it! So sleeping with the neck pillow, for some odd reason, it helps me reduce pain.

As I have said before in a post, every person's APS and treatment is unique. Everyone affected has to find what works for them and just do it. No matter how crazy you might look sleeping with a neck pillow or massaging your skin in public, just do it.

Whatever works for you is what you need to do to control your pain so you can sleep.

New Locations of Pain?

If you have read all of my previous posts, most likely you've gathered that APS is a crazy condition. This condition has no limits, it does what it wants when it wants.

Reading the title to this post might have you a bit confused, well here is your explanation: APS can advance to new places in the body. Whoa, weird! Yes, there can still be pain in the original location but new painful spots can surface. 

So the fall of 2014 I started having gallbladder attacks, which one wouldn't think is related to my APS. I went through weeks of attacks, rarely eating, and numerous doctor visits. I had an ultrasound just to check out my gallbladder, then we moved onto a Hepatobiliary (HIDA) Scan. 

This scan is primary to test the functioning of your gallbladder, the nurse injects radioactive bile into the arm and you are put in a special nuclear medicine scanner (gamma camera) that traces the bile through your body.

Doctors look at how well the bile went through your liver, gallbladder, and small intestines to determine if your gallbladder needs to be taken out. Just the test alone lasts one to one and a half hours, but the whole appointment is two to two and a half hours.

Luckily, I went through almost a month of hell before they realized my gallbladder works decently. So I didn't have to have surgery!

After that, my primary care physician knew to call Children's Mercy Hospital in Kansas City to ask if all of my symptoms where APS related.  Lo and behold it was JUST my APS and I was so happy because I knew how to fix that. 

As demented as it sounds, APS can progress to new locations in the body. 

Needing a Good Laugh...

APS is unique to each individual patient, and doctors have to figure out what to do to fix the problems. The cat picture above probably looks out of place, but I went through muscle spasms ALL the time before we actually knew what was wrong with me. Of course medicine like muscle relaxers didn't help at all, because medications do NOT work for APS symptoms. 

I recently came across this blog Chronic Illness Cat and laughed so much! I wish I would have found this blog when I was at my worst and needed a good laugh. 

Going through this blog, as someone with a chronic illness, makes me laugh because I can actually relate. Even if you do have a chronic illness, I highly suggest checking out this Tumblr blog to get a chuckle if you're having a bad day.

Support Throughout the Journey

Photo Taken by: Bayli Milleson

This is my momma, Cathy, she has supported me through my best and worst days. As y'all have read, I was somewhat of a problem child growing up with my APS kicking my butt.

APS is a difficult thing to go through, especially as a child/teen. Not only is your life becoming busier, but also being sick (with who know what) all the time on top of that and it's a lot harder if you don't have someone that's there for you when you're down.

I was not a pleasant teenager when I was heavily medicated and still in pain. So if you have someone who will STILL put up with you during all of that, you have yourself a wonderful person.

My mom was the one person that showed her love for me in many ways. Anything from the little things such as getting be a route 44 green apple slush from sonic when I had a migraine to keep me hydrated. Or sleeping on a rock hard couch for four nights/five days in a hospital with me. These were the toughest times in both of our lives.

Rarely we had a good laugh when I was so loopy from a medication that I would speak Spanish to her, or see a monkey in a wood door.. I can't imagine what it was like taking care of me because I'm not always the nicest when I'm in pain.

But once we knew I had APS, every morning I didn't feel good she would say "Bayli, you have to get up because you know if you don't you'll only get worse." Just by her telling me this I knew I couldn't give up, and I knew I couldn't let APS conquer me and control MY life.

Having a support system when you have APS is very crucial, on your lowest days you will need someone to pick you up. It might sound silly, but having someone there for you really helps. Whether it be they make you stick to your plan to work out, or just listen to you vent about how crappy you're feeling that day.

My momma is my support system and the one that inspired me to do everything I could to get better.

Massage Therapy/Desensitization

Massage Therapy, as most of you probably know, is getting massages wherever you are currently in pain. But desensitization is rubbing, patting, tapping, etc. area(s) that are painful to retrain your nerves.

When I say retrain your nerves, I mean doing anything that causes you pain until it doesn't hurt anymore. Crazy? Yes, but by desensitizing yourself it tells your nerves that you shouldn't be in pain.

So there are all types of massages, the most effective way for me it just to get comfort out of it. I had a great masseuse, but then she had to move away. I ended up trying out a new one, but he tried to get EVERY single knot out in my neck/back. I was in tears and in worse pain than I was when I walked in the door.

Once you know which way helps you in the long run make sure to tell your masseuse, trust me it'll save you from a lot of pain. And that doesn't just go for people struggling with APS, I suggest talking to your masseuse so he/she knows what works for you.

Now, desensitization needs to be done at least one hour a day. The best thing to do is break it up into six 10 minute sessions. It might not be possible to always break it up into smaller times, but you have try your best.

Since I have pain in my head, neck, back, and hips I couldn't always reach the places I was in pain. I had my mom, dad, and friends help me out whenever they could because I couldn't do it all by myself.

