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!