A CONTRIBUTION FROM A SUBJECT WITH CENTRAL PAIN.
It is with some reluctance I commit this to writing. Fifteen years ago I would dismiss me as mad.
As someone who never minded pain, I am utterly and profoundly humbled, and as you know deal daily with suicidal ideations.
I have no confidence in Prialt but it is the last stop so head into it with open eyes and an eye on what is happening to me, and undergo cognitive evaluations weekly through 2 personal friends who are shrinks.
I have taken several days that I might review, edit out exagerations due to immediate circumstance and to be sure to try to include all.
I am (was) intelligent and have a science (EE and Physics) background in addition to the Intelligence work and as a scientist I cannot reconcile any of this other than a total malfunction of a complex system with cascading events and triggers.
Upon reading it seem the histrionics of insanity, but having walked away from narcotics and virtually every medication I could tolerate without extreme side effects as they have had NO effect what so ever, I can categorize myself as either insane or this is real, and most unfortunately this is real.
Apologies again and I hope this may help someone somehow.
N.B. At this point we insert a sidebar to assist in understanding the remainder of this person’s description:
This is a submission from a person with central pain. It reminds us of the severity of the condition.
Note that this person has both spontaneous (constant) and evoked (elicited usually by light touch or temperature change, but sometimes the evoking stimulus cannot be identified) Your doctor should be made aware of which pains are continual or ominipresent, which can be evoked, and which are spontaneously intermittent.
Some of the central pains convey discriminative information (location, nature etc) while others are too vague to describe. There is no vernacular and not even any adequate clinical vocabulary for central pain dysesthetic burning, so the person typically borrows from the language of ordinary pain or invents terms. This borrowing makes the listener THINK they understand, but the dysesthesias are not like any other sensation. By comparison, a mix of blue and yellow can produce green color, but green color is not adequately described by saying well, it is blue and it is green. MIXES need a new name. Unfortunately, the name given to the mix of central pain burning is dysesthesia, a vague term if there ever was one.
The clinician can gain a little understanding of Central Pain by injecting themselves under the skin with capsaicin, which hits the TRPV1 receptors, (known to be related to thermal sensation) but dysesthesia is a MIX of sensations, which mixed together yield something which no human experiences, unless there is central pain.
Acid is painful. This is not rocket science. Painonline was one of the first to propose that the metabolites of eicosanoids, ie fatty acids derived from Omega 3 fats, were behind central pain. Further research has shown that the specific fatty acids are derivatives of linoleic acid. When these are oxidized, they become highly irritating to pain nerves, particularly those associated with thermal sensation.
Acids cause a burning sensation. This burning sensation can be and is perceived in central pain in a heightened fashion. The core sensation of central pain has long been described as a burning, “LIKE ACID under the skin”. The primary acids involved are called oxidized linoleic acid metabolites. The two more prominent are 9-HODE and 13 HODE. This neuroacidity is known as neuroinflammation.
Now that some understanding of the pathophysiology is known, clinicians should stop acting confused about what the central pain patient is saying. He is saying that he is being burned as if acid were under the skin, which really means in the nerves which lie just under the skin.
Why this burning can get to the brain is probably NOT related to normal nerve transmission. It may be a chemical chain reaction whereby acid production under the skin CHEMICALLY induces a similar acidity in second and third order neurons, EVEN IF those nerves are incapable of reaching the brain with normal sensory messages. We find the acids in the synapse at each level. We also find the glia which surround neurons multiplying and driving the acid production via growth factors, such as brain derived neurotrophic factor (BDNF) in what seems to be related to some sort of attempted repair function.
While this terminology is a bit mysterious to the average public, fatty acid metabolism is part and parcel of the biochemical education of EVERY physician. Why it has taken them this long to begin to put pieces of the puzzle together is almost certainly related to the fact physicians have assumed they know pain, and what the CP patient is saying does not match. Hence, many have relegated it to something like back pain, or even some form of malingering. Central Pain is way more severe than ordinary neuropathy. This real severity nevertheless has sometimes been attributed to some sort of weakness or even drug seeking on the part of Central Pain patients. After all, the Central Pain patient has nothing visible going on, so surely they must be exaggerating, goes the mistaken presumption. There is plenty going on, but fatty acids are not visible to the eye.
Patients with central pain need extensive personal and family counseling as well as whatever medical care can be provided, which is limited since conventional pain meds seem to have little or no effect on this type of nerve injury pain.
S. Weir Mitchell, who first described pain of central origin during the Civil War, marveled that his bravest captain was struck in the neck with a ball and that the resulting burning to light touch was so severe that it reduced him to the disposition of the “most nervous girl”. This person is emotionally wrought and his words might remind us of Mitchell’s description of his formerly brave captain.
For your own sake in description and to help educate our caregivers, it is helpful to categorize your central pains into specific groups. The following guidelines may be used.
Dr. David Bowsher described these as bizarre burning pains combined with a paradoxical component of COLD. This definition is more easily elicited from those who have recently acquired central pain, since with time, the sensation simply IS, and it is rather amorphous, except as to the burning.
