For nearly 11 years I have had a neurological chronic pain condition which is known as mysterious, under-researched, difficult to treat, incurable, lacking in treatment options, and also like Chronic Migraine, many say my chronic pain condition is also “rare” when in fact neither actually should be.
Before I had been diagnosed with Complex Regional Pain Syndrome in 2004 (known as one of the most painful chronic disorders) I had never even heard of it. Neither had my family, friends, and many doctors and nurses have never heard of CRPS (RSD) either. However, 4 years ago when my journey with Chronic Migraine began, I learned that something as common as a headache could be even more mysterious and surprisingly harder to treat. I have been surviving a host of head difficulties: spinal headaches (Cerebro-spinal fluid imbalance), Cluster Headaches, Trigeminal Neuralgia (facial nerve pain) and Chronic Migraine which equals CONSTANT intense, debilitating head pain for the past 4 years straight.
But everyone knows what a migraine is. I could even buy pills at CVS for migraines and headaches, right? So why are there fewer medical options for my head pain than for a widely unheard of, “mysterious” and complex chronic pain condition like CRPS? It is baffling! This is debilitating chronic pain of the brain and doctors seem to have fewer resources and fewer answers to questions as well. It’s “ONLY a migraine” seems to be the overwhelming attitude of society and physicians, and it is because of a lack of awareness. I was part of that unaware group before 4 years ago…before my life and brain changed.
While chronic pain crippled me and affected my life and body in every way, most days I found some ways to function using walking aids like crutches or a wheel chair. In contrast, this pain in my head shuts down my thoughts, my eyes, memory, speech, my ears, balance, and just moving my arm or inhaling too deeply sends an electric jolt through my brain. My entire being is stunted due to my head pain. I would never ever want to minimize the horrors that chronic pain sufferers endure, but I had many more treatment options as a chronic pain sufferer compared to a headache disorder sufferer. In 11 years, I still have not reached the end of all options as a CRPS patient, but within a few months I had tried everything available for this horrible head pain.
Did you know that the NIH claims that Chronic Migraine and Cluster Headaches are 2 of the MOST DISABLING CONDITIONS in the U.S.? Thirty seven million Americans suffer from migraines; 2-3 million are chronic.
When I was diagnosed with chronic pain, there were so many tests, scans, physical therapy, both medical and alternative resources to exhaust, invasive injections, surgical options, non-invasive therapies, and tons of different kinds of medications. Even though the benefits were minimal, and most things I tried didn’t help at all, there were options available. And options feel a lot like HOPE when you are barely hanging on from the kind of pain CRPS causes. I feel as though it has taken so little time to expend the resources accessible for Migraine Disease, and even all of the headache doctors don’t seem very informed about what to do next, or how to answer what seem like simple questions. As I communicate with others with chronic migraine and other headache disorders, I have found that others feel the same about how their headache doctors treat their serious symptoms.
This is chronic pain of the brain, the part which controls everything in the body! It is WHO I AM. I am basically shut down for operation for most of the past 4 years. Be your own advocate? Try advocating for yourself when you can hardly speak, move, or open your eyes. When the room is spinning every time you move your head, a bird chirping can send you into a “suicide headache,” you dread something as simple as flushing the toilet, swallowing your water, or even blinking your eyes the pain is so unbearable.
Your senses are held prisoner by chronic pain of the brain- the part of you that registers all of the pain signals in your body, and now has become nothing but pain itself. This is not good enough. There are too many of us, and we deserve so much better than a life whispering in the dark.
If you are surviving Chronic Migraine, chronic pain, or other painful debilitating neurological conditions, you are not alone. February 29th is Rare Disease Day. Please share to help spread awareness. Thank you for visiting and for commenting.
In the U.S., more than 37 mill. people suffer from migraines. Studies suggest 13% of U.S. adults have migraines, and 2-3 mill. migraine sufferers are chronic.
Almost 5 million in the U.S. get at least one migraine attack per month, while more than 11 mill. people are moderately to severely disabled due to migraines.
Migraines cost the U.S. more than 31 Billion per year in healthcare
Only $19 million goes into researching migraine disorders
~Find me at @aBodyofHope on Twitter
www.Facebook.com/Living.with.RSD for a positive chronic pain support group welcoming all types of chronic pain conditions
After many years of pain I then came on a time of suffering so unforgiving, it appeared my body would not make it out alive. But finally, I feel an awakening is upon me. In some ways, I believe my brain is renewing itself.
The putrid smell and taste of physical rottenness dissipated. The illness and ongoing pain have not left me by any means whatsoever, yet over this past year I have felt a change occurring inside of my mind. Maybe a transformation.
I did not realize how large a gap I had put between myself and my body these past years. I suppose the traumas experienced under medical care contributed to my drifting. My complete and sudden loss of physical independence surely didn’t help. However, there was no crueler attacker than my own body. To endure this unending physical pain and other debilitating maladies, I must have cut so many ties between me and my lump of person. To live under a physical betrayal so strong you realize no sense of personal willpower can guide the outcome- was an enormous blow. The only way to survive it was to drift beyond my physical self.
~Free My Self~
After the damage to my brain.
After disengaging from my great betrayer: my body.
After the pain went from unspeakable to so immeasurable,
I could no longer speak.
After there were doctors who were unafraid
to use uninvited hands on my body in its weakened state.
After family members had to dress and clean my flesh.
Yes, “my self” liberated from “my body.”
It had to, you see?
This recent awakening began with feeling present again. And new creative thoughts and senses followed. More than my only thoughts, “just breathe, drink, eat.” After years of survival alone, something new surfaced, like a tiny green sprout pushing its way through heavy concrete.
For the past few years, eating has been an uncomfortable challenge and chore. Although I have little appetite, I notice the smell of foods with a new curiosity. And my tastes have changed. I favor different foods and savor scents, flavors and textures I never enjoyed before.
All of my life I have been a sort of “Tom Boy.” Collecting bugs and rocks as a child, preferring to play outside with boys, spending far less time thinking of my appearance than most girls and women it has seemed. The only lotions or perfumes I own have been gifts. But coming into this renewal of myself, I have become acutely aware of my skin. For so long I didn’t have any connection to my flesh-I have even detested it in some ways. The betrayal, the dying, stinking body I could feel slipping away from this world. But it fought. It held onto life! And now, I dab a scented lotion onto my living body in appreciation. I inhale the mild fragrance all day knowing I am the bearer of this pleasant lingering smell.
When did my eyes become attracted to jewel tones like fuchsia and purple? I long to shop for clothes and home decor some day. What!? This is unlike me altogether. Then, as I practice my handwriting, it appears much more feminine than before (my scribble used to be a family joke). Reuniting with my body has brought about a womanly change in me. And I do feel different. Aware of new things. So much has occurred; I don’t think I can go ever back to being that person I used to be. I may as well transform into someone new.
My brain is making connections and is attempting to make friends with my flesh once again. Obviously, there are some new connections, as well. It is challenging to make friends with a body that constantly bites back, but some friendships are difficult yet still rewarding, right? I’m learning a lot about Neuroplasticity and how much the brain renews itself. I hope in time I will be making even more transformations. Who knows what other discoveries I will make along the way and what new connections I might find.
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This entry has been included in The Spoonie Daily online magazine!