I had no clue what cervical dystonia was until I was diagnosed with it. This is my story.
My Personal Story
I've been a server for most of my adult life, carrying trays over my shoulder loaded down with tons of heavy dishes day in and day out, hours at a time. When I started having neck and mid-shoulder pain, I just knew it was from the daily stress I was putting on those muscles. Not only was I constantly carrying these trays over my shoulder, I was also constantly lifting bus pans full of dishes and causing even more strain on my neck and shoulders. It would not be a stretch to think this constant stress caused some small issues that could go away with some rest and relaxation. So I quit my job.
After a month or so of being off and taking it easy, my neck and shoulder pain didn't seem to ease at all. If anything, it was getting much worse. It started innocently enough—feeling like I had some slight muscle strain in my upper back and neck. It was just sore all the time and there was a weird tingle that kept happening that ran from my shoulder up the back of my head, and sometimes it caused me to have migraines.
Another month goes by and there was still no relief. I had started yoga, I changed my pillows, I was using heat at night, basically trying everything I possibly could to get this worsening muscle strain to ease up and heal for me. Instead, it was getting worse. The once occasional annoying slight tingle became a constant, spiky tingling that ran from my elbow to the back of my head on the left side. It was time to see my doctor.
It Took a Very Long Time to Properly Diagnose My Disease
I told my doctor all my symptoms—constant tingling running up and down my arm to the back of my head, some slight pain in the mid back, migraines occurring from this more often, and an occasional spike in pain level that would take my breath away. She ordered an MRI, stating that she thought I had a bulging disk in my neck and it was likely pressing on a nerve.
The MRI showed that my C2-C3 disks were unremarkable, C3-C4 unremarkable, C4-C5 had a slight bulge, and C5-C6 had a significant bulge. She decided that the bulging discs between the C4-C5 and the C5-C6 area were what was causing my issues. I was sent to a spine specialist for physical therapy and injections.
I did a full year of physical therapy and injections to no avail. Nothing helped. The specialist that was "trying" to help me gave up and sent me to a pain center. He said there was nothing more he could do for me, and I was just going to have to start on pain management.
So I starting going to a pain management center. However, this was the best thing that could have happened. My pain management CRNP was better with me than any doctor I had seen up to that point. She sat down with me at the very beginning of my course of treatment and had me explain each and every symptom, in detail. At this point, I was in terrible pain day in and day out. The therapy didn't help, the injections did nothing, and I was living on pain meds and depression.
I explained that now my pain level was a constant 7 (on a pain scale from 1 to 10), even with the low milligram pain medications I was on. The pain traveled from my neck down my left arm, all the way to my fingertips. There was a constant tingling on the left side of my face, and the once tingly sensation that ran from my arm to my neck was now a constant burn. Migraines were now occurring almost every other day, like clockwork. The worst of all was once a month, anywhere from 1 to 5 days at a time, I would have a severe flare up of pain. I was calling these "spells". When I would have a spell, it felt like someone had shoved a molten hot rod of steel beside my spine from my neck to my ribs on the left side of my body. No amount of medication would ease these spells! To make it worse, when this flare up would occur, my head would jerk toward my shoulder in these intense spasms.
She immediately ordered a nerve conduction test and a new MRI. The nerve conduction test showed that I was suffering from a rare disease called Cervical Dystonia. The MRI showed that my neck had straightened completely—a pathological disorder known as cervical kyphosis, or military neck. Along with this new, very odd occurrence, my MRI showed this, (I'm copying it word for word and I'll try my best to explain what it means):
- C2-C3 - unremarkable
- C3-C4 - uncovertebral, uncovertebral DJD, without foraminal stenosis
- C4-C5 - uncovertebral, uncovertebral DJD, facet arthropathy without foraminal stenosis
- C5-C6 - Disc osteophyte, complex and facet arthropathy without significant foraminal stenosis
- C6-C7 - disc osteophyte complex, uncovertebral DJD and facet arthropathy without significant foraminal stenosis. There is a small spinal cyst in the right neural foramen
- C7-T1 - uncovertebral DJD without significant stenosis.
- Significant straightening of cervical curvature which is probably degenerative. There are disc osteophyte complexes at C5-6 and C6-7, but there is no appreciable significant foraminal central canal, or recess stenosis.
- Small spinal cyst in the right neural foramen at C6-7
What Does All of that Mean?
First off, as my doctor said—my neck sucks. Along with cervical dystonia, I also have a very aggressive and fast moving case of degenerative disc disease. There are bone spurs forming along my cervical column, and I'm also developing cysts in my spine. Because of all this constant irritation, my lymph nodes in that area are also constantly swollen. My neck is essentially collapsing on itself. This completely different disease is causing my flare ups with cervical dystonia to become more intense and occur more often than when it initially set up. The damage to my spine from one disease is causing flare ups of my other disease.
