Rock stars

As many physicians have noted, treating chronic pain is peculiarly frustrating. Therefore, treating a pain condition as subtle, complex and intransigent as CRPS must be heartbreaking — though it’s never as bad as having it.

Don’t get me wrong
If you say hello and I take a ride
Upon a sea where the mystic moon
Is playing havoc with the tide

Most of us live in countries where there are practical limits on who we can see for care. Since there are few CRPS experts to start with, this tends to put us in tight spots.

So, meeting a new doctor, as many of us have said privately, is a bit like being a bride in an arranged marriage in a backward society*: you have no idea how you’ll get along, but this person is not only going to have a significant role in defining your life for the foreseeable future, but can torture and even kill you without any fear of the law.

14 year old bride with lowered head and sad, helpless expression, standing next to an elderly man who peers at her as if she were a new car he was looking over.

It sounds dramatic, but that’s the bottom line. Think about it for a minute…

For one thing, nobody likes being in so vulnerable a position. For another, we’ve all paid the price for some practitioner’s ignorance or intransigence, somewhere along the way. The fears are not theoretical; they’re real and appropriate.

Suddenly the thunder showers everywhere
Who can explain the thunder and rain
But there’s something in the air

Add to that the fact that chronic CRPS tends to hot-wire the fight-or-flight mechanism, and you have to realize that the doctor is facing a situation that requires about a million times more tact and respect than they ever learned in medical school.

Don’t get me wrong
If I’m acting so distracted

And then there’s me.

I used to be an RN, so I can use med-speak fluently and, more to the point, I’ve got the background to understand the scientific material I read when it’s time to explore a new facet of this condition.

I was dealing with a full-bore case of ADD due to the mechanical and chemical damage of chronic CRPS. At the time, I wasn’t sure what to make of my psychiatrist, Dr. Todd Hutton. He’s so quiet that I simply couldn’t get a bead on how much attention he was really paying to what I was saying.

I was beginning to suspect that he was at least awake, which is a huge bonus in my book… But I had to have my duckies in a row, just in case.

Don’t get me wrong
If I split like light refracted
I’m only off to wander
Across a moonlit mile

Everything about CRPS goes off in different directions, so studying it is like working with refractions.

I studied up on the nature of the brain oddities that characterize ADD.
Figured out where they overlap with the brain damage caused by chronic CRPS.
Sketch of brain, with bits falling off and popping out, and a bandaid over the worst
Then it was the neurochemistry.


I have the neurochemistry of CRPS pretty well nailed, and found that, again, the overlaps with ADD were astounding.

How much of that awful, crippling fog we call “pain brain” is a treatable form of acquired ADD?

Do we really have to live like that?

I might be great tomorrow
But hopeless yesterday

I’m not so sure any more.

Then I looked at treatment modalities for ADD.


The cognitive-behavioral stuff — like structuring your day, having contingency plans, staying in charge of your emotions, and creating ways to check yourself and to take care of yourself when things go wahooni-shaped — are pretty much identical, though CRPS adds a lot of material about pacing, communicating about functional and pain levels, and managing physical limits.

The pharmaceutical stuff has some interesting overlaps, too.


Aside from narcotic pain control (which isn’t much good to many of us), treatment for CRPS neurochemistry tends to focus on serotonin, norepinephrine (noradrenaline), and dopamine; treatment for ADD neurochemistry tends to focus on epinephrine (adrenaline) and dopamine.

More overlap, or is that just a coincidence? Hah! No such thing, when we’re treating the brain.

So, after traversing my “moonlit (or candlelit) mile” of research, I showed up at the psychiatrist’s office with the following info:

  •  It’s probably related to the CRPS. (Nod.)
  •  It’s probably treatable. (Slightly qualified nod.)
  •  I can’t have Adderall, et alia, because my heart is dicky enough as it is. (Firm nod.)
  •  I could face Ritalin, et alia, but I’m already on Savella, which also boosts dopamine. (He shrugged and said, “Same molecule, different location.”)