But I was constantly rubbing the back of my head/neck in this position:

Credit to http://images.wisegeek.com/a-boy-covering-his-ears-and-neck.jpg

Although, when my APS resurfaces I go workout, reduce my stress if possible, and massage the heck out of the places I'm in pain.

APS is a crazy condition, but I am glad I finally know how to treat it and now so do you!

Impacts of Mental Health

This image came from: http://healthcenter.ucsc.edu/shop/general-health/mental-health.html

Yes I said it, mental health does impact amplified pain syndrome!

It sounds crazy that physical pain can be effected by your mental health, but I have learned that my anxiety does play a role in my APS. Anxiety affects 40 million adults 18 and older in the U.S.. (Source:National Institute of Mental Health)

I have always had a worrisome mind, but I wasn't officially diagnosed with anxiety until the summer before my junior year.

I knew I needed to get help when I spent hours worrying about all of the homework I had from missing school. Some people that don't have APS might think "Well go to school and do the work so you don't have homework." But it wasn't that easy.

I struggled to get out of bed most days because I was in so much pain. So when I finally got my homework for the week I stressed out. I had no clue how to do my geometry homework or any of it to be honest. I can distinctively remember many nights I would be sitting at the table in tears from frustration, and I had no clue how I was going to do all of my homework.

Another thing I struggled with, I am the complete opposite of a procrastinator. So, I always wanted to get ALL of the week's homework done in one night and that was impossible of course.

Being in pain all the time amplified my anxiety too, since my APS has taken a turn for the worst, I have had several panic attacks. All of my fears have been amplified to the max and it became unbearable. So I went to therapy and was started on medication.

Not everyone needs medication but I wasn't able to manage my anxiety without it. But on the bright side, you don't have to be on anxiety medication your whole life! It's great to know that once you've learned how your mind works you can learn techniques to calm yourself and not have as many, if not any, panic attacks.

Essentially, mental health does impact APS and it is a necessity to manage it if you want to feel better all around.

Physical Therapy Side of APS

In a previous post I mentioned how to treat APS. But for a refresher you have to do physical therapy, manage anxiety, and massage therapy/desensitization.

In Children's Mercy Hospital all across America doctors are helping kids become pain free! Here is a short video of a severe case of APS.

Video from https://www.youtube.com/watch?v=Pr-gDxV-GZI

You can also check out stopchildhoodpain.org for more information about APS.

Now that is Matt's story, and every child's pain is unique; and so is their physical therapy treatment. For example I have pain in my head, neck, back, and hips. There were days I struggled to get out of bed, so I didn't. 

My therapy consists of constantly moving because if I sit still too long my body locks up on me. Exercise. Exercise. Exercise. I can't say it enough, if it hurts you're doing the right thing! (I know I sound completely insane! But it works for me and it worked for Matt!) 

I know how easy it would be to just give up and let the pain consume your life because I let APS control me at one time. Once I knew about APS and what I had to do to get better I never gave up. Sure, there were many days that I just wanted to stay in my bed because I was in so much pain. But I knew the only way I'd get better is to keep moving and the pain will go away.

I have said before APS doesn't go away completely, because the only way to be pain free is to keep exercising so you don't get stiff. I know it can be hard at times when life gets busy, but if I start to have pain I know what I have to do. And I hope anyone else who is struggling with APS has the strength to do it too.

That is part one of three to treat APS! Watch for my next two posts to learn how managing anxiety and massage therapy/desensitization are crucial to treating APS.

My Journey

If you have read all of my posts, most likely you remember I was diagnosed with Amplified Pain Syndrome my junior year of high school. Now that you have some background knowledge I can tell you all about my journey that got me here today!

When I was a child I was always sick, around the age of eleven I had numerous sinus infections that were causing bad headaches. Until I was 14 years old my doctor, Dr. Dove, thought I just had really bad sinus inflections. But then she made the assumption that I was getting bad migraines and it was not my sinuses.

I started having horrible migraines a few times a month, and when they hit me I was out for at least a day. As time passed I began having migraines more often than not. When I had a migraine I would stay in a cool dark room and not come out until it was gone.

You can imagine how bad that would be since all I ever did was sleep, so when I had a migraine I always ended up getting dehydrated.

By my sophomore year of high school I made it to school two out of the five days IF I was lucky. I was in and out of the hospital being pumped full of fluids and a new concoction that doctors just knew would be the trick to get me better.

I was scheduled to see my migraine specialist, Dr. Katz, once a month to catch up on how I was doing. Sadly I saw him or my mom spoke to him more than once a month because he would send me to the ER when I couldn't knock out a migraine.

Dr. Katz had me on a gallon size baggy FULL of medicines to prevent, get rid of, and reduce pain. For what felt like forever, I was on a muscle relaxer twice a day. That was the only medicine that really screwed me up and everyone hated it. The muscle relaxer made me very hateful because I was in pain, always tired, and I was sick of being sick.

That all happened in the fall of my sophomore year, then January rolled around and right before I was supposed to return to school from Christmas break a migraine knocked me on my butt. Dr. Katz had my mom bring me to Topeka's Stormont-Vale Hospital so he could be there to treat me.

