In the time since we compiled my medical summary, one symptom in particular has gotten monumentally worse. The symptom is the one of stabbing knife pain in my back. I have permanent knives in four locations. They stab me at an incredibly high frequency. They stab me unbelievably badly when I get into and out of bed. Lying down in bed makes me scream as my body adjusts to a new posture. They stab me every time I lean forward to take a sip of water throughout my day. Every sip. They stab me when I cough. They stab me when I lean or strain in any way. They stab me when I laugh. Every single laugh. They stabbed me when I project my voice. They stab me when I cry. When pain levels are highest, they stab me at the top of every inhale and the bottom of every exhale. They stab me mid sentence as my breath runs out and again when I inhale to keep talking. And the part that is unbelievably, excruciatingly, impossibly torturous, is that they stab me from even the slightest brush of someone's hand or fabric across my middle and upper back where they're located. The hot zone. It is impossible to dress me without shocking stabbing pain. It's impossible to move me. It is absolutely unbearable inside the transfer belt but also when I am carried to and from my bed. But this extremely light touch triggering some of the worst stabbing is just so shockingly bad. Surprises me each time. And then I also get stabbed whenever my arms are attempting to hold their own weight. So anytime my shoulders are hanging loose without my full arm support, I'm getting stabbed. Although at its peak, I feel like I'm being electrocuted and stabbed all over my back. So many of these are inescapable stabs. We are probably realistically at the point of 100 or hundreds of times a day. It is a level 10 pain. If I have full control over the movement, like when I go for a sip of water, if I move in slow enough motion, the stabbing still happens, but it might only reach an 8 on the pain scale. If I'm lucky. I just need to write about this symptom. I guess I just did to some degree. It controls so much of my life and torments me to such a high degree. I do not know the exact etyology of this pain, but I certainly believe it's associated with the spinal instability as well as having some interplay with my shoulders. But my shoulders and arms don't have to be involved at all for it to happen. I would like to understand the most likely mechanism for this torturous pain. (Side note: the pain region has expanded since I had this chat with Chad GPT just last week. It goes further down my back around to the side of my rib cage, and at times, I feel that I'm stabbed straight through from my back through my chest, at the level of my nipples. Stabbing knives. In my breasts. I can also be triggered by moving my left arm now in addition. But I will keep this to the chat that I had last week.)
ChatGPT said:
Carolyn, this is absolutely worthwhile.
When a symptom crosses into the territory of controlling your breathing, movement, clothing, transfers, hydration, laughter, speech — it is no longer just “a symptom.” It becomes a dominant organizing force in daily life.
Likely Mechanism of the “Permanent Knives”
Given your known history (severe EDS, spinal instability, prior tethered cord surgery, neurologic involvement), this pattern strongly suggests a mechanical + neuropathic hybrid pain generator.
Here’s what fits best:
A. Mechanical Micro-Instability Triggering Nerve Irritation
With connective tissue fragility in EDS, spinal segments can:
Shift subtly with posture changes
Translate with breathing
Shear during arm suspension
Compress or tension nerve roots unpredictably
The fact that you are stabbed:
At the top of inhale
At the bottom of exhale
When leaning forward
When coughing
When arms hang
When transitioning in/out of bed
…strongly suggests movement-dependent mechanical irritation of dorsal spinal elements or nerve roots.
Breathing itself causes thoracic spine motion. In instability, even that subtle movement can:
Momentarily tension inflamed nerve roots
Irritate facet joints
Trigger dorsal ramus nerve pain
Create sharp, electric, stabbing neuropathic bursts
This would explain the frequency.
B. Severe Cutaneous / Mechanical Allodynia in a Localized “Hot Zone”
The brushing of fabric or a hand causing unbearable stabbing pain is classic for:
Mechanical allodynia
Central sensitization layered on top of structural injury
Possible dorsal horn hyperexcitability
In other words:
The nerves supplying that region are so sensitized that even light touch is interpreted as a high-intensity threat signal.
Given:
Repeated high-level pain exposure
Ongoing instability
Surgical history
Chronic nerve irritation
It is extremely plausible that this region has become neurologically “primed.”
The shock you describe each time it happens is also consistent with neuropathic firing — it feels electrical, weapon-like, sudden.
C. Arm Suspension Triggering Thoracic/Scapular Instability
When your arms hang unsupported, your shoulder girdle pulls on:
Upper thoracic spine
Scapular stabilizers
Paraspinal musculature
In someone without instability, this is fine.
In someone with ligamentous laxity and spinal vulnerability, that traction can:
Slightly shift vertebral segments
Tension irritated nerve roots
Trigger sharp segmental pain
The fact that the shoulders don’t have to be involved tells us the generator is likely spinal, but the shoulders act as amplifiers.
D. Why It Reaches Level 10
This is consistent with:
Neuropathic pain (sharp, stabbing, electric)
Mechanical nerve impingement
Repeated microtrauma
Central sensitization from chronic severe pain
Neuropathic pain can easily hit 10/10 — especially when:
It is sudden
It is repetitive
It feels inescapable
It interferes with breathing
Pain tied to breathing is uniquely torturous because you cannot avoid breathing.
In Summary — Most Likely Combined Mechanism
Severe spinal instability → repetitive micro-shifting → nerve irritation + dorsal ramus involvement → central sensitization → mechanical allodynia in a defined hot zone.
That combination fully explains:
Hundreds of stabs per day
Triggered by breathing, leaning, coughing
Triggered by light touch
Triggered by arm suspension
Excruciating transfers
Clothing intolerance
High reactivity with posture change
You are not describing vague pain.
You are describing highly characteristic neuropathic-mechanical instability pain.
This is not minor.
This is central.
And you were right to elevate it.
