My Shoulder is What?

I sleep with a teddy bear.  I know it sounds weird, and I know I'm way too old for stuffed animals, but you see my shoulder is frozen.  And when I say frozen, I actually do mean frozen.  Sleeping on my stomach is not comfortable, and sleeping on my right side is not possible. I know better than to even try.  I can sleep on my left side okay as long I stuff a pillow under my armpit for support, but I spend most nights sleeping on my back.  That's how the giant teddy bear found it's way from the basket in the spare room to my bed.  I can't rest my hand on my belly when I lay down.  It's really  bizarre how it just sort of hangs there hovering above my stomach like a limp rag.  Teddy gives me another option besides leaving it stiffly at my side.  I wrap my arms around him, and generally contort him into whatever shape I need to get comfortable.


So the short story is that the rotator cuff tear that happened in 2016 morphed into something called Adhesive Capsulitis, also known as Frozen Shoulder, and there is nothing the doctors can do for me at this time.  The long story is this.

HOW IT HAPPENED

I really don't know how it happened.  I worked out pretty hard core in 2016 about 5-6 days a week.  Mostly HIIT circuits, but there was walking, running, and also some yoga here and there.  Nothing unusual happened.  I don't feel that I pushed myself too hard.  Sometime during that summer I felt an odd twinging sensation in my right shoulder, but only when I did push-ups with my butt in the air.  The regular ones felt fine.  There was no incident or injury causing moment that I'm aware of, and that in itself is kind of scary.   My rotator cuff wore out on me for no particular reason that I know of.

THE TIMELINE

From January through October 2016 I worked out without any limitations.  Over the summer I avoided those incline push-ups when those felt odd to do, and everything seemed fine.  There was no real indication that I had injured myself until around November.  Out of nowhere it started to hurt when I reached for things above my head, in front of me, or to the side.  Any reaching whatsoever caused a pretty shocking surge of pain to shoot through my shoulder.  This is when I realized that something was seriously wrong.  All arm workouts ceased.  Yoga, and anything weight bearing was a no go, along with pretty much anything that required me to use my arms.  It's crazy how much my shoulder deteriorated after that.  In October I could do all the yoga poses, but by November I could barely lift my arm without pain.

I went to Germany for Thanksgiving that year, and I distinctly remember an increase in pain doing things like picking up my purse from beside me and getting dressed.  I made an appointment in December, and went to my primary doctor in January 2017.  I was sent home by with some rotator cuff syndrome exercises.  They were super painful, but I did them.  She said to make another appointment if there was no improvement after six weeks.  I scheduled another appointment after about four weeks because there were some moments where I felt like it was getting better, but overall it was still painful and clearly not normal.  Also, I wanted an MRI.  By this time I was in pain every single day so I wanted some definitive answers.  Driving, putting on shirts, sleeping, opening doors, and all of these little things we do every day had become very painful.  I went back to my primary doctor in March, and got an orthopedic referral.  Because I'd already been dealing with this for so long, the Orthopedic doctor sent me for x-rays, and referred for an MRI, and Physical Therapy.  By the end of March I had an MRI confirming a small rotator cuff tear and started Physical Therapy by April.  

I went to physical therapy every 2-3 weeks and did exercises 3 times per day every day at home.  I did a set before work, a set when I got home from work, and the last set before bed.  Some days I was in so much pain I needed a break and I'd take a day off, but other than that I was consistent because I really wanted to get better.

Back to Germany I went in July 2017.  This time, it would be for 6 weeks and included a solid month of travel.  I knew it was going to be hard to keep up with my exercises, but I was definitely going to try.  I brought my bands and my over the door pulley system with me, but as expected I wasn't as consistent.

I was in a lot of pain when I came home from Germany at the end of August.  It was a horrible time.  It hurt all day at work, it ached at night, and grew stiffer and stiffer by the day.  I threw myself back into Physical therapy as soon as I got back, but I could tell that there was some serious regression, and the pain was changing.  More things were starting to hurt.  Physical therapy was excruciating, and it was upsetting to see my range of motion decreasing so much.  I was pretty miserable.  Then one morning I woke up and the pain that I usually felt when I lifted my arm in the morning was gone.  I started to get excited, until I realized that my arm was stuck.  Literally stuck.  It was almost like it happened overnight.  One day it was severe pain with movement at the top of my range of motion, and the next it just wouldn't go.  I started to notice different things I could no longer do.  I can't put my right arm behind my back, or even rest my hand on my hip comfortably.  My physical therapist tried to push my arm up.  I had to tell her to stop because not only was it very painful, it just wouldn't go.

THE DIAGNOSIS

When I went back to the Orthopedics in October I was very discouraged to find out that my rotator cuff injury had become secondary.  My shoulder was frozen.  Adhesive Capsulitis.  The capsule around my shoulder joint has thickened and formed scar tissue to the point where there is no room for my shoulder to rotate and move the way it should.  I was told that frozen shoulder had likely run the full course.  Doctors don't really know why Adhesive Capsulitis happens to some and not others.  It seems to be quite a mystery why it comes, and why it goes.  I had never heard of this before and usually others haven't unless they specifically hear of someone else getting it.  I guess it's just not something you hear about, and it is quite bizarre once you start reading up on it.  Sometimes it starts on it's own for no known reason and other times it is triggered by a surgery or an injury that limits movement.  That's what happened to me.

