adjective: unable to be seen; not visible to the eye
noun: a disease or period of sickness affecting the body or mind
You might have heard the term around the internet, “Invisible Illness,” or maybe you haven’t.
Basically, it’s a person who is very ill, but to the human eye looks as healthy as anyone else. We go about our day, trying to make it from one point to another while the people around us don’t understand why we feel so bad when we look “SO HEALTHY.” In some ways it’s a curse, in other ways, it’s a blessing.
Over the next few months, I’m going to be dedicating a few columns to the voices of Invisible Illness. So you can see their faces, read their stories and try to become more aware of what it’s like to walk in their shoes. Maybe next time you see someone park in a Handicapped spot and they “look healthy” to you, you’ll smile at them rather than frown, and help spread awareness about how not everyone that is sick looks it.
This week I welcome two amazing women who, like myself, are living with Complex Regional Pain Syndrome or as the medical community likes to call it CRPS/RSD.
It is a rare condition caused by damage or malfunction of the peripheral and central nervous systems, usually caused by trauma.
In a nutshell, the brain and nervous system don’t realize that the original trauma has healed. So the brain signals the nervous system that the injury is still there.
The nervous system sends pain messages from the brain out to the affected limb, much like the same pain messages the brain sent after the original injury occurred. This results in crippling pain that varies from moment to moment. Doctors still aren’t sure what causes some people to develop CRPS while others with similar conditions never get it. Doctors do know that more than 90 percent of the diagnosed cases of CRPS are caused by an injury or traumatic event. And get this, if you are a woman you are at least 30% more likely to get it versus a man.
With all that said, please welcome this week’s voices of Invisible Illness;
Shamika Jones: Invisible Illness- CRPS
I was diagnosed with Complex Regional Pain Syndrome also known as Reflex Sympathetic, (CRPS/RSD) in 2013. My CRPS/RSD affected my right arm (from my shoulder to my fingers.) This disease is called “The Invisible Disease” and if you look at me, you cannot immediately tell that something is different, until I point it out.
I woke up one day, and my thumb was hurting. I did not think anything about it. A week later my wrist started hurting. It was so painful that I couldn’t move it. I went to the emergency room.They said it was tendinitis and that I had two fibrocartilage tears and then they proceeded to treat me by prescribing medicine. The medicine didn’t work! I went back, was told to go to a doctor that focuses on treatment of hands.
I was told the same thing, that I had two torn fibrocartilages and was given even more medicine for treatment. In addition, they put me in a cast and was told that the cast would help. It seemed to get worse, so I returned, and they said I needed cortisone shots in my wrist. I was told that I would need two, so they proceeded to give me the first shot. That one shot was so painful! I screamed and hollered so bad that my mom and dad had to hold my arm and legs. No way were they going to give me another shot. It was too painful.
They put me back in the cast and my pain became worse. My hand, fingers, and wrist swelled even more. I went back to the doctor and explained that nothing was working. They took the cast off my hand and wrist only to find that my hand was extremely swollen, discolored, was covered with hair.
Keep in mind; I don’t have hair on my arms or legs.
My hand looked UNREAL.
It was at that point that they suggested I make an appointment with a hand specialist. Upon my visit to the hand specialist, she immediately informed me that I had CRPS and that I should see a pain management doctor to get injections. So I did, and he confirmed that I did have CRPS. He gave me the injection, and it helped a little. Three more were needed, and that was a help. Before the injections, I walked with my hand and arms on my chest. After the injection, I was able to put my hand down.
It is crazy none of the Doctors or Emergency Room staff knew what was wrong.
Dealing with CRPS is very hard. Every day of my life I’m in chronic pain. My hand stays swollen; my skin always feels like it’s burning, and my right arm feels like it is on fire. Even walking outside with the wind blowing is painful! Certain fabric textures can’t touch or be on my skin because the slightest touch is excruciating.
People who do not have CRPS can put ice on a swollen area, but people who have CRPS, like me, cannot use ice. The ice is too painful and can cause really bad burns on my skin. Ice can shut nerves down, cause CRPS to go to the next stage and can make CRPS spread. CRPS has caused me to be depressed. I am not able to do what I used to do. I have to be cautious about everything. In the summer I used to swim, but now I am not able to get in water unless it is warm.
I have lost mobility in my right hand. My fingers are bent. Doctors call it swan neck deformity of the finger.
I deal with memory loss, fatigue, and dizziness. Every day I feel like a stabbing, twisting, pulling, burning sensation in my whole arm. I require help the majority of the time. There are MANY nights I can’t sleep because of pain. If it is cold in the house, I am not able to cover up because the bed covers burn my arm. There are even personal things I need help with because I can’t use my hand.
