A Personal Experience of Central Pain

Constantly, the medical world fails to appreciate the severity of Central Pain. It is therefore necessary to periodically post input from patients to distance elaborated central pain from other forms of neuropathic pain.

 

Central pain is the most severe pain state known to man. Extensive counseling of the subject and family are needed in addition to what medical care can be rendered.

We thank this individual for sharing the account of what central pain has meant.

Note that this individual was very physically sturdy and shrugged off pain in younger years. As S. Weir Mitchell described one of his patients, who was their bravest captain who developed the attributes of the most nervous girl, this person is struggling with mental feelings.

It is also worth noting that there is BOTH spontaneous and evoked pain. There is also burning and pain which fails to display any discriminative information, as well as lancinating “electric” pains which are VERY discriminative and convey information as to location and can be described.

The dysesthetic burning (non discriminative) cannot be well described as it is an unfamiliar agony, “like acid under the skin” but poorly localized, ie not pinpoint.

Dysesthesias have no vocabulary in any language because only those with nerve injury can feel such pain. Attempting to describe them causes the person to borrow words from normal (NOCICEPTIVE) pain. This borrowing or invention misleads the listener into thinking they understand. The clinician cannot understand, but can gain some understanding by injecting themselves with capsaicin under the skin (see prior post on Dr. House).

However, such an injection causes ONLY the burning and real central pain is a mix of sensations which never appears in normal life. A single injection is also in one single spot and cannot convey the mental anguish when entire levels of the body are involved.

This person also has pain in the muscles and the pain does not spare the ano-genital regions. Most would agree that pain in that area is demoralizing and often is degrading to describe.

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Beginning of submission:

It is with some reluctance I commit this to writing. 15 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 seems like 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.

Central Pain Descriptions

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.

Relevant History
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
FusedL3-4-5,
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 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,l ike 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 out

Nerves, seems like the entire Sciatic nerve is being ripped out of me from my big toe through my
lumbar. 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 continual

 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. 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 thalamic 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 

phenomena

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.

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

Perineum 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

Observations
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

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