As in all verbal choices aimed at central pain, even Dr. Bowsher’s words are an approximation. The essential aspect of dysesthetic pains is that they are unlike what would be experienced in normal pain. The subject has NEVER felt the dysesthetic sensations prior to acquiring central pain. The only thing that can approximate any dysesthetic sensation is the injection of capsaicin under the skin, and even there it reaches only the burning component and does not evoke the other dysesthetic sensations.
The proposed reason is that pain, which normally is highly discriminated, conveying a very large amount of information to the brain, presumably because pain is necessary to prevent further injury. This system is deranged with the dis-integration of signal in nerve injury, so that a MIX of sensations, unfamiliar in nature, results. We call this mix dysesthetic, but the most prominent aspect of it is most frequently described as having thermal qualities, “like acid just under the skin” (Note that this author uses similar terminology”)
Despite the predominant burning, one must also consider what it is that elicits or exacerbates the pain. Elicitations of greater pain through various stimuli are called “EVOCATIONS” and these are nearly always said to be blasts of cold air, also light touch, particularly occlusive light touch (such as laying a newspaper across the skin.
Mitchell’s test is to use light touch on a burning area. If the pain is from injury to the PERIPHERAL nervous system, the evoked pain will be instantaneous. In pain of CENTRAL origin, ie Central Pain, there is a slight latency, sometimes of only a few seconds, but typically around twenty seconds before the evocation really gets going.
Carl Saab, from UT and Yale, has elsewhere at painonline contributed an article on his research that confirms this same CP latency in the roof nuclei of the cerebellum (the vermis). Oddly, many pain specialists seem unaware of this simple test. It is not clear whether the current tendency to lump central pain with peripheral neuropathic pain is due to mental laziness in learning the clinical patterns, or whether the caregivers simply cannot sort out and understand the confusing verbal descriptors which patients use, often combining their central pain with the musculoskeletal (normal) pain from the original injury and surgical alteration of the motion segments of the spine. It raises the question of whether Central Pain is not really knowable to anyone who does not have it.
However, we lament the failure by many to differentiate the two conditions, since fully elaborated Central Pain is terrible and well beyond the impact of peripheral nerve injury in one limited area. (All pain is bad and so peripheral neuropathy is not to be denigrated by making this statement–if nothing else the AREA of Central Pain is typically large, while peripheral neuropathy is usually in smaller areas, cf. the impact of small burns to large burned areas). Certainly if the clinician begins mentally to regard and treat central pain in the same fashion as vastly less severe diabetic neuropathy, the patient is not well served. The DSM book, by the American Psychiatric Association classifies mental disorders, but still impacts how pain is viewed generally.
There are rumors the upcoming DSM5 diagnostic edition may lump all nerve injury pain into one category. If this is true, we expect to see them differentiated once again in the future as more is learned about the two separate conditions. Recent research suggests that BOTH Central Pain and Peripheral Neuropathy result in upregulation of TRPV1 receptors, but these are also upregulated in response to ordinary painful heat, so this is clearly not the whole story of Central Pain.
Like normal pain, these pains convey discriminative information, such as distinct location, radiation etc. and they feel like normal pain. This author refers to these pains as “electric pains”.
In the literature these have been differentiated into kinesthetic dysesthesia (bizarre burning pains associated with movement of muscle loading) and isometric dysesthesia (pains not associated with movement, also sometimes compared to confinement cramps). It has been theorized that muscle pains result from dysfunction of the gamma motor system, which is part of the muscle spindle, as it passes to the brain.
Any normal musculoskeletal pain such as could be expected from vertebro/ligamentous injury or surgical changes in the motion segments of the spinal apparatus are NOT to be included in this category. Dysesthetic kinesthesia can be severe and the literature contain reports of patients who are either totally or nearly paralyzed by such pains even though they have an intact motor unit. The majority of such patients are incomplete quadriparetics, it would appear.
Personal Central Pain Description continued
I am almost embarrassed to write this and do so upon request, that others may learn something. I would not believe this if someone had told this to me before I had it, and with decades of martial art and competitive fighting, pain has historically been an inconvenience and manageable. I cry from pain several times daily, leaks out, again embarrassing.
Personal: Competitive Full contact fighter Martial Arts, Multiple Black Belts several disciplines, Football, Wrestling, Powerlifting, Combat veteran
Fused C2-3 unknown origin possible congenital, possible minor fracture fused while healing
Laminectomy T ? between shoulder blades
Advanced Degenerative Disc Disease L1-2 very advanced
Spinal Stenosis, some areas worse than others
Chronic continual spasms nipples down, IT baclofen pump inserted Oct 2012
Boston Scientific Dorsal Spinal Stim Paddle leads inserted top down ~ T6, Totally ineffective, contributed to spasms out of operation for ~ 7 years, remains in place
I will attempt to describe location, frequency, intensity, type/sensation.
