Michigan Pain Survivor—Learning a New “Normal” By Karen Shay

Michigan Pain Survivor—Learning a New “Normal”
By Karen Shay

Editor’s Note: Karen Shay spent 23 years practicing in Occupational Therapy as a treating therapist with patients having multiple types of disorders and diagnoses, as well as a manager. After two cervical spine surgeries and one lumbar surgery, resulting in nerve damage adding to the already debilitating chronic pain, the Grand Rapids, Michigan woman hasn’t worked in her much loved career for five years. In a conversation with the National Pain Report, it became obvious that she has a heart for helping others living with chronic pain and we offered her an opportunity to speak out which, we are happy to report, she has accepted.

Here’s her story:
I spent nearly a quarter of a century helping people recover and be as independent as possible with whatever their physical and mental diagnose/disease left them to deal with in life. Often in rehab this means learning to live life in a new “normal”.

For the last eight years, I’ve been one of those people learning to live life in a new “normal”. Everything I worked so hard to achieve in my career and life had been shredded to pieces by my spine issues and that leading to a neurological nerve disorder, called Central Pain Syndrome, leaving me with moderate to severe constant chronic pain. I loved my career, but one cannot fight nerve pain from damaged nerves, it fights back with a fierce intensity and the more you try to “push through” the pain, the more it pushes right back. Think of it as trying to fight through your worse tooth ache. You just want it taken care of. Well, with this diagnosis there is no taking care of it. Everything was tried. I was told by many specialists, as compassionately as they can be that they were, “very sorry, there is nothing that can be done…” I will have to learn to live with the 24/7, 7-8/10 pain (that is after the medication used to help). I did jokingly ask a physician to decapitate. He was horrified at first until he realized I was joking.

It is a challenge dealing with multiple spine issue, nerve damage and chronic pain. It leaves completing daily tasks difficult to impossible, as well as extremely irritating to the affected nerves, causing even more pain. It is a vicious cycle. I’ve been implementing my skills in Occupational Therapy (adaptive equipment, compensatory techniques, energy conservations, time management, etc.) on myself to be able to achieve as many tasks I am able that most people just automatically do on a daily basis.

Prior to my first cervical surgery I fought neck pain for 18 years while being a wife, mother of two kids, working and going to college. Of course I tried many non-invasive treatments (i.e. chiropractic, Physical Therapy, acupuncture, medical massage). It got to the point in 2008 where I had no choice left but to have surgery. I was unable to hold my head up, it wanted to flop over. I was having occipital neuralgia, I couldn’t hold things, had a hard time controlling my arms, my legs were giving out and I was suffering “Charlie horses” in my throat, arms and legs. I had surgery on the 3 herniated cervical discs. One of which was sitting against my spinal cord. It was so successful that I wished I had done it years before! I was able to go back to work in 12 weeks!!!

It was a struggle of course. The surgeon said it takes up to a year for the nerves to totally “calm down”. Not quite a year later I started having problems again with my neck, shoulders, arms and hands. It was tough working through the repetitive heavy lifting; pushing and pulling therapists in long term care do every day. The neck issues continued to the point I was unable to perform simple tasks, let alone the heavy tasks. I was unable to reach for the telephone, write documentation, do computer work, hold my arms up to drive, cutting, chopping and stirring food, lifting a cup to drink, brushing ones hair and many activities of daily living. A person tries to keep going, to push through it and denies what is going on. I believe most do. But, once one becomes so extremely affected from all the decreased coordination, weakness and pain there just is no ignoring it any longer.
So, in 2011, after trying many noninvasive procedures, I decided I had to have surgery again. There were no guarantees given. When all you have left is hope, you have to try! It didn’t get worse, the 24/7, 9-10/10 pain decreased to 24/7, 8-9/10, after the pain meds. That’s a plus!

I was referred by the surgeon to Pain Management. They were given my MRI results, diagnosis of post-laminectomy syndrome and all documentation from the surgeon. Including a statement, “this patient will never be without pain. I did everything the pain management team requested to relieve this pain, (all the while enduring unbelievably horrific, unprofessional treatment from the majority of staff at the pain clinic (medical assistant, Physician assistant, Nurse practitioner and even the pain doctor). They treated me like a drug seeker. They were right about one thing—I was seeking, but what I was (and am) really seeking was relief from the horrendous pain and a way back to my life! When you are curled up in a ball, teeth chattering, body is shaking, you’re hardly able to breathe and vomit from the pain, one tries all one can to find relief!

