Pain modalities and treatment

[ketamine kitty]

Pain Modalities

Disclaimer, not a doctor, not medical advice,observations from a long time Pain person.

I?m going to break this into subsections for severalreasons. One of the more enlighteningdiscussions I had with my pain doctor was when she told me I was an SCI,complex, multi-modal extreme pain patient. My very educated response was DUH?? Earlier on another doctor tried to treat me in this manner but I was tooearly in and wanted a cure not some half assed well this might help a bit andthat might help a bit and before you know it?

Do you understand your Pain? Dejerine has posted about Central Pain andhas given true insight into the scourge of CP. My own doc said there is no cure and no adequate treatment. So why do Arndog and some others use opiateswith some measure of success? Why isValium my drug of choice, shared I think by Dejerine and a few others, while wefind opiates useless.

Modalities of pain:

Primarily as a layperson we know Neuropathic andNociceptive Pain, in simple terms nerve and mechanical. If you are in this forum you likely sufferboth and to discriminate and separate them is exceedingly difficult due totheir interaction, or at least seeming interaction and each capable of triggeringthe other.

If you are here you likely suffer a multi-modal complexpain syndrome yourself.

Neuropathic pain seems an all-inclusive category. You can have multiple types of neuro pain, simple, regional, central,etc. It becomes easy for a doc to lumpthem together but we need to analyze our own unique symptomology and write itdown as clearly differentiated as possible, including what you feel, where,when, triggers etc.

E.g. I sit in acid (dysesthesia) , clearly CP. A grain of sand may cause agonizing pain ifstepped on. In a different Neuro modalityif I contract my hamstring it rubs the peroneal/sciatic nerve evoking a typicalsciatic pain from my lumbar down to my big toe. BUT it may also trigger severe spasms in the hamstrings with the damaged nerves evoking a totally different pain in muscles, notjust the severe cramping spasm pain but lancinating pain through the muscles. Worse it can manifest itself in different musclegroups, not the spasmed hamstring muscles, instead violent stabbing through mycalf muscles.

And the ongoing lightning bolts down my sciatic/peronealnerves? No know causality, just somesort of nerve damage, not even sure how this might be categorized, CP,Peripheral Neuropathy??

Nociceptive/mechanical/evokedpain. If you are here you likelyhave an SCI, likely have had surgery (surgeries), broken, crushed, fused, spinethat has been rebuilt. The end result ismechanical nociceptive pain. I had adifficult time explaining evoked to my PT who lumped it in with mechanical, mydifferentiating factor is the chronic back pain vs the severe lancinating painthat will buckle my knees and have me on the ground from just turning a certainway or doing things I know may trigger it, but do anyway, of desire ornecessity. Likely you have similarcomplications.

So why bother with all this. I believe sever chronic pain needs to betreated at each modality. Some can neverbe mitigated such as the CP. Some neuro,by the antidepressants, Clonidine seems to help a bit in my IT pump with someneuro pain, Baclofen is helping manage the spasms , still ramping up but havehad days at a 7-8 rather than the suicidal ideations of continual 10.

If you have not really analyzed your pain I don?t believeyou can help in the search for relief and your input will greatly impact your doctor?smethodology and ability to respond to you. My doctor has stated many times the ability to articulate themodalities, triggers etc. are of tremendous value in her search to help. FWIW I?ve fired dipstick docs who don?t / won?tlisten, hope you do too.

Right now my docs are working sleep, spasms, several nociceptiveissues, and several neuro issues the goal that if each of these individually iseven 25% managed the overall quality of life and ability to deal with the untreatableCP complications will rise. It is working, very slowly. While life stillsucks I can see myself hanging around for a while, a far cry from late 2012when I had put my affairs in order with a termination date Jan 31 2013.

I write this mostly as I see folks desperate with nodirection and without your excellent input the doc?s are shooting in the dark.

Hope this helps some of you who cannot sort through howto even evaluate your pain so you can effectively communicate it and becomeyour own advocate.

Hopefully Dejerine, Arndog and some of the other learnedresources here will correct my errors of ignorance and supplement this.

It would be nice if we could come up with a meaningful sheetrather than the fucking smiley to crying face I have to fill out when I go tothe doc with a body image that I just scribble all over and write FUCK MY LIFE.

Cowboy, I PM?d you did you see it?