In all cases where temperature is cited for causality, cold is much worse than heat
In all cases where touch is cited for causality light touch is more likely to evoke the highest pain response, while stronger touch is more likely to evoke spasm attacks.
Pain is from nipples down.
Nipples through Abdomen front, approximately 80% of the time, aching indeterminate origin cannot pinpoint exact location, no causality,
occasional burning, frequent pins and needles moderate severity, unknown causality, can be
evoked by change in temperature, brushing of clothing, manageable typically 5-6 on pain scale
Spasms from severe to “vibrating pulsing” currently severity has been reduced with IT Baclofen
Back from C down to navel region in an inverted Russian cross, the major cross at the lumbar, the minor across my shoulder blades 100% of the time, no known causality cannot evoke
Spinal column pain 5-10 feels arthritic in nature along spinal column severe ache pain 8-10, and severe sharp lancinating pain
approximately 4-6 inches across again impossible to identify exact place seems approximately ¼ – ½ inch below the skin but not in the spinal column, severe ache 7-9
electric shocks, daily and frequently 9-10, sear directly down the spinal column/cord often right
down to toes but start high T .
Lancinating jolts (like being shot based on personal experience) pain 9-10
These are more prominent from low T down
Burning, Pins and needles 5-8, unknown causality can be evoked by heat, cold, rough clothing
Subject to severe spasm despite baclofen, although baclofen has helped
Navel region down bi laterally sometimes a bit worse on right side, right may be a 10 pain level left only 8-9 just enough less to differentiate
Acid dip,like being dipped in battery acid where it slowly and horribly burns through the skin until neutralized by a high PH application after which while no longer physically burning
It feels it is, one of the very worst but fortunately only 4-5 times a week
Electric shocks, daily and frequently 9-10, sear directly down the sciatic, peroneal often right
down to toes but start high
Lancinating jolts (like being shot based on personal experience) pain 9-10
These are more prominent from low T down
Crawling fire ants 100% of the time 8-10
Pins and needles severe 100% of the time 8-10
Burning, severe 8-10 100% of the time, if only an 8 putting on pants or a breeze or sitting or
touching evoke full response to 10.
Around house wear only boxers or extremely loose soft pajama bottoms whether inside or outNerves, seems like the entire Sciatic nerve is being ripped out of me from my big toe through mylumbar. Stretching to breaking point pain 9-10 Red hot and covered with shards of glass, in
addition to being pulled out, being twisted around and around. Agonizing, bi-laterally near
Pain Shell (my description) an envelope of pain ~ ¼ -1/2 inch below the skin envelops me from foot to
groin excruciating agony, vomit, experience sensory disorientation. Cannot distinguish conversation vision blurs, tunnel no visual discrimination unaware of surroundings lose timeline observers indicate these episodes last from 15 minutes to several hours,
Residual pain feels like I have been physically beaten and remains for days. [see kinesthetic dysesthesia above] This may be the very worst, were it possible I would likely commit suicide during these. Pain 13 on a 1-10 scale.unimaginable, indescribable, I scream sometimes til my throat bleeds (I am unaware of this) scares anyone who has seen it, Pain doc only observed something similar in a thalmic stroke victim who suicide out, feet move to a Babinski pose, not a hard spasm can be pushed back to normal (painful) but then moves back to the previous position. When this happens it always includes all of the other described
Leg Sensation. On the rare low pain day 6-7 my legs and leg muscles feel like they are filled with hot bubbling seltzer water. [see kinesthetic dysesthesia above]
Legs subject to severe spasms daily despite baclofen (although reduced from pre IT Pump)
Penis feels like it is being squeezed/crushed sometimes or bursting from the inside out at others
Left testicle aches throbs and vibrates (not actually vibrate but has that sensation) near continual, pain level low but very annoying maybe 4-6
Frenum extreme pain, unknown causality, 20-30 times a week time ranges from minutes to a day. Again hard to “locate” exactly but the frenum is not that big
Perenium extreme pain, typically evoked by bowel movement 8-10. Lasts minutes to hours
Butt feels like a drill is being driven through my ass bones (where I sit, the nerve plexus there) always there sitting exacerbates it always 8-10
no anal pain, occasional burning
Feet, stepping on a nearly imperceptible pebble will evoke severe local pain 3-10 minutes later that lasts for hours
Much of the pain cannot be precisely pinpointed, bizarre to me but…
EMG tests invalidate diabetic neuropathy (extremely well controlled insulin dependent diabetic. Only 1 A1C in excess of 6 in more than 16-17 years)
Recent extensive neuro workup for any organic complications, none indicated
Zero pain relief from anything, tried the anti-anxiety, every narcotic, marijuana, Ma (oriental) Meditation (still practice it), acupuncture.
Baclofen has helped a great deal with spasms and pain associated with the spasms themselves, except the extreme ones. prior to the IT baclofen running a finger lightly up the back of my leg caused severe spasms, lifting my foot backwards had same effect, crawling backward had same effect etc. All spasms reduced in frequency by 50% minor spasms have markedly reduced severity; the “screamers” are unchanged