I did everything I was told without questions. (I did notify the referring surgeon and my PCP of the treatment and was encouraged to try and continue). I had the multiple injections in my neck, Physical therapy, behavior therapy, trialed multiple anticonvulsant and antidepressant meds used to treat nerve pain. I ended up with many horrendous side effects; four trips to the ER for anaphylaxis and one for TIA like symptoms form another. I was a very compliant patient. You have to show you are trying!! Because they tell you if you don’t, they will kick you out. As many seeking help at a pain clinic know! Then how do you find help with records showing you aren’t trying?! The attitude of others follows you.

After 8 months of many issues (I won’t go into details here) I asked my PCP for a second opinion. I was referred to a wonderful, kind, understanding neurologist who then referred me to the University of Michigan Neuropathic-pain clinic in Ann Arbor, Michigan. At my first visit at the U of M I heard, “Well! First, let’s see what we can do to get you out of the pain!” (Thank You, God!) After several trips and diagnostic tests I was told I had multiple cervical spine issues. One of the diagnoses given was Central Pain Syndrome due to the nerve damage with the spinal nerve causing the severe pain. It was explained that it was very similar to Complex Regional Pain Syndrome, which I was originally diagnosed with. I was actually told to tell healthcare workers I had CRPS due to “they would be more familiar with that.”

http://en.wikipedia.org/wiki/Central_pain_syndrome
http://www.ninds.nih.gov/disorders/central_pain/central_pain.htm

So, I finally got a great team of doctors to help me allowing me to continue on my bumpy journey trying to figure out my new “normal”. In 2013, I started having issues from 3 herniations in the lumbar area. I worked for a year with Physical therapy and on my own to avoid surgery because there was a concern the Central Pain Syndrome would most likely spread. The Central Pain Syndrome has spread.

Many say it is hard for others to understand what living in chronic pain is like. It can be very hard to describe. It takes time to be totally heard. I have had many healthcare workers not have the time to listen to my full description. I actually had some tell me part way through, “That’s enough!” “I think we get the idea.” One person even held her hand up to stop me. But seriously, if they are going to treat me, I really needed them to understand. It took me a long time to realize the variety of pain I was having. It was confusing to me! It wasn’t until I came across the McGill Pain Scale, http://www.painedu.org/Downloads/NIPC/Pain_Assessment_Scales.pdf, and http://pain.about.com/od/testingdiagnosis/ig/pain-scales/McGill-Pain-Scale.htm, was I able to fully realize.

On a physical level, explaining the pain is different for everyone. For me, it is different types of pain, the neuromuscular neck and back pain from the spine disorders and the neurological pain from the nerve damage in the neck, as well as from the central pain syndrome, http://en.wikipedia.org/wiki/Central_pain_syndrome . It is located in the back of my head, neck, throat, shoulders, upper back and chest, armpits, arms and a bit in my hands. Since my last surgery it has spread to my low back all the way down my legs. It is a constant, moderate to severe in intensity, made worse by repetitive movements such as, walking, bending, reaching, pushing, pulling, stirring, chopping, typing, writing, lifting a glass to drink, etc. It is irritated when I am touched or hugged or just bumped. I have to use a pillow to rest my arms on while sitting as the weight of them being unsupported is painful. The weight of jewelry on my neck and wrist, as well as clothing that has elastic bands is intolerable. I can at times wear some jewelry for a bit, but am often seen whipping it off due to the intensity of nerve irritation. Stress can cause it all to increase as well.

Even just tilting my neck wrong to do activities as simple as working at a table or desk doing bills, typing or crafts can lead to episodes of occipital neuralgia, http://www.ninds.nih.gov/disorders/occipitalneuralgia/occipitalneuralgia.htm, due to nerve damage high up in the neck, at the base of the skull. If I turn it wrong it will pop and these episodes can last for days to weeks. There is a deep gripping, burning, aching in the neck and shoulders as well as the low back. The sensations of “pins and needles;” shocks like sticking your finger in a light socket, as well as bursts of sharp pain similar to the pain of a toothache have been the most noticeable areas controlled by the medication I am on! I get “Charlie horses” when I yawn, at times leaving the front of my throat popped forward requiring massaging to relax it to go back into place. When I get the “yawns” if able, I will go to bed to avoid repeated yawning. I have great fear of someday having my neck stay that way and not go away. My voice gets gravelly at times. I couldn’t sing prior to my cervical spine surgery, but now I REALLY can’t sing.

It is extremely hard having one’s life overtaken by such horrendous pain. IT DOES NOT GO AWAY!!! IT IS ALWAYS THERE! ALWAYS! It keeps you awake at night. It is there as you are waking up. With every move! Every. Single. Breath. It can lead to panic attacks with wanting to escape your body!!