And it sucks.
What Is Cervical Dystonia?
Cervical dystonia is a very rare disease. It only occurs in about 60,000 people in the United States, and affects twice as many women as men. Cervical dystonia can occur at any age, but it most commonly surfaces in the 40-60 year old range. I am only 33. There is no specific race that is affected more than another, it is an equal opportunity disease. I am Native American, Irish, and Danish. It is not hereditary and is generally idiopathic, which means any disease or condition that arises spontaneously or for which the cause is unknown. Cervical dystonia is also known as spasmodic torticollis. I call it Hell. The disease can show symptoms slowly and develop slowly, as mine did, or it can come on aggressively and the symptoms will be aggressive. There is still a lot of research being done on this very rare disease, and as of this writing there is no cure.
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It is not a terminal disease, and once it sets in and peaks—it does not progress. I believe mine is peaking now, having flare ups now twice a month and 3-7 days at a time. However, the good news is that it can also go into remission. There is no timeline on when a remission can occur, only that there are reports of cervical dystonia definitely going into remission with many patients after years of excruciating flare ups. The bad news is that the remissions don't last, and the flare ups will begin again eventually. So far the longest remission that has been reported was a full five years.
I'd like to know...
Signs and Symptoms
I've already told you what was happening with me and how my doctor figured out it was cervical dystonia causing my misery. Here's a list for you to check for if you think you may have cervical dystonia.
- Involuntary muscle spasms that will jerk your head in directions like chin toward shoulder, ear toward shoulder, chin straight up, or chin straight down
- Hand tremors
- pain worsening when changing positions
- muscle knotting, burning sensation in muscles
- pain or spasms worsening with stress or excitement
The effects of this disease can cause depression and anxiety. It can also flare up due to stress and anxiety. Severe cases can cause the person to become debilitated and unable to perform a regular 9-to-5 job. I, personally, am unable to function in the workforce because of flare ups. It is for this reason that I have my own business as a cake artist. I can take off when I have a flare up and no one will fire me.
I'm not going to go into a prognosis, because this isn't a terminal disease. Although at times it does feel like it would be easier if I could just hang it all up and die already. I know, that's very morbid—but it is completely and utterly true. This disease can be misery, and it weighs on you. I can't remember a day I didn't live in pain. And that really sucks.
Treatments for CD include botox injections into the affected muscles, specialized cervical collars, pain medication, muscle relaxers, anti inflammatories, injections, physical therapy, and surgery. I've tried all of these except the botox injections. So far, I've noticed no difference at all. The next step is to give the botox a try. I have another surgery scheduled very soon to help repair my cervical spine, and my doctor has hopes that it will lessen the strain on my spine and help ease the flare ups. It's pretty much an experiment. And at this point, I'm ready for them to cut my head off, replace my spine with a new one, and sew my head back on.
If it would give me relief, I'm down.
Cervical dystonia has made a mess of my life. I went from being able to hold down a job and contribute to my family finances to lying on the couch 6-10 days out of every month because I can't handle the pain. And I am not a weak person.
I'm no longer able to play with my boys every day like I once did, either, and that fact alone is one that keeps me down. I always swore I would be as hands on with my kids as possible, playing with them and taking them on hikes to teach them, being hands on with their sports, and all sorts of things that I can no longer do. Nothing in the world breaks my heart more than to promise my son I will play "horse" with him outside, then suddenly I'm unable to do anything but lie on the couch and cry.
It is a terrible disease, and it makes me hate my body. However, it could always be much worse. I could be struggling with something terminal, as so many are right now. You've always got to try and look on the bright side, even when it seems everything is dark.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Becca Hubbard-Woods (author) from Outside your window. on August 21, 2016:
Thank you so much Camille! It's been a rough go, and one problem I have is that a chiropractor isn't very safe with my discs in the condition they're in. I'm trying a brand new form of therapy after the next surgery - traction therapy. I'm excited about the possibility of some relief! Thanks for reading and letting me know you identify with the struggle. It definitely sucks! Much love! XD
Camille Harris from SF Bay Area on August 21, 2016:
Thanks for sharing. I believe I suffer from the same - at least I know I have a "military neck" and have suffered from episodes of torticollis. The only thing that gives me some relief is regularly visiting the chiropractor. I'm also fortunate enough to have a standing desk at work, which reduces my "hunching."
Best of luck to you in your struggle. Please know that I have an idea of what you're going through - you're not alone!