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Until a few weeks ago I had never even heard of Rare Disease Day, but something caught my eye on the internet and a series of clicks later I confirmed that yes, what I suffer from is one of those approximately 6,000 rare diseases. In the U.S. a disease or disorder is defined as “rare” if it affects fewer than 200,000 people at any given time.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Please join me as I do my part.

My story begins with my dog running at high speeds and me stepping into her path. She knocked me down and I immediately knew I was not okay. My fibula had broken near the ankle and I had surgery two days later to stabilize it. But instead of improving, the pain in my foot continued to get worse. There was nothing normal about this pain and the slightest touch was excruciating. I kept insisting something was wrong and that it wasn’t “anxiety” which doctors initially believed. It took well over two months to get my diagnosis.

Chronic Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy or RSD, is a chronic pain condition that affects approximately 1 in 4,000 people who have sustained some sort of trauma to a limb. It’s rare enough where some of my healthcare providers had never encountered a case before me.

In a nutshell the nerves in my foot keep acting as if there’s been some recent and unacceptable trauma – a malfunction to the “fight or flight” response of the sympathetic nervous system. The misfiring signals begin locally, but if it goes on long enough the limbic portion of the brain takes the whole thing over. It’s much harder to treat when it gets to the brain. Mostly what’s discussed in the medical world about this condition is just how much is unknown and how little is understood.

It ranks as the most painful condition on the McGill Pain Scale. lists RSD as #2 of "Six Crazy Diseases” (but only lists five).

For me CRPS has meant scores of injections in my foot, four Lumbar Sympathetic Blocks with more to come, hours of physical therapy, several sessions of acupuncture, daily opiates, a variety of topical concoctions, and the future possibility of a spinal-cord stimulator. I’ve been seen by podiatrists, neurologists, psychiatrists, psychologists, pain specialists and anesthesiologists; had 2nd opinions, 3rd opinions, too many opinions frankly, as often there seems to be little agreement on a course of action.

I’ve had to navigate a cumbersome HMO and travel unnecessary distances for the most basic of treatments. I’ve been on waiting lists for months to begin some of the therapies prescribed by my pain doctor. I’ve reached my deductible two years running and already well on my way to a third. I’m sure I’ve been considered a difficult patient and yet I’m forced to demand appropriate attention again and again.

Don't get me wrong. I do appreciate the health insurance I have through my husband's job. Our HMO is considered to be one of the best in the country. And I am so very grateful for some of my doctors, including the surgeon who was there at the beginning and always makes time for me.

It will be two years in May.

I can’t imagine any condition that would affect me more personally. To start, I hate feet. A lot. Second, the go-to medications for CRPS are exactly the kinds of things I’ve sworn I would never, ever take again. Next, the pain gets worse when I walk. My whole life I’ve preferred to go by foot – I’ve meandered many cities and backpacked a lot of mountains. There’s no other way I’d rather go but nowadays I’m not getting very far. I also have an extreme sensitivity to vibrations that makes riding in any vehicle painful and going to amplified shows and events nearly intolerable.  

We’re selling my beloved 1969 VW Bug because I can no longer drive with a clutch. I wear fleece socks because anything with elastic is unbearable. I’m unable to wear regular shoes so when I go out I slip on Birkenstocks and discretely slip one off at every possible chance. I’ve used crutches enough to know I prefer the forearm style. I’m on my 5th temporary disabled-person parking placard in a state that only allows six.

Sometimes when you look at my foot you wouldn’t know much of anything was wrong. Although there are observable signs of CRPS, right now for me it’s mostly the symptoms. If that doesn’t make sense, understand pain is a symptom – a physician can’t directly see your pain – while swelling is an observable sign. Chronic Pain is often called an “invisible disease” for this very reason.

There are psychiatric conditions that can be easily confused with CRPS. And to be honest I think all of this pain and weirdness, the fight-or-flight of it, how personal it all seems to be, combined with a frustrating health-care system and a lack of any real understanding or control over the future is making me feel a little crazy. Which, of course, exacerbates the pain.

And what is my prognosis for this rare, invisible and crazy disease?  There’s really no way to know. It could completely go into remission, and then maybe return several years later with the slightest of injury. It could spread up my leg (and is already well on its way) or to other limbs. The pain itself could become disabling or the associated contractures I’ve experienced could leave my foot permanently deformed. Since there is no way of knowing I try to hope for the best while at the same time keeping an eye out for the worst. But saying this makes me sound more optimistic than I really am.

Thank you for reading my story, it feels good to be heard. I’d be honored to answer any questions you might have. And since I’ve yet to discover a silver lining or some inspirational insight, I’ve decided to leave you with a little irony: The dog that knocked me down was born and bred, but failed to become, a service dog – specifically to help people with mobility issues.

11:28 AM PT: My husband thought it might be nice to note that I still love my dog and don’t blame her a bit. I also don’t blame him for calling out a warning to me, which led me to step directly in the dog’s path. Stuff happens.

Once again this community humbles me. Please continue share your own stories in the comments. It is easy to loose perspective even though I am fully aware that everything could be so much worse. I am not terminal. I have health insurance. I have a terrific husband, wonderful kids and people with whom to share my story.

Thank you all.

Originally posted to lavaleslie on Fri Feb 28, 2014 at 04:00 AM PST.

Also republished by KosAbility and Community Spotlight.

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