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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4 Replies to “Treating CRPS enough to have a life”

  1. Good read. I already have a scs — It was 2007 when I got it. So, I think they have been improved. Really the only thing I would improve on is the recharging of the unit in my hip. Pretty aggrivating.
    Also, I’m taking cymbalta and lyrica. For breakthrough pain and flare-ups, I take four tylenol and hope to sleep through as much of it as possible. Wish my dr qould give me lortab or something to take as needed. Should I ask?

    1. Why not? Sleeping through pain is one tactic, but actually being able to suppress it enough to function is not a bad idea.

      It could help to track flare-ups when you wish you had a lortab. I originally used my calendar (I make it easy to do, so I can do it easily.) Then I counted up how often that happened per day or week or month, budgeted an extra 15-20% for seasonal changes and holidays (obvious and unavoidable triggers), and put it into a DOC file with all the numbers laid out nicely. I usually use a table format, which doctors LOVE, with level of function on the left, coded from 1 to 5 (1 being immobilized, 5 being as good as I get, and 3 being the point where I really can’t remember or function much), the middle column is what I use and how much that changes my level of function, and a Comments column on the right to highlight issues or ask for changes.

      I mention that for general info. If I remember rightly, you’ve got a good ongoing relationship with your doctor 🙂 To answer your question … It seems perfectly reasonable to ask for breakthrough meds, and if lortab works for you, that seems like a good one to use.

  2. It is 4:30AM and I am awake trawling through the Internet seeking information to help me survive CRPS. Thank God, I found you and your site. Your posts are not only insightful, and yes anecdotal, but they are packed with helpful and practical info. Thank you, you are a blessing. I am tired and in pain from zero CRSP treatment, but in order to survive I have to research and shift through a daunting pile of Internet detritus to find gold. I have actually been told “to stop researching” by my medicos, the ones who have offered me little help beyond “do range of motion exercises in warm water four times a day.” I can barely get in and out of my bath tub and I can not fill a basin. I would cry, but it takes too much energy. I will read your posts instead.

    1. I’m moved to tears, Elle. How I hope you find real care, soon. Meanwhile, I’ll keep researching, mulling and writing, hoping to help a bit more.

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