INTERVIEW WITH A CRPS SUFFERER

Hello, bloggers. Since tomorrow is the last day of CRPS Awareness Month, I decided to interview a friend and former colleague who suffers from this horrible disease.

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CRPS Ribbon

Hi, Jay and thanks for taking the time to visit my blog today. We’ve known each other a long time, having worked together in EMS, you as the paramedic to my EMT. I know for the past several years you’ve been suffering from Complex Regional Pain Syndrome (CRPS) and since it’s CRPS Awareness Month, I thought it would be good to help educate others about this horrible disease.

What exactly is CRPS?

CRPS, also known as RSD (Reflex Sympathetic Dystrophy) is a progressive neurological disease of the autonomic nervous system and more specifically, the sympathetic nervous system.  The pain is characterized as constant, extremely intense, and out of proportion of the original injury.  It is typically accompanied by swelling, skin changes, extreme sensitivity, and is often very debilitating.  It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of those diagnosed, it spreads to additional areas.  It does not discriminate as it can occur in men, women, and children, although statistics show it occurs more often in women between the ages of 40-60.   It is ranked as the more painful form of chronic pain today by the McGill Pain Index.  It’s more painful than 3rd-degree burns, natural childbirth, amputation of a digit, you name it. Imagine having any of those…..24 hours a day, 7 days a week.  It’s brutal.

Though research has yet to prove WHY it occurs, or what happens in the body to cause it to occur, it generally happens after a knee surgery, or any traumatic event to a limb, back, neck, etc.  It could happen just by stubbing your toe or spraining an ankle.  The reason truly is a mystery.  The manifestation is a nightmare.

Because there are no absolutes with this disease, most people see an average of 5 doctors before diagnosis.  And while early detection and aggressive treatment are key, sometimes it can take years before you’re diagnosed.  If you’re lucky enough to have it caught early, you stand the best chance of remission between 3-5 months of symptom onset.  After that, your best bet is aggressive treatment to hopefully slow the progression.  There have been cases of spontaneous remission, but those cases are few and far between and we’ve learned not to rely on those statistics.

When were you first diagnosed?

I was diagnosed in April of 2014.  I had been injured on the job in May of 2013 and that injury resulted in knee surgery in June 2013.

What was the cause in your case?

The cause in my case was the knee surgery.  About 10 days post op, I complained of severe knee pain, swelling, and color changes in my left leg.  Anyone who knows me knows I have a very high pain tolerance, so for me to complain is significant.  When the surgeon re-evaluated me, he chalked the pain up to my age (I was 41 and his direct quote was, “Jay, we’re not getting any younger.  The older you get, the longer it takes to heal”).  He told me that I could start PT and to go as hard as I wanted to.  Wanting to get back to work as soon as I possibly could, I did just that.  My leg began to turn purple, the pain was outrageous…to the point where it made me vomit, and I didn’t seem to be getting better.  No matter how hard I worked.  I continued to complain but because I was on worker’s comp, the surgeon’s hands were tied as to what he could do and the comp company, not knowing my work ethic and how much my job meant to me, felt like I was just trying to get out of working or was looking for a bigger settlement check.  Obviously, this isn’t something they said to me or anyone else for that matter.  But I believe actions speak louder than words and when you lose your job, your career, are rendered 100% disabled, and STILL, they refuse to pay for treatment, go against judge’s orders, and don’t act until the judge levies sanctions against them, well, what other conclusions can you draw?

Describe what you go through on ‘bad days’.

My bad days….ugh.  LOL. Unfortunately, my bad days far outweigh the good.  There is nothing “positive” about this disease.  The suicide rate is twice the national average because the pain levels are so high, it’s difficult to treat.  Narcotics won’t help as they don’t help with nerve pain.  They just make you not care about it.  That hardly seems productive to me.  So, my bad days.  Well, it’s not pretty.  My arms and legs can turn black.  The pain is so bad I can vomit literally all day.  I’ve been known to lose control of my bowels at the most inopportune times.  Sometimes I can’t eat at all.  Sometimes I can’t feed myself.  Sometimes, I lose my vision and can be completely blind for minutes…to hours.  Because of that, I can no longer drive.  When I can see, often, it’s just shadows and if I go out to a restaurant, my other half generally must read the menu to me depending on the lighting. Sometimes I can’t sleep for days…like, 4-5 days.  That can make me hallucinate.  Exhaustion can do that to you.  I can’t regulate my body temperature and will sometimes sweat profusely for no reason.  I can also pass out spontaneously.  There is no warning.  That’s always fun too.

I understand there are several stages of this disease. Please explain to my followers what stage you are living with and what it does to your body systems.