My doctor said to pack clothes for at least three days, because I wasn't leaving that hospital until I was better. I was treated with D.H.E. 45 (dihydroergotamine mesylate) once every four hours. I was there for five days... I came in with a migraine of ten on the scale of one to ten, ten being the worst. I left the hospital at a four, even though I wasn't completely better they sent me home anyway. I had to be taken off of it because it was getting extremely dangerous for me to have that much D.H.E. 45 in my system.

I have to say that was my lowest point in my life and I was so scared because my body started out with just pain in my head but ventured down to my neck, back, and hips. I had several MRIs, CAT scans, and X-rays done to try to figure out what was causing a 16 year old so much pain.

Eventually, my primary care physician talked to a friend of her's that works in Pain Management at Children's Mercy and I was referred and scheduled to meet with Dr. Hoffart to see if I had APS.

The day I met with Dr. Hoffart and her team, my life changed forever. Although I am not "cured" from APS because you are never completely cured, I am in a better place than I was in high school. I am so thankful for where I am today, I couldn't have done it without my mom.

Made by Bayli Milleson on http://www.abcya.com/word_clouds.htm

So that's my crazy life! Over the course of these next four months you'll learn all about APS and the daily struggles that someone with APS goes through.

How to Treat APS

In a previous post I attached a picture of the front and back side of a body to mark "X"s where the patient is in pain. Once the doctor knows where their patient is in pain they start the recovery process.

If you are diagnosed with APS, pain medicines will not work because your nerves are playing tricks on your mind and you can't fix pain that shouldn't be there.

Now, when a patient is recovering from APS their process is unique to them. But with APS there are three main rehabilitation key points you have to go through to "retrain" the nerves in the body so they don't tell you you're in pain when you shouldn't be.

The main three treatments are physical therapy, managing anxiety, and massage therapy/desensitization. Every time you have an appointment at Children's Mercy Hospital in Kansas City, KS/MO (where I went for help) you meet with several people to address each rehabilitation training.

So, you can go about recovery many different ways depending on the person and their pain.

Breaking it down, physical therapy you do everything that hurts you until it doesn't hurt anymore, this sounds completely insane but it actually works. 

Managing anxiety probably sounds simple to do, but when someone misses school or work it causes a lot of stress on them and it doesn't help their APS. Meeting with a counselor or talking to a close friend to relieve and learn ways to reduce stress is a part of recovering from APS.

Last, but not least massage therapy/desensitization is to reduce pain. Desensitization is the elimination of pain to the touch wherever pain is located. You can rub, pat, brush, or pretty much use anyway that helps desensitize your pained area(s).

At Children's Mercy Hospital they actually have a three to four week Rehabilitation for Amplified Pain Syndrome (RAPS) program. Depending on the patient, the amount of time is not set in stone and it's for them to come to work on themselves if they fail at home to gain progress. When I was told this in my first appointment I was terrified because that meant I would miss three to four weeks of school. On the bright side Children's Mercy works with schools and gets the homework so the child can still get their education while in the program. 

Even though I never had to go into the RAPS program, I still had to work just as hard to get to where I am today. So stick around to learn more about APS and my journey! 

What is Amplifed Pain Syndrome?

Very few people are knowledgeable about Amplified Pain Syndrome because it's not a common disorder.

Amplified Pain Syndrome (APS) is a condition that someone's pain is increased because of abnormal firing of nerves that cause them to feel pain when they shouldn't. Pain can be in one location, multiple locations, or their whole body. Some causes of APS is stress, illness, or prior injury.

A chart to demoastrate APS: http://www.chop.edu/conditions-diseases/amplified-musculoskeletal-pain-syndrome/about

This condition is more common in children, and it's surprising that children can handle excruciating pain for weeks, months, or even years before that get an official diagnoses. I went through seven years of extreme pain, many hospital stays, and an assortment of medication trials before a doctor knew what was wrong with me.

The first day of my junior year I missed school to take a trip up to Children's Mercy in hopes of finding out what was wrong with me. When my doctor, Cara Hoffart in the Pain Management Department, told me I have APS it brought my mom and I to tears. Although that might sound insane, but we cried happy tears. Once you finally know what's wrong it's such a relief, I can honestly say that day changed my life for the good.

Before you can officially be diagnosed with APS you have to rule out all of the other possibilities to make sure you're not misdiagnosed. For years all of the specialists I went to all told me I had migraines, allergies, and did countless tests on me.

So when I went to my very first appointment with Dr. Hoffart she took a very different approach than any other doctor I have met. I was handed this picture below to mark "X"s where I have pain:

The body chart: http://www.clipartbest.com/cliparts/dT6/edz/dT6edzpT9.jpeg

Sadly enough my picture of a body had "X"s all over it. Most of the pain I had was in my head, neck, back, and hips, and I did have time when my whole body was in pain.

For extra information check out Center for Amplified Musculoskeletal Pain Syndrome.

Now you that know what APS is, you will have a better understanding of my journey to conquer it.