Allison Cronkwright: Invisible Illness- CRPS
It all began in July of 2015. I was an active runner, health food nut, and worked as a Personal Support Worker providing all necessary care for seniors at a Long Term Care Home. My life was filled with happiness and love. Everything was going well for me. Living, what to me was an excellent life with my boyfriend of ten years, and working my dream job. I couldn’t be happier.
That is until everything changed. I have been plagued with back problems since I was a little girl. I fell when I was twelve. It happened at the beginning of a two-week sailing trip with my mom and my older sister. I have always been a klutzy child, often unaware of my surroundings. It was no different on that day I decided to jump across the cabin entrance into the hull of the boat. I overestimated my step and fell seven feet onto my tailbone. Because we had just started the beginning our vacation, my mother was hesitant to turn around, so I wiped my tears and moved on.
That wasn’t the last time I would fall on my tailbone.
I fell down a set of metal stairs while on vacation in British Columbia, was a passenger in an awful car accident at the age of eighteen and had various minor trips, slips and falls after that. Needless to say, I was prone to hurting my back. At the age of nineteen, I threw my back out for the first time by simply reaching to pick my sandals up off the floor. I went to the walk-in clinic, had x-rays done which showed no bone or joint damage. The doctor chalked it up to a muscle spasm, gave me some meds and sent me home. The years to follow were plagued with two or three of these muscle spasms, but no additional damage.
I began working as a Personal Support Worker in 2010. My job consisted of performing all daily tasks that my patients were unable to do themselves. This included bathing, dressing, lifting, turning, feeding, as well as moral and social support. It was a massive job, but it came naturally to me. I fell in love with each resident I looked after and became just as close to their families.
My co-workers often called me the “Senior Whisperer” because I was able to provide care to those who refused it from everyone else. Daily I was abused by residents, not because they understood what they were doing, but because they were suffering from various forms of dementia. As one could imagine, this job did a number on my back. While turning a resident in 2011, I again hurt my back and had to be off work for a week. At no point did I ever consider switching professions, because I loved my job so much. I felt blessed to be able to do what I was doing, and wouldn’t have changed it for the world. All the while, my back continued to take a beating. Things came to a head in July of 2015, when I began experiencing symptoms of sciatica and low back pain.
I visited my doctor’s husband who is also a family doctor in the beginning of August, as my doctor was on maternity leave. He looked me over for less than two minutes, had me do a couple of movements, and diagnosed me without any diagnostic imaging as having a “simple disc herniation”. He handed me a prescription and told me over eighty percent of the adult population had herniations, and that it was nothing to “worry about.” No time off work, no physical therapy recommendation, just basically deal with it, and if it still bothered me after six weeks, I was told to come back. My condition was slowly declining instead of improving, as he told me it would.
Six weeks later, I returned to the doctor in tears. Work was becoming difficult, and my symptoms showed no signs of improvement. Again he told me “it is what it is,” handed me a different prescription, no diagnostic imaging referrals, and sent me on my way.
My boyfriend, Aaron became increasingly frustrated as nothing was being done for me, he watched me decline slowly without being able to help. He suggested I begin physiotherapy because it didn’t seem like I was getting help from my family doctor. Within ten minutes of my first appointment, my physiotherapist examined me, and said I had spinal stenosis, not just “a simple disc herniation”. He suggested I return to my doctor and demand either a referral or at least some diagnostic test. At this point, my family doctor returned from her maternity leave. She was of no help and sat there and looked me in the eye telling me what I had already been told; “it is what it is.” She also told me that she doesn’t usually refer patients until suffering has lasted at least six months. She ordered an x-ray and sent me on my way. I continued to work. I didn’t know what to do, I couldn’t just simply take time off work without some form of compensation, and my doctor was of no help. My x-ray results showed that I had minor scoliosis. I was told that it was caused by overcompensating in favor of my non-afflicted side.
Each day of work became increasingly difficult; the pain was at this point unbearable. I would hide in the bathroom between patients and cry, not just because of pain, but because I was at a loss of what to do.
Again, my supportive boyfriend suggested I ask my physiotherapist to write my family doctor a letter requesting an MRI. This proved to be successful. She took the word of my physiotherapist, but not the word of her patient who came in crying every three weeks begging for help.
The paperwork for the MRI was completed on November 16th, 2015. On Friday, November 20th, I was attending to a resident near the end of my shift. She was agitated after receiving a bath and proceeded to smack me in the exact spot where all of my pain originated. I was thrown into an anxiety attack because the pain was intolerable. I had scheduled a salon appointment the next morning, but when I woke up I couldn’t move, all I could do was scream.
