Treating CRPS enough to have a life

Someone asked a question on social media that led to my doing a brain-dump on the basic format of current treatment for CRPS. This will take on a more formal form, but right now, for quick reference, here it is.

Like many others, this person has narcotics as a primary form of pain control. Increasing the dose increases function, but past a certain point, is that a good idea?

And, more importantly, the biggest question was, what does it really take to be able to have a life again?

 

Common-sense note on narcotics

Firstly, it is GREAT to have something that works. I know plenty about narcotics from a physiological and neurological and even a gastrointestinal standpoint, so I know the arguments for and against — but, when all is said and done, it’s great to have the option and it’s great to have something that works for you.

Keep what works! Unless and until you really can replace it with something better. (Clinicians, in their overbearing way, can be pretty cold about this.)

In the end, if you need to increase the dose, then increase the dose, but given how our bodies adapt and the disease shifts over time, it might be good to keep higher narcotic doses in your back pocket for breakthrough pain and flares, and see about the other meds that treat nerve pain specifically, support (in some cases) your neurology so you can function better and be more stable, and leave some slack in your body’s narcotics “budget” for other times.

Doctors should be able to support the idea that you should be able to have a life, and happy to help you figure it out. Good pain specialists have this as a specific goal which they try to help us reach as much as possible for as long as possible.

Read tamingthebeast.ca or elsewhere on this blog for loads of tips on nutrition, homeopathics, herbs, and other at-home strategies. This is just about the stuff your doc can do for you.

I mentally break these into 6 categories, 3 of oral meds and 3 of other, more interventional stuff:

MEDS

  • Neurochemical support: Mostly antidepressant-category meds, from tricyclics to SSRIs to SNRIs. SNRIs have the significant bonus of potentially stabilizing a faulty ANS.
  • Transmission shifters: Mostly anti-seizure meds, Lyrica and Neurontin. Ketamine certainly shifts nerve signal transmission, and the protocols for giving it are getting better and more specific. Technically it’s an NMDA receptor antagonist, but it affects opiate and MAO receptors too.
  • Calcium “wranglers”: Calcium channel blockers, bisphosphonates.

Basic principles of medication

  • Remember, all meds have side effects. There is no free ride; sorry!
  • Most of our meds can affect judgment, memory, and perception. Ask a relative, housemate or friend to check your brainpower and personality, to see if there are effects you’re not aware of.
  • Avoid polypharmacy, or too many meds, because it’s a great way to create a neurochemical mess. I stop at 3 different ongoing meds, since I can’t tell what’s causing problems if I take more. I also have 3 as-needed meds, which I rarely use, unless the side-effects of the pain/nausea/wheezing are worse than the side-effects of the meds.
  • Last but not least, med is spelled M.E.D. which means Minimum Effective Dose. Both adjectives are equally important. It must be effective, or why are you taking it? It must be the smallest dose that really works well, because otherwise you’re dealing with the same issues mentioned in the previous points, and they get a lot worse with overmedication.

Keep in communication with your doctors about your meds. If they’re savvy, they’ll work with you to optimize your medication profile for best functioning with fewest problems.

INTERVENTIONS

  • Injections and implants: spinal root blocks, prolotherapy, spinal cord stimulators, botox injections, spinal baclofen infusions, implanted drug dispensers.
  • Zaps and rads: TENS (electric counter-stim blocks the nerve pain), TCM (electro-magnetically stimulates and remaps certain parts of our brain that support the disease), Calmare (a more complex electrical technology that retrains the pain signal so it eventually doesn’t restart.)
  • Retraining, rebraining: Multi-Disciplinary Functional Restoration/Rehab is the gold standard for treatment. Most of these programs, but not all, require participants to be narcotic-free. The puritanism I can do without, frankly, but the whole-person approach, and the enormous mental toolkit you come away with, is absolutely life-changing.PT, OT, counseling, and learning about relevant subjects from pain mechanisms to nutritional effects on pain and function to communicating effectively with those around you so everyone can do more with less effort, is simply tremendous. It used to be a shoo-in for US citizens because it got people back to work so effectively, but in the industry overall it’s more profitable to keep us sick, so now it’s harder (but still possible) to get that paid for.You have to have determination and some mental flexibility to get admitted into a program, because it’s hard work, but if you find a program that agrees with you, then it could be the single biggest change in your life.

Every time something goes under your skin, your body has a shocky/inflammatory response. It may not be noticeable, but if it is, be ready to manage it.

If you get an invasive procedure, like implants or injections, then use one of the vitamin C protocols to help ward off flares and exacerbations: 500 mg 2 to 3 times daily, for 1 to 2 weeks before the procedure and 2 to 3 months afterwards.

Now what?

Talk over these different options with your doctor, if you haven’t already — increasing your current meds, using supplemental med support, trying technologies and interventions, risks and benefits.

Also, sadly, it’s important to discuss the realities of funding and insurance coverage, so that you can develop contingency plans to follow in case your hoped-for option doesn’t get approved right away.

Always leave yourself a way forward — that’s a good strategy 🙂

There is a lot that can be done, and most of us cobble together a few different things that work a bit so that, together, they add up to enough to let us … have a life 🙂

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Un Crossed

Note – For legal reasons, this article is explicitly labeled an opinion piece. Quotes are used with prior permission of the author.

I’ve written of bereavement, suicide, the fact that CRPS is not imaginary (the whole point of this blog), and the true mortality rate of CRPS.

Now it has all come together.

Cross Y. was a friend of mine. He wore his heart on his sleeve — there was no deception about him, no malingering, no lying, no selfishness. Selfishness was something he needed more of, and tried to aspire to, because he forgot his own needs in the face of others’. His kind and loving heart poured forth upon his CRPS kindred and those he loved, often in scintillatingly original and muscular words.