After a bit more backing and forthing, he said, “How about Provigil?”

I’d seen a friend get hooked on it, so I didn’t leap out of my seat, but we talked it over. His reasoning was faultless. (Something I almost never say.)

More than awake, he was really engaged with my case. So I took the leap of faith and said I’d try it.


He said he’d supply me with samples of Nuvigil (a longer-acting form) since the maker no longer supplies samples of Provigil. (Pharma companies only provide samples of what they still have under patent. They’re in it for the money, remember…)

Don’t get me wrong

If I come and go like fashion

I had the singular pleasure of going in for my follow-up, dressed professionally for a change, and reporting that:

+ I had enough energy to get outside and move around nearly every day. This means laundry gets done, there’s proper food in the house, and I can get some of that so-necessary exercise.

+ I had enough focus to put together a settlement offer, which the insurance company accepted. (WOOT!)

+ I could change focus at need.

+ I was driving better, thinking strategically and more able to pay attention to what was going on around me at high speed.

+ I could sleep better, because I’d been properly awake and engaged during the day. (OMG!)

– My anxiety was no worse, but when it did kick in, it was harder to get it to chill. That was one drawback, but not a major one.

– Nuvigil tends to build up in my system, until suddenly I can’t sleep at all. It took about 5 days to clear it after that. So now I take half a tablet (that is, about 75 mg) every other day. That works quite well.

+ It’s not perfect — it’s not like being well — but I’m so much closer to being myself that I can actually think about what to wear again. (I used to be kind of a fashion plate, in the intersection of classic, practical, and colorful, with a dash of steampunk.)


I told him, “Love and the relationships I have make life bearable. But being able to think, and be productive, and learn things, and get some work done, THAT’s what makes my life worth living. This is giving me my life back. I’m really grateful.”

If I hadn’t grown up in New England (land of the unspoken), I might have missed the slight lengthening of his spine, the slight lifting of his head, the slight brightening of his face, the tiniest lift of a smile.

For once in my life, a doctor of mine got to feel like a rock star.

It might be unbelievable
But let’s not say so long
It might just be fantastic

I got into the car and drove away on a shiny September afternoon in Pasadena.

On the radio, Chrissie Hynde was belting out,

Don’t get me wrong
If I’m looking kind of dazzled

And it put the seal on everything.

For a moment, I tried to stifle the beaming joy that shot through me. Then sanity intervened.


What I wanted to do was pull over, slap on a headset, and dance on the glittering lawn in front of City Hall, arms wide and the sun sparkling through my starry lashes.

I wasn’t sure the police would understand, though.

Instead, I danced in my car, grinning fit to split my head, bouncing my red SUV to the Pretenders.

Drawing smiles even in LA traffic.

Sometimes, the only right thing to do is dance.

Big grinning woman in spectacular Hawaiian ceremonial dress dancing with her arms
Photo: Joanna Poe in Honolulu


Here’s the whole song. At first, I thought the visual story, with its false leads, dead ends, and triumphant ending, was distracting — then I thought about it for a second… 🙂

* Common sense note: obviously, not all societies that practice arranged marriage are backward. I know too many couples who have an excellent partnership and tons of love between them, who were picked out for each other by their nearest and dearest. It’s not arranged marriage that’s the problem, but those situations where there’s a lack of choice and utter helplessness of one partner. That’s what’s backward.

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7 Replies to “Rock stars”

  1. !Wonderful post! I practically did some wigglebumchairdancing for you myself, reading this… we do have to celebrate these rare, delicious successes. I’m so glad. 🙂

  2. ps I love the care and thoughtfulness of your writing (as in your common sense note) just as much as I love the technical info delightfully, honestly, and skillfully story-told. You are a Shiny, Shiny Star.

  3. Finally, maybe a light at the end of the tunnel for my husband. He’s currently using Ritalin, but only every once in awhile. We tried it every day and his depression got bad, so it’s a once in awhile thing .Will talk to his Dr and see what he thinks, Thanks!

    1. Dr. Hutton and I spoke at length about the importance of balancing the neurotransmitters. If your husband has a serotonin-deficient form of depression, then the Ritalin could well make things worse by making the gap between the levels of dopamine and serotonin even wider. A serotonin reuptake inhibitor might be a huge help to him, if that is the case. Then there will be something to balance the dopamine with.

      As I told Dr. Hutton, I’m on an SSRI (sertraline) and an SNRI (Savella) and that managed my pain and depression; but the addition of Provigil was like adding a piece to the puzzle that I didn’t realize was missing.

      I loathe polypharmacy, and here I am taking 3 psychoactive meds. As my pain psychologist/brain retrainer Dr. Faye Weinstein says, it’s temporary, and gives me the opportunity to put my practices in place so I have a healthier brain, and can taper down or eliminate meds as my underlying structures and chemistry improve.

      Everything changes 🙂 I hope things change for the better for your husband.

  4. Wow very interesting information. I have CRPS Type II but, was diagnosed with ADD long before I developed the CRPS. So it’s worth mentioning that your story (as well as you explaination and my own personal knowledges about the brains involvement in both diagnosis) makes me wonder how possible it is that, because of the already present brain differences causing the ADD aren’t the likely reasons I was predispositioned to develop CRPS to begin with. Definitely has to be more than a coincidence.

    I’ve taken Aderral for several years now and, even with it, I find it hard to fight off the drowsiness caused by my other regularly taken to manage my pain daily. So, I can only imagine what a hot mess I’d be if I wasn’t taking it.

    Thank you for your story as, bringing awareness, is key to helping more and more CRPS patients get the proper medical treatment to help manage their pain.

    1. Interesting train of thought, Rhonda. My first thought is that it isn’t likely to have triggered the CRPS, but, once the CRPS became chronic, might have hastened the process. I could be wrong, of course. I respect your sense of your own body. I used to have very mild ADD, but it was just a matter of being quick in class and needing to have several things going on at once. In my case, I’d say the CRPS kicked the ADD right into the stratosphere.

      The science on CRPS is evolving pretty rapidly. How it starts is, as far as I can tell, substantially different from how it continues in the chronic stage. There seem to be issues about immune weirdness at the cellular level, both in the local tissues and in the central nervous system, which relate to the triggering of CRPS.

      Of course, not everyone with the genetic tweaks behind that immune weirdness develop CRPS after injury — it’s all still pretty vague. Immune triggers are very fashionable in science right now.

      These brain changes typically take years to evolve in chronic CRPS. Lucky you, you got a head start… argh. Of course, that means that your treatment team is already on top of it, which puts you ahead of the game in another sense.

      That med-induced drowsiness is a real cuss. I had much trouble and no benefit with narcotics, but the SSRI/SNRI combo has been great for me. Bonus: no drowsiness, at medium doses.

      Given how all meds tend to suck up nutrients, it might not be a bad idea to increase your B vitamins and antioxidants, if you don’t already. The B vitamins are wonderful for weariness and cellular support. Vitamin C (500 mg at a time) is widely used in the CRPS community, along with A/D/E/K and “parent” antioxidants like co-Q 10 and (for those who can afford it) glutathione. There have been tons of arcane but intelligent studies done on the value of antioxidants in CRPS and related diseases (fibro, mito, MS, etc.) and vitamin D tends to run very low in chronic diseases.

      Since the liver has to do a lot of processing (called ‘phosphorylation’), it’s not a bad idea to supplement phosphorus. My first surgeon recommended this, and I found it made me feel a bit less mucky. I was still taking narcotics post-op. (I use lecithin granules because they’re a cheap and useful source, and have a mild butter-ish flavor that works in shakes or soup or salad.) Just make sure to take it at a different meal than calcium, or it’ll block the calcium.

      I tend to ramble about nutrition. It’s been huge for me.

      Awareness is key, indeed. One reason why I keep writing 🙂

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