Arn, Dej, I wouldn?t be here without your help andsupport.

Warmly,

ket

[dejerine]

Bollefen

That was such a good breakdown of the various modalities of pain which are experienced post SCI.

Might I suggest one refinement. Evoked pain can be seen in any pain so it is not exclusive to nerve injury pain nor to ordinary pain. It means making the pain worse. In nerve injury pain (whether central or peripheral) as Dr. Ron Tasker has pointed out, there is both spontaneous (usually omnipresent) and evoked pain (result of some stimulus, such as light touch, cold etc).

The evoked pain may be evoked as the result of hyperalgesia (which means a heightened evoked response to something which is painful to normal people eg. a pinprick); or from hyperpathia (pain from something which should not be painful, such as light touch). The lightning pains of CP are also said to be part of spontaneous pain, even though they are intermittent. The burning dysesthesia is spontaneous and always present, needing no stimulus.

Evoked is not an inappropriate term for either nociceptive (via normal pain processes) or neuropathic (due to nerve injury) pain.

So a breakdown might be written this way:

I, Neuropathic
A. Central
1. Dysesthetic
a. spontaneous
1. like acid under the skin
a. evocation of spontaneous by light touch


A person could have A1a1 pain as well as A1a1a pain. An English major will tell me I should have started over with capital letters, but I am just giving an example and the dialogue box will not type indents.

You have so much intelligence and so much humanity to offer, it is you who have helped to sustain the rest of us. You are one tough guy and you have the guts to tell it straight, with no sugar coating.

[arndog]

I don't know that there is any real meaningful treatment for any of it let alone one drug that works on this kind of pain and some other drug that works on a different type of neuropathic pain.
Maybe Lyrica and Neurontin, in my case, help with diffuse generalized burning below my injury level - the sizzling that we all live with.
I just posted why I am up at 3 in the morning - what the hell med helps with this? Nothing I know. It wouldn't do a bit of good to talk to my pain management doc about this. He would have no clue what I am talking about nor what to do about it. I am in Reno, NV. Perhaps if I saw some pain management specialist at a Tertiary medical center like Duke, UCSF, Vanderbilt.
Not a very positive note, sorry.
I wish there was something coming out of the drug pipeline that will address this.

[ketamine kitty]

Basically there isn't despite my ramblings above.

The reality
I still sit in acid,
the peroneal / sciatic nerves are still tight about to snap of red hot molten steel, with shards of glass being torn out of me.
Don't touch me,
a grain of sand underfoot can be devastating buckling me with pain,
I've slept once in 12+ years.

the only thing that MIGHT be working is some minor relief of mechanical lumbar pain.
Oh and massive amounts of Baclofen are helping with spasms at the expense of tone, not like great, been up all night with them, have them all day today...

But some here are flummoxed about how to even talk about pain and some have manageable pain modalities so I thought it might be worth the time to write.

But the crux for some of us is Central Pain, no cure, no treatement. To quote Warren Zevon "Let me break it to ya kid, your shit's fucked up"

I go to Beth Israel in NYC Tops, you know how many true CPs they have? don't need a full hand to count them.

My Shit's Fucked Up.

[swh2007]

After 7 years, I'm just now having that grain of sand under the foot/shooting pain thing so I'm glad you mentioned it. I keep looking for glass on the floor and it's not there. Now I get it......

[jody]

good post ket.
iv been diagnosed with central pain but I don't have it. its incorrect.

the others I do have.
Iv used a pain patch to treat pain since 2000. it no longer works the way it used to, and now the withdrawal is constant, and is affecting my autonomic system.

Opiates aren't forever.
at some point, the physical dependency defeats the pain control.

[dejerine]

Bollefen,

You bring up a really good point. So many major centers have not seen very many cases of fully elaborated central pain. Even if they have, not many centers permit the requisite amount of time in the visit that is required for the clinician to begin to understand Central Pain. He is not going to get it from the literature so if he/she is to get it at all, he must get it from listening to the patient, who also needs to be cued with the right questions. There is a circularity of deficit. The doc needs to know a lot to ask the right questions of the patient, but he can only acquire such knowledge by first speaking to the patient.

Most CP patients, who want pain relief NOW, are too sick to be bothered to go into elaborate detail, but since there is no vocabulary, the normal learning experience for the clinician is lost. The patient is there for some relief, not to expand the database of the clinician. So goals conflict.