He was injured at work. You’ve seen the news about corruption in New Jersey. Add to that the corruption of the Worker’s Comp system, and try to imagine for one minute what that might be like.

July 8, 2013
The truth will set me free,
Kill your dreams,
have nightmares for the rest of your days,
Welcome to New Jersey,
we stand our ground,
unite and become one sound,

The truth will set me free,
technology,
paper trial was the beginning,
soon the end,
your dark tunnel will remain,
Yes this once holy man,
once believed,
now a fucked up memory,
many joined,
happily crucified,
only one will remain,
your future is in vain,
your lies you cannot hide,
you may run,
change your name,
DNA will remain.

The truth will set me free,
Kill your dreams,
have nightmares for the rest of your days,
Welcome to New Jersey,
we stand our ground,
unite and become one sound.

Cross Y 7/6/13 1.21pm

He was a good-looking young Middle Eastern man, so of course, the New Jersey cops figured he was dirty from the get-go.
Cross solo
Then his brother, who didn’t believe he had this disease, became a cop, and things got worse still.

I watched his family dynamics transform as his marriage with a green-card seeker fell apart, then his beloved family started to fail him, and then he spent the best part of a year fighting to survive in an increasingly hostile and impossible hail of abuse, predation, invasion, and brutality.

The system failed him. His lawyer failed him. His family failed him. The original newspaper articles, based on interviews with his family, trivialize and brutalize still further the brightest mystic-poet I’ve ever known.

I’m grieved. More than that, I’m furious.

I had to watch as his extraordinary resilience was pushed and pushed and pushed until every strand of rubber broke.

I had to watch as his stumbling command of English prose was used to throw away the meaning behind his words. Judges and doctors alike could hardly be bothered to listen, and certainly couldn’t be bothered to believe him. Those of us who knew him had to watch as his posts wove between intelligent determination and raging despair, as time after time after time he was thrown back from what properly belonged to him.

His wife stole $30,000 of disability checks. His wife dumped him as soon as her immigration status was assured. His wife pushed him down off his weak leg.

Guess who went to jail? It wasn’t his wife. Try to imagine cold, sharp steel cuffs snapping tightly on CRPS wrists. You can’t. The world isn’t supposed to be large enough to hold that much pain.

August 6, 2013
The color of my eyes have become

the mountain I cannot climb,
the west brings the rainy days,
the east brings the heat,
So I wait,
I’ll give you my night,
I’ll give you my site,
I’ll give you my last breath,

The color of my eyes have become

the mountain I cannot climb,
Realities exist,
Unwinding occurs,
Petals unfolding,
Protecting what’s remaining,
Adapting each day,
Earth is distributing,
New sign,
New rhythm for humanity,
Being Bold,
Voice your feelings,

Full moon of greatness,
Hidden lights reflecting,
Fire resurrecting,
Slumbering beliefs,
Illusions of the underground,
Transformation of natural field,

The color of my eyes have become

the mountain I cannot climb.

9.42am 8/6/13 Lost soul

His brother’s police pals broke into his room (or were let in by his parents), stole his thumb drive, plowed through his poetry and his belongings, took his personal belongings, hacked his hard drive and his accounts. When he said he was going to install a spycam for evidence, his parents got him involuntarily committed to a public psychiatric hospital in New Jersey. They did not treat his CRPS, which was, after all, all in his head. They treated delusions that didn’t exist and a paranoia that was a perfectly rational response to his ghastly situation.

He got in line for emergency housing, but the wait list was at least 6 months long — for emergency housing. A combination of Governor Christie and Hurricane Sandy saw to that. The emergency housing and homeless shelters in New Jersey have been utterly gutted.

Three weeks ago, his father attacked and strangled him at a barbecue, in front of others. He posted a picture of himself afterward, with a bleeding bruise under one eye and big red welts around his neck, with the distinctive engorged look around the eye-bones (remember this is a former Emergency nurse writing this.)

His mother stood by and watched.

Someone called the police.

The partygoers disappeared.

His mother told the police that her husband had not attacked Cross, but that Cross had attacked her — with a knife.

Guess who got the handcuffs…

In private, she later apologized, and said she’d write a statement retracting the police report and her statements behind the psychiatric report.

She reneged.

He was living with people who were actively trying to destroy him. His work was being invaded and stolen. His life was in danger. Not even his dog’s life was safe.
Cross and his dog Leo
He had a sign posted in the rear window of his car: “We burn until there is a cure for RSD/CRPS.”

With perfect logic, he burned his car, before jumping to his death in the most beautiful part of the state. Of such indelibly poetic actions are myths made.

For him, there was no cure.

July 7, 2013
They Murdered me, I never

committed Suicide….

This disease is not imaginary. He was not crazy. He was perilously sane. He was a warm and loving soul with a shining gift of a mind, trapped in a fatally tightening spiral.

All he is now is a tragically truncated memory. What’s left is what we can scrape together of his work from our online conversations.

They keep saying he died of suicide. That’s not true. He died of torture: CRPS, institutional murder, and child abuse.

I. Am. Furious.

Cross, however, is finally at peace.

Reaching the Universe

Silence the past,
Silence the worries,
Silence the outside,
Silence the future,
Silence the self,
Silence the noise,
Silence the people,
Silence the voices,
Everything has left,
Faith in the now moment,
Faith that I am present to myself,
You are stripped,
You are Free,
You are Pure.
You are reaching the universe.

– Cross Y

Rest in peace, my darling, shining brother.

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