Some doctors keep it simple and just have a CRPS Type 1 and Type 2.  Others stage it.  The difference between Type 1 and 2 is that Type 1 occurs after a surgery, etc.  Type 2 occurs after a nerve injury that can be pinpointed.  As for stages, they go up to 4 gradually…and that’s too much to go into but it generally ends up working out in the same way as the 2 types.

As for me, I’m considered CRPS Type 1 with systemic manifestations.  Which means it’s spread throughout my body and I have organ involvement.  If we’re talking stages, I am at Stage 4.  There is no 5.  Both definitions basically mean I am not going to get better.  This disease, because it wasn’t caught and then treated in a timely fashion, will one day completely take over my body and cause it to shut down.  We don’t have a time frame for that.  We just know it will happen at some point.  In the meantime, any treatment I have now is working to (hopefully) slow that progression down.

As for body systems, I can’t speak for others as this disease is not “textbook” but I can say that with me, it’s had cardiac effects.  I can go into an SVT (supraventricular tachycardia) for no rhyme or reason.  For that, I take beta blockers as needed to prevent my heart from going into a fatal heart rhythm.  I also am now suffering from kidney disease.  That’s directly related to the CRPS.  Because it’s manifested in my stomach lining and intestines, I usually say that I “rent” my food because, on a bad day, I throw it up or worse.  I have a hard time metabolizing my food.  As I’ve said before, I can pass out for no given reason.  We believe that to be related more to neuro than cardiac but honestly, we just don’t know.  But because of the cardiac effects, I stand a 20-30% chance of not waking up each time I fall asleep.  I’d like to believe I stand a 70-80% chance of waking up instead, as those odds sound better to me!!

What treatment options are there and have any of them worked for you?

Treatment options are few and most considered “experimental.”  Because of that, insurance covers very little in terms of treatment.  For the nerve pain, Neurontin and Lyrica are popular drugs.  Sadly they did very little for me.  Low dose naltrexone has worked for some.  I think the most popular are ketamine infusions.  Whether it be inpatient or out, that’s a treatment that seems to get the most response.  Unfortunately, that’s one of the treatments that’s considered “experimental” and it’s extraordinarily expensive.  Some mortgage their houses for one round.  It’s tough stuff.  Ketamine was known most widely as a horse tranquilizer and it was also called “Special K” in the clubs for its penchant to act as a hallucinogenic.  It is thought that if given at high enough doses, it can “reset” your sympathetic nervous system for a while and help with pain management.  I’ve had both inpatient and outpatient treatment with this drug.  It’s quite dangerous, but the rewards outweigh the risks, I think, when looking at a future living with this disease.  I’ve had the most response from the ketamine than with anything else, but that still is on the minimal side.  We’ll never be pain-free.  EVER.  But if ketamine can reduce my pain from 10 to a 6 for a few months, I’ll do it.  Regardless of risk, I’ll do just about anything to NOT hurt that way that I do.

Where do you go from here?

I’m not sure.  I have a saying that if I can just get to midnight, I’ve got a new chance at a better day.  So, no matter how horrible my days are, I focus on getting to midnight. Midnight/tomorrow offers hope.  That’s my focus.  As for the disease, I don’t know.  We’re still fighting worker’s comp.  The cold weather is terrible for us as it causes pain flares that, honestly, feel like they’re incompatible with life.  Hopefully, in the near future, we’ll sell the house and move to St. Petersburg, Florida.  The weather down there is ideal for people like me.  There’s a specialist that hopefully will be able to help me improve my quality of life.  My fingers are crossed we can make that happen.  In the meantime, I get to midnight.  Every day.  And then I count my blessings that I did.  I give thanks for those who have stuck by me.  And I appreciate all the things I never did before.  For now, that’s where I’m going.  

Thanks again so much for visiting me today, Jay. Much love always, my friend. 

Jamynne Bowles spent the better part of 20 years working in the back of an ambulance first as an EMT, then as a paramedic. It was her absolute dream job until suffering an on the job injury that required minor surgery.

From that surgery, she ended up with Complex Regional Pain Syndrome, a progressive neurological disease for which there is no cure. Totally disabled, she works hard spreading awareness and educating others about a disease very few know anything about.

You can follow her at http://www.facebook.com/jamynne as well as read more about her experiences fighting this disease at http://www.themighty.com. Just insert her name into the search box to find her.

 

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About My Miracle Life

I'm a writer, blogger, avid reader, book reviewer, sub-arachnoid hemorrhage and stroke survivor, moving forward in my recovery and trying to advocate for stroke and brain hemorrhage awareness and prevention. I'm also slowly working towards independence, driving, my first novel, a memoir and a series of short stories. I've been lucky to have a very small network of close friends to guide me; I've been even luckier to have found an online 'family' of sorts to help me through the rough times.
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