Since pain is usually incredibly easy for the ordinary pain patient to describe given a chance, the examiner may not press for answers that will help him learn. He will not expect to need to pry, cajole, and insist that the patient stop mourning and start thinking about pain types. The patient is thinking about pain severity, while the doctor is trying to understand pain quality.

Doctors expect even lousy historian patients to be good historians about pain, because they "always" are. If you ask a patient when some digestive symptom started, they may say something impossibly vague, like "right after my daughters wedding" (whenever that was), but the same patient, asked about pain may say around 3:30 in the afternoon, right here on my left side, on Jan 6th, this year. CP patients cannot be this precise, so if the clinician is not careful, he may mistake the vagueness for not very severe pain.

At one time I was interviewing CP subjects, and you would be surprised how many had never separated out their dysesthetic burning from other pains, such as the completely different lightning pains or the kinesthetic muscle pains, or even bladder pain. They assumed I could fill in the blanks without their telling me. They just kept emphasizing how severe their pain was. Unless I had known about the TYPES of CP pains, I would never had gotten a halfway decent history. They thought if I knew how bad off they were, I would stop asking nitpicking details and just give them something RIGHT NOW for the pain. It takes mental energy to be specific and the severe case of CP doesn't have any mental energy left.

UCSF seemed pretty enlightened on CP, but my clinician had only seen about five fully developed CP cases. He was, for example, not clear that the reason I wear abbreviated clothing was due to the pain from light touch. He was up to speed on some other features and most of all, he listened and accepted what I told him. For that I thank him since it came at a time when I really needed it. When UCSF combined with Mt. Zion's the pain center was moved from a nice office to an area downtown which was run down. My doc had gone into full time research, which is where we need him, but I wondered if the downgraded facility was a factor.

My experience is that rehab centers have seen a lot of bona fide central pain (my doc there had seen 22 cases) and it is not mysterious to them, whereas garden variety neurologists know nothing about it. Oddly, the rehab doctors where I was knew all about CP but the neurosurgeons did not. They seemed not in communication with each other. Maybe the neurologists working the pain center did not want to offend the neurosurgeons by telling them they weren't helping CP. I just don't know.

Your neurosurgeon sounds very very good. I think many pain centers have seen a good deal of post SCI pain, and I also note that the features of cauda equina seem familiar to them, but it is unnerving how many of them seem unaware of what they are dealing with in full blown Central Pain. This is one reason I prefer not to refer to it as neuropathic pain, since those with peripheral nerve injury I talk to, while suffering, have not had the life impact of those with CP. not even close.

It always seemed obvious if someone with paralysis or other motor loss chose to focus entirely on pain that is should be evident that Central Pain must be really, really bad if worse than paralysis, but somehow the examiners don't seem to recognize the significance. Paralysis is compensable, while pain is generally not. So we cannot be accused of being malingerers. And since opiates do not help, I cannot be accused of being a drug seeker; yet somehow I get fit into that folder I suspect. It is a very tough disease to have and an extremely difficult disease to get care for.


We need:

1) adequate time for the examination and history--often one entire day for the first visit. It takes about ten minutes to identify areas of decreased sensation with Von Frey hairs or filaments, and several hours for full neurologic pain exam with respect to the pain. A workup should eventually ALWAYS include some sort of counseling or psychiatric session for the FAMILY, to help them adjust to the patient, not to see if the patient is crazy. Chronic severe pain typically makes people irrational but this is not crazy.

2) a template of questions for the doc including pain types, percentage of body surface involved, severity of each pain, constant vs. intermittent, emotional impact, evoking stimuli, durability, any visceral components, muscle components, hperalgesic components, hyperpathic components, what relieves EACH pain and what BRINGS ON each pain. Only in this way can the doc fashion meds for pain. What helps musculoskeletal pain cannot reasonably be expected to help burning dysesthesia.

3) Patients to realize they MUST be specific about each pain and not just refer to "my pain". Docs realize the patients is not there about someone else's pain. Speaking of "my pain" says nothing. Talking of my "spontaneous dysesthetic burning on my distal extremities" is much more helpful, but only an educated, guided patient can do this. Of course, if the sitting patient has pants on, he may actually be experiencing SPONTANEOUS burning on the backs of his legs and EVOKED burning on the front, where the fabric touches.