On an emotional level, your life as you once new it is shredded to pieces. It is like a part of your soul has died. You try to hold tightly to what was and do all you can to get it back. Everything is overshadowed by ever present intensity of the pain. You endure so many losses in so many areas of your life. It leaves you angry, bitter, isolated and grieving. It is very hard seeking help, to be treated as a drug seeker from the moment you enter the examining room, to hear the demeaning comments by some healthcare workers, (and this is with subjective statements from my surgeon and MRI findings as to what is wrong!), being interrogated, to not be listened to about what you want to share, to keep putting yourself in these vulnerable situations to try to get better so you can have your life back, only to be told repeatedly, “ you have to learn to live with the pain for the rest of your life.”
The worst is being unable to pick up my precious grandson when he holds his arms out to me or to just up and play with him or babysit him whenever needed.
So, what is it like? It at times can be like you just want to die. You stare out the window at the clouds floating by and wish to God you could just float away with them! But, of course, that would never be an option. The tremendous pain it would cause others would never be healed!

It tears up many relationships. People in our lives can’t understand this invisible hell! It leaves the sufferer hearing many demeaning comments such as, “Take it for all its worth!” referring to Disability benefits. Or, “There MUST be SOMETHING you can do at work!”, “Those doctors hand out pain pills like tic tacs! I know a lot of pill poppers!” “I wouldn’t have time for that!” “I work in pain all day long! I have for years!” “I am sure there is SOMETHING that they can find to treat you!” “Well! At least it isn’t CANCER!”
Then there are the silent accusing looks. The shocked looks when you tell someone, “’Yes, I would actually go back to work! I loved my career!” These comments and attitudes cause a whole new layer of pain and grieving in ones heart for they are often said by “loved ones!” Those we dearly need support and encouragement from. As I said, it adds a whole new level of pain and loss.

I am very blessed to be going through this journey with the great support of my extremely caring, understanding and loving husband of 34 years, my wonderful children and their spouses, and my precious grandson, as well as close friends that “get it”! Although some see part of what I deal with for I am not able to hide all of it, only my husband sees the “real stuff.” He sees the me that still grieves the loss of my much loved career, the me hiding behind the makeup, smiles and laughter. The me that struggles to coherently participate in conversations while socializing, who can’t sit for very long, has to lay down throughout the day and who still curls up in a ball in pain. He sees the difficulty I have with simple things such as just holding a camera to take my much loved nature pictures. The list goes on! It’s very hard seeing the helplessness and pain in your loved ones eyes when they are watching.

While exploring and researching information on chronic pain over the past few years, I found it enlightening to come across so many chronic pain support groups out there. That is awesome, yet horrible to realize that there were so many sufferers! One thing for sure, I realized I wasn’t alone with this! Many sufferers were, as I am, suffering the multiple losses and emotions mentioned previously, we are all seeking answers on so many issues, trying desperately to grasp a hold of something, anything, to make this life better or at least somewhat tolerable! One thing for sure, it is great to have a community to share your thoughts and feeling and to know they all get it! There are groups that share a lot of great information!

Then there are groups are hard to be a part of. It takes looking around to find one that fits your personality. Some can become overwhelming with so many members that your posts can get passed over. You can be left with feeling left out. The negativity, bitterness and anger at times can be overwhelming. There are groups that aren’t well monitored and allow inappropriate discussions like how to “safely” take your medications and drink alcohol (which there is not safe way!) Or discuss how to wean off your medications, how to occasionally take an extra med even though it is not prescribe that way, exercises you can do, (which are very unsafe practices and can lead to death in some cases). So a person has to look around a bit to find a place they are comfortable in.

I have tried repeatedly (with God’s help) to take the “shredded” pieces of my life living with chronic pain and rebuild a new “normal”. Throughout learning to live with all this physical and emotional pain, gripping tightly to what was, I have struggled in my heart to find significance, a purpose, with where I now belong.
One cannot escape going through the stages of loss this puts the sufferer in: denial, isolation, anger, bargaining and depression to hopefully someday finding acceptance. And this acceptance can lead to a sense of peace and joy in a new “normal.” Yet, I am still gripping tightly to what my life use to be! It’s just hard to let go! I have slowly found moments of peace and joy, less fleeting, taking over my heart. Maybe it is because God’s creation is being brought back to life with springtime finally arriving, but I am feeling renewed and ready to live again!

I want others to know it’s worth the fight! I hate seeing chronic pain sufferers get stuck along the way in bitterness and anger! There are others needing us to help them find their new “normal!’ We have to lend a hand to each other in this journey!!

! I have decided to use what this journey of living in chronic pain, as well as my skills of working in Occupational Therapy; to help other chronic pain sufferers put together a “tool box” with tools to build their new “normal.” I am diving into the life of blogging to share these things! That will give me a place to share these tools for fellow chronic pain sufferers to help us put together our new “normal”.

I’d love to have you join us at my new blog, Functional Living with Chronic Pain. You can subscribe at http://functionallivingwithchronicpain.blogspot.com/