January 26, 2016

From Shoulder Injury to Cockatoo Saviour

By Manage My Pain User, Janice
Moving forward after dealing with chronic pain for years
Janice is focused on moving forward, after a very challenging journey with pain
I'm 59 going on 79. I used to be very active - I could hike 10 miles uphill and down, go out for evening shows, kayak, cross-country ski, and travel. Now, I miss just being able to walk.

How did I get to be this way?

It started out with a lifting injury to my right shoulder when I was 28. I got the usual treatment with NSAIDS and physical therapy, but the shoulder did not heal well. It plagued me, slowly getting worse year by year. I went to chiropractors, acupuncturists and massage therapists. Doctors, of course, noted this to be normal age-related crepitus pain.

However, the pain interrupted my sleep, so I was given the wonderful diagnosis of fibromyalgia at age 31, put on Elavil for depression and Benadryl to help me sleep. I was told to exercise, had more physiotherapy, and was given a cortisone shot under the scapula. The relief was temporary and short-lived - I was told there wasn't much anyone could do for pain in that area.

To keep working as a nurse, I changed roles to work with infants instead of adults, and this allowed me to work, despite my pain, for an additional 11 years.

In addition to my shoulder "fibromyalgia", I had frequent migraines, and irritable bowel syndrome. I was given a slew of medication, but each time I brought up the shoulder, I was told it was fibromyalgia. I had my doubts but I got labeled, and then no one would think about the shoulder pain as anything but FM. The picture was muddled by neck and other pains so even I got confused. I didn't let it slow me down, therefore I wasn't taken seriously.

More frustration ensued as the pain worsened. By this time, my shoulder went "clunk clunk", every time I moved my right arm. I joked that I was the only person who could go hiking and come away with severe shoulder pain. My active life in jeopardy, social life withering, marriage coming apart, I saw a sports specialist who gave me trigger point injections. The relief was immediate! I was giddy with hope again; however, insurance only covered them for 3 months. To keep working, I began to give them to myself. I got by this way for years.

Eventually, however, I had to take on a desk job to accommodate my body. All I could do now was work and sleep to go back to work. It was very distressing. I lost my marriage and went from pain specialist to pain specialist, getting nowhere.

One pain doctor caused me so much mental anguish that I had anxiety attacks going to doctors after that. He didn't even do an exam but nicely dismissed me from the pain clinic saying that all I needed was "a good meditation program." From then on I never saw a doctor without a friend with me.
I cried at each and every appointment until 2010. I seriously thought I would never laugh again. I had a mental breakdown by 2006, and I was ready to die.
I quit going to work and begged doctors to see me. I saw I wasn't getting anywhere, and I started keeping a hand-written journal. I finally got an arthroscopic procedure which showed that my pain was real. I was sent back to the same pain clinic I was dismissed from. I went from vicodin to methadone and eventually long-acting morphine.

Still, I tried to work, and got another desk job closer to home. I lasted 6 months before quitting. My yearly income had dwindled, and I couldn't make ends meet. I had additional surgeries performed on my shoulder, and my pain kept flaring. I was also diagnosed with Tarlov Cysts and now everything else hurt. Therapists worked with me in the pool, but I still saw no relief or progress. It hurt just to drive to get the PT and I was so tired that driving became unsafe. My sessions became more sporadic and I finally stopped going. It crushed my spirit. I have to thank God and my faith for keeping me going.

Over time, I regained my strength, and I started to see and feel improvement. I also won my disability case, after being denied twice. It was truly the battle of my life.

My current list of diagnoses are:
  • fibromyalgia
  • myofascial pain syndrome
  • snapping scapula syndrome
  • cervical degenerative disc disease
  • 2 Tarlov cysts
  • migraine headaches
  • major depressive disorder (really?)

In 2013, I started logging my pain with " Manage My Pain Pro". It has truly simplified my life. What I used to do longhand now just takes a few minutes each day. And I can find information needed so quickly, something that was frustrating and difficult for many years. It's accurate because I keep it up to date. So when I look back, I believe what I wrote. I prepare for each and every doctor's appointment ahead of time by reviewing the charts, pain levels and prn medications taken. The more I use this app, the more I learn I can do with it. With this app, I never lose sight of what is happening with my body, and it gives me the confidence to have the answers to any doctors' questions.
Today, I focus on what I can do. It's such a waste of time and energy to lament the past.

I had a difficult time writing this piece as I relived the grief, the losses and the years of wasted time and money trying to get answers. I now have 4 wonderful parrots that share my life. They keep me going, make me laugh and give me love. My cockatoo asks me now, "Are we going out today?" He will get me out the door when nothing else will.

My pain is currently medically managed, and I moderate the exercise to my tolerance. I enjoy my good days, which are too few, and give myself a lot of latitude on the worst of days to do nothing. It's not about the tasks that get done or don't get done. I no longer feel guilt about being unproductive, and I feel blessed to have enough to get by comfortably. I rely on God and no longer ask "why" or have the need to make people understand. I have made new friends in the last 5 years and they are people who, like me, will help me out if needed and don't need long explanations.

I'm alive, I got through the worst period of time that I could never have imagined. If any of this helps one person, it was worth the agony of writing it. You can get your life back. It will be a different one than before the pain but life is full of surprises so don't ever give up