Aaron woke up to me screaming, vomiting, and crying from pain in the bathroom.
He had had enough and rushed me to the hospital. I was admitted almost immediately, and received an MRI within an hour, which in Canada is unheard of. The MRI results came back shortly after that, and they read like a crime scene. My L4/L5 disc had herniated so badly; it kinked my nerve roots. The doctor was extremely concerned and contacted a neurosurgeon to see about a surgery referral. I waited for my surgery for a week in the hospital. I was unable to walk, or even go to the bathroom due to the disc pushing on my cauda equina nerve root.
My surgery was scheduled for November 27th, and I was told that the neurosurgeon I was referred to was fantastic. Unbeknownst to me when I arrived at the hospital where I was to have surgery, the surgeon was not the doctor that I had been referred to. My new doctor was a young, cocky neurosurgeon who worked under the one I was initially referred.
All I remember after surgery was waking up to my feet feeling like they were burning. It felt like extreme cold, and pain plagued my feet; the nurse told me that it was from the anesthetic that was used during surgery. This burning feeling never left. My recovery was unlike what my doctor said it would be. The pain I felt in the weeks after was different, but showed no improvement from before the surgery. I returned to my neurosurgeon six weeks later, which was when I was supposed to return safely to work. I explained to him all of the issues I was having, the cold burning feet, and recurrent nerve pain. He, just like every other doctor had done in the past, minimized my concerns and simplified them as post-surgery neuropathy.
My condition wasn’t improving; I was so frustrated, confused, and tired. The surgery was supposed to fix me. They told me I would be back to normal; that was not the case. I returned to my doctor for help, because my feet were now turning purple and blue. The burning pain was unbearable, and something just wasn’t right. My surgery was on my back, and yet my feet were affected. My doctor didn’t know what to do; my neurosurgeon continued to deny any wrongdoing or even knowledge of what was happening. I had nothing left, my energy was drained. I needed answers and fast. I was referred to an Internist who examined me for an hour and asked me a thousand questions. It was this meeting that would change my life forever.
“You have Complex Regional Pain Syndrome,” he said.
The only information he gave me before he ran out the door, was a piece of paper with this strange CRPS name on it. He suggested I google it to find out more, which I did. Every symptom I was having matched what the doctor said to me. All I could do was cry. How is this possible? Was it a routine back surgery? Did I do something wrong? What does this mean to me?
The symptoms of CRPS are different between every patient, but the one thing that is the same is the pain; breathtaking, tear jerking, life changing pain. Something that words can’t even justify. It is a pain that makes pregnancy look easy; a broken wrist feels like a stubbed toe. It is intense and never wanes. Treatments are not guaranteed to work, and the only hope is to reach a slightly tolerable level of pain. All of the treatments I have received so far have done nothing to relieve my pain. They only break my heart with the lost hope of normalcy.
This diagnosis means I will never again return to my career, and to me that is the biggest heartbreak. My boyfriend watches me live in constant pain 24/7 and can not do anything to take it away. On many occasions, I wanted to either cut my leg off or simply give up entirely. People tell me to be positive, but they don’t live in this hell. My memory has been affected to the point I get lost when I am out. I cannot articulate sentences the way I once could, and sometimes I can not even remember the words I am looking for. I also get intense tremors in my legs that have caused me to fall, so now I have to use a cane to get around. Emotionally, I am stressed, ashamed, depressed, and embarrassed. I have become the topic of every conversation when I go out. I avoid going out now because I cannot tolerate people staring and asking me a million questions that I do not have the answers for. I don’t want to be the center of attention. I don’t want to live in constant agony with no reprieve; I don’t want to live like this anymore. There is no cure, it only gets worse over time. The only option I have is to exist. Exist within this hell I now call life.
My boyfriend is the greatest thing to ever have happened to me, without him I wouldn’t even try to make it through. He is the one that gives me the strength each day to carry on, to fight this demon and most importantly live a normal life as possible.
I am not sure at this point what my next step is, what my next treatment plan may be. All I know is that I am strong, loved, courageous, and I will beat this. In my lifetime, there will be a cure. That is the one hope that I have that keeps me going.
If you would like your story of Invisible Illness to be told, I would love to share it. Let me know by posting your interest in the comments section below and I will contact you personally. The stories of our lives help spread awareness, the more awareness the more understanding. One by one we can make this a better world for everyone living with a disease, physically or mentally. It all starts with one word… understanding.