TREATMENT

I felt really sad when I left the doctor's office that day.  I'm frozen?  What the hell?  It sounds like a nightmare, and the research that I did on my own was even more terrifying.  The possible treatment that was mentioned to me was manipulation under anesthesia.  Basically, they would put me under anesthesia so I won't feel anything, and manipulate the hell out of my shoulder to break up the scar tissue.  It could also accompany an invasive procedure to cut away scar tissue.  Every source I came across said that MUA should only be used as a last resort due to risk of fracture or otherwise making the situation worse.  I was terrified by the idea of it, but in so much pain I had to consider that it might be worth the risk.  Turns out, it's not an option for me right now.

When I went back to Orthopedics in November she realized that it was too early for them to even consider a MUA.  The doctor will not do it any sooner than 6-9 months after freezing.  Frozen shoulder has 3 stages.  Stage one is freezing, and likely what I was experiencing during that first year of pain.  This is the most painful phase, and can take 6-9 months.  Stage two is frozen, and this is likely where I'm at now, however this phase typically lasts for 4-12 months.  In this stage the pain is less acute, however my mobility is still extremely limited.  Also, it still hurts quite a bit.  The degree of pain changes from day to day.  I never really know what kind of pain I'm in for when I wake up in the morning.  Sometimes it aches all the way up to my collar bone, for a lot of the day, other days it's not so bad.  The last phase of frozen shoulder is Thawing stage which can take anywhere from 6 months to 2 years.  Years!!!! This is the stage where I would ideally get all or most mobility back.  What that means is it could take 16-45 months or about 2-4 years to resolve.

I didn't really want the MUA, but having it as an option made me feel hopeful.  I was a little bit crushed when I found out that there is really nothing they can do about it right now, and that my condition probably won't change for at least another year.  Hopefully.  The doctor said Physical Therapy is not likely to be effective on a frozen shoulder so I quit.  Cortisone shots may provide some relief, but it won't fix the problem.  There is nothing to do at this point but wait.  I also make sure to stretch my shoulder in some way every day so that I don't loose the mobility I still have.  That's it.  Just sit tight and wait for thawing that will hopefully come.  It took me 11 months to freeze and I'm only 5 months frozen, so I have a long road ahead of me.

 

 WHAT NOW?

When the pain got really bad in November, I felt very lost when it comes to exercise.  I love HIIT.  It really helped me achieve all my fitness goals for 2016, but I was ready to take a break.  I bought a yoga strap and was excited to start focusing on Yoga and flexibility.  Then my shoulder stopped working, and there was a period of time where I quit exercising altogether.  It was hard for me to accept that I physically could not do what I wanted to do, and I sort of thought, I'll do the physical therapy, get better and then I can pick up exercising the way I want to.  Well, that didn't happen, so I did Callanetics because it was low impact.  Then I started doing HIIT again, but with substitutions for exercises my shoulder would no longer let me do.  It's funny what you can get used to.  The hardest part was going through that excruciating pain of freezing, being so scared of what was happening and not knowing how bad it was going to get.  I cried when I found out what this was, and how it was going to be from now on, but shoulder pain and the limitations that come along with it are part of my life now.  I can't lift my right arm above my head.  Cross body movements are very uncomfortable in general. I can't stand with my arms crossed because the right arm won't sit comfortably across my body.  Shaving my armpits is extremely difficult because I can't reach over to the left, or get my right armpit to open much.  Doing my hair up in a ponytail forces my shoulder into a position it does not easily go.  I can't lift things or make certain movements without some degree pain.  My arm can only reach so far, and my shoulder cannot extend beyond 90 degrees.  It just stops.  On good days, I can almost forget my shoulder is frozen.  I'm reminded of it mostly when I sleep, or when I accidentally move my arm too far reaching for something. If my body jerks too much on a sneeze, that slice of pain is pretty quick to remind me.   On the bad days I just deal with the pain.

Is it silly that one of the things that upsets me the most is that I can't do handstands anymore?  I was a gymnast growing up, and I will always be an avid fan.  As I've gotten older the majority of my acrobatic skills are either no longer possible, or I'm too scared to try, but I've been able to do a handstand for as long as I could remember.  I could even walk in circles on my hands.  People all over the world aspire to do a handstand and I could do handstand pirouettes, with ease.  I know I'm being dramatic, but it was just a fun thing I could still do, and I liked that, but now I feel this weird sense of loss that it's something I may never do again.

I'll check in with my doctor again sometime in the summer and we'll go from there.  I may give acupuncture a try for symptom relief, but there isn't much else for me to do but wait.

Looking back, I keep wondering if I could have done something different.  Could I have prevented this?  If I'd gone to the doctor in the summer and said it hurts when I do push ups she probably would have just told me to stop doing push ups.  I went to the doctor as soon as it started to affect my daily life, and kept going to the doctor for answers.  Should I have taken the cortisone shots that were offered?  I did the exercises.  I never let the pain stop me completely from moving my shoulder.  I slacked off on PT in July/August, but never stopped moving it.  I think by that time, this thing had already been set in motion.  Once the shoulder starts freezing I don't think there is any stopping it.

Having a frozen shoulder sucks.  It's not the worse thing that could happen to me, and that kinda sucks too.  The upside?  Well, I still have my arm, and it works; mostly.  That's good.  I can't really think of anything else except, I've discovered how much I enjoy sleeping with a teddy bear.  I should have never stopped. 
 
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