Explaining My Pain

Explaining the pain I live with to someone with no prior knowledge of my medical conditions:

Due to one medical condition being so severe (MCAS), I have been unable to access treatment for my other conditions for over a decade now. Which has allowed this entire process to go uninterrupted and untreated, including no access to pain meds or procedures or any type of medical assistance, including being housebound.

I have a severe form of the connective tissue disorder called Ehlers–Danlos Syndrome that has caused major instability in my spine. Because the spine isn’t able to support the body normally, nerves are constantly irritated or compressed, which creates **very intense** nerve pain and makes even light touch extremely painful. Severe spinal instability and neurologic involvement disrupted normal muscle control and forced my muscles into constant emergency compensation, which eventually became unsustainable, so muscles began to fail, approaching a paralyzed state, which has led to progressive loss of joint support and structural breakdown in many joints. You can now pop a joint out of the socket with a light touch. On top of that, I also have inflammatory arthritis, which adds ongoing inflammation and further damage. The combination of these problems is why my pain levels are extremely high and why both touch and movement are so difficult. There is a state of central sensitization.

Chat GPT's first attempt at describing pain severity and going into mechanisms a bit: 

When I say I’m in severe pain, it isn’t like normal aches or stiffness that healthy people get in the morning. It isn't even comparable to the moderate levels of chronic pain and achiness I experienced most of my life, nor typical arthritis associated with aging, nor isolated injuries someone may have experienced as a healthy person or even an ill person. Nor what most people with chronic illness deal with, as I lived with that for decades. It's not average chronic pain at this point. That's not trying to diminish anyone else's pain. Simply emphasize the severity of my current pain levels and the many contributing factors.

My pain comes from damaged and unstable nerves and joints. It’s closer to the feeling of hitting your “funny bone” extremely hard—sharp electric nerve pain—but happening repeatedly and lasting much longer. On top of that, my nervous system is sensitized, which means the pain signