Acute pain, chronic brain, and naming this ratfink disease


Complex Regional Pain Syndrome is the latest in a long line of names for this disease. Some of the older names have been recast to cover aspects of it, or versions of it, or special cases, and of course there are overpaid people who argue about it intensely. I’m going to go out on a limb and list a few sometime-names, sorta-names, and related-names to go on with:

  • Complex Regional Pain Syndrome
    Until recently, there were two subtypes: Type 1 had no visible nerve damage, Type 2 did. However, with chronic CRPS, there is extensive and pervasive nerve damage, and it makes no difference in treatment after the acute stage, so this subtyping is widely considered irrelevant.
  • Sudeck’s atrophy
    No longer used; atrophy of bone and muscle is really symptomatic, and not always present.
  • Causalgia
    No longer used, except as an old name for CRPS type 2.
  • Reflex Sympathetic Dystrophy
    Used by old-timers and sometimes for CRPS type 1, although CRPS-1 is not necessarily maintained by the sympathetic nervous system.
  • Algodystrophy
    More often used in Europe; also, neuroalgodystrophy. Problematic because it implies that this is the result of autosuggestion. I know I could not have made this up in a million years; moreover, extensive analyses of the literature show that there is simply no truth to that.
  • Neurodystrophy
    More often used in Europe. It’s a perfectly good name, but not the one that the IISP paid a bunch of specialists to come up with)
  • Reflex neurovascular dystrophy
    RND; no longer used, because it only addresses vascular changes, not neurology or systemic issues.
  • Shoulder-hand syndrome
    No longer used, except to refer to upper-body chronic neuropathic pain while dodging a CRPS diagnosis.
  • Peripheral trophoneurosis
    Good one, eh? No longer used, both because it may spread out of the periphery, and it’s not about neurosis. See “algodystrophy” above.

For more on comparative naming and different nations’ approaches over the years, check out the RSD Canada site.

A certain amount of acute CRPS does clear up (or go into remission) before it’s even diagnosed. Since it can take years to get diagnosed, there’s not a good way of figuring out what those numbers might be. Even after diagnosis, acute CRPS can go into full remission and never show up again, before it becomes the ground-in form of trouble I call chronic CRPS.

In its chronic form, CRPS is a disease of dysregulation — of everything being thrown off balance. Our efforts to push back against any given part of that are quite likely to throw our systems off balance in some other way.

The body doesn’t balance simply, like a seesaw; it dances in 4-D homeostasis, which I’ve explained here. It’s a bit more like this:
Trapeze_artists_trimmed
Now imagine pushing one of those trapeze bars the wrong way.

Adjustments need to be carefully incremental in order not to distort the system further, but often need to be done quickly because the situation is so horrible to be in.

It’s a conundrum.
Sketch of brain, with bits falling off and popping out, and a bandaid over the worst
Personally, I’d like to have different names for acute and chronic CRPS. Here’s why:

Acute CRPS is all about the pain, with swelling and dystonia and circulatory high-jinks playing second fiddle. With acute CRPS, good results are consistently found with vitamin C (500 mg twice or three times daily is the usual dose range) and also with activity plus pain control, both quite aggressive.

Apart from that, therapies vary widely as to what will work with whom, but chances of remission in the first few months are very good, and in the first few years are still comparatively good.

After that, the whole situation changes.

With chronic CRPS, you realize that you have to find a way to live around the pain because so many other things are going wrong, life itself has to take center stage at some point, and pain has to take its turn in the wings.

Once the brain plasticity has gotten going, it’s no longer just a pain disease, but a disease of dysregulation, as the signals change and the body’s responses to the signals change and the brain’s ability to even recognize appropriate responses to temperature, circulation demands, sensation, perception, and so forth, all slide downhill.
Bosch_painting_of_Hell_(582x800)
In acute CRPS, having the word “pain” in the name is absolutely appropriate, because that must be addressed to let the brain reboot and get back to normal.

In chronic CRPS, pain often remains a huge part of it, but the central brain-changes are what creates and sustains the disease state. Pain is, clinically speaking, a ghastly distraction.

It’s a key symptom, a good guide (since muscle weakness, sweat and circulatory changes all tend to track to it at least some of the time), but it is not the driving force of the disease. The brain changes are.
poison_skull
Pain is terribly seductive to researchers, because people who don’t have chronic CRPS think they “get it” about pain (hah!) and, since that’s easier to relate to than the word “complex,” let alone the hopelessly misunderstood terms “regional” and “syndrome”, what they focus on is the pain.

The real problem is the brain, not the pain.

In my private internal world of reason and order, chronic CRPS is actually known as Complex Neuro-plastic Dysregulation, CND.

My eyes make words out of letter groups, usually just by adding a vowel. What comes to mind for me is, if you don’t win at CR[a]PS, you get C[a]ND.
craps-tshirt-front
Makes all kinds of sense to me 🙂

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3 Replies to “Acute pain, chronic brain, and naming this ratfink disease”

  1. I’ve been living (and I use the term loosely) with CRPS Type 2 for 11 years now. Like most I guess, I was not properly diagnosed for many years after the injury, and have been dealing with ever increasing pain and slowly decreasing use and strength every sense.
    Like most people with this syndrome, over the years I’ve tried everything from anti seizure medications and anti depressants, to sympathetic blocks, to acupuncture, to opiates and NSAIDs, to physical therapy, and everything else under the sun, with very little or no success.. Recently I read about a treatment called Prolotherapy, which looks promising according to the information I’ve read on it. I was wondering if you have heard of it or know of anyone who has tried it, and had any success with it..??
    Please let me know, as l’m sure like most people in this situation, I’m TIRED OF THE UNENDING PAIN and other problems this presents.
    Thank you in advance for your reply.
    Sincerely,
    Steve Freeman

    1. It looks like I didn’t reply, Steve, and I meant to. Sorry…

      Prolotherapy is one of those things that works great when it works at all. It’s definitely individual-dependent. The tissue irritation, so helpful to those who don’t have spastic vessels, can do a number on us. But not everyone.

      If your CRPS is more peripherally maintained, then it might help, assuming the irritation does what it’s supposed to and the tissue response doesn’t trigger autonomic dysfunction, with circulatory weirdness and the whole color/swelling/pain circus that comes with it.

      If your CRPS is more centrally maintained, which is kind of a hallmark of the ongoing disease, then I don’t see how treating the area with anything, let alone an irritant, would be any good. It does nothing for the central part of the nervous system.

      I consider myself lucky that the usual pain meds nearly killed me, and I had to go the diet modification/supplementation route right away. Eliminating things that irritate my central nervous system, and supplementing with things that help repair damaged nerves and fragile tissues, was absolutely essential. If i hadn’t done that, I wouldn’t have lived long enough to do anything else.

      At the risk of starting a shooting war here, the MCS and neuro research hounds I’m close to, indicate that the most common neuro allergens in the diet are gluten (wheat, rye, barley, spelt, triticale, “natural flavorings”; oats have a similar molecule, so YMMV), corn (especially corn fractions like HFCS and “natural flavorings”), fresh dairy (which an incompetent gut like mine breaks down into a molecule a lot like gluten), MSG (often wheat derived), phosphoric acid (found in most dark sodas), and benzene (anything with the syllable “benz” in it — read labels, or better yet, don’t eat things that come in packages, which usually have BHA or BHT added to the packaging.)

      Common neuro allergens in the environment include petrochemical products (photo chemicals, printing chemicals, gasoline, many cleaning products) and most chemical scents, most notoriously the line called Axe, which may trigger psychotic breaks in vulnerable people, according to disturbing reports.

      A couple of techniques do address central sensitization:

      – Calmare, which is a subtle, varied, electric signal that rescrambles the pain impulses and has given many CRPSers outstanding relief.

      – Ketamine, which is an anesthetic that sort of reboots the brain. It must be administered by a competent physician well-trained in ketamine administration for CRPS, as it’s still a dangerous drug, but with the right protocol and the right matching of patient to protocol, it can work wonders.

      – Spinal cord stimulators. These are surgically placed and can be highly problematic, but if they’re the right thing for you, they can give you your life back in a large degree. They are electrodes shoved right into your spine, so if your pain is mediated mostly in the brain, not so good. If it’s still at the spinal root, excellent.

      As for supplementation, which you don’t need doctors to do … Good, health-food-store supplements are essential. Your body is burning through nutrients desperately fast all the time. It can’t keep up. We are way beyond healthy diet, with all the pain and the other cellular and metabolic insults of CRPS.

      The nerve cells and muscle cells are the biggest suppliers and the biggest consumers of antioxidants. As muscle cells degenerate and nerve cells take a beating, they need more and more but can produce less and less. The math catches up to us after awhile and then it takes time for the supplementation to penetrate enough of the starved tissue around the gut to work its way to our CNS, but from my experience, it was well worth it! The time was going to pass anyway, and I was better at the end of it.

      Neuro-oriented antioxidants include SAMe (a type of methionine), N-acetylceisteine (NAC), and co-q 10.

      Vitamins A, D, E, K, and moderate amounts of C are important, especially the D3 — much bone loss and the concomitant pain could likely be avoided if we all had our D levels checked and then supplemented accordingly.
      (I’ve been told that C can become pro-oxidative in a sickly environment, so I have to look into that.)
      B vitamins are absolutely crucial to neuro and other cellular repair, so a good B complex is important.

      There are supplements that can provide precursors to neurotransmitters, and I find they roughly double the effectiveness of my SSRI and SNRI, keeping me in the low-middle range of doses instead of me getting overdosed to near dying as I once was. Phenylalanine is a precursor for dopamine and norepinephrine, and the d,l form has been found to be genuinely helpful in reducing nerve pain for many. It also helps me stay less confused (dopamine, perhaps.) 5-HTP is widely known as a serotonin precursor, as is tryptophan. Both can help with sleep, too. I do better with 5-HTP.

      There are a lot of brands, and there’s a lot of behind-the-scenes business ugliness behind the brands as the whole “natural everything” movement creates the possibility of money. I’ve watched the circus for awhile, and at this point, there are just a few brands I can recommend as still being good, consistent, and generally digestible:

      Jarrow (great antioxidants)
      NOW (inexpensive and very good; I always get my 5-htp from them)
      RAW Vitamin Code (a Garden of Life line of food-based products, excellent; I take half the recommended dose of the multis, and boy do they help)
      Twinlabs (my second choice for multis and neurotransmitter supplements; widely available)
      Solgar (pricier than Twinlabs, but much the same; widely available)
      My fallback brand is Life Extension, which is still excellent.

      I get mine for wholesale at vitacost.com (fast delivery, but don’t carry Jarrow), luckyvitamin.com, or occasionally for a bit more at Amazon if the others are out of what I need.

      It’s a hideously complex disease, and in cases like ours where conventional medicine has almost completely failed, we have to take charge of that complexity and redesign our lives in order to have something worth living. We really do have to change or die, and it is a surprisingly hard choice.

      Meanwhile, I hope you have found your miracle, or something to keep you going at least. Again, I’m sorry for my delay in answering (rough winter) and I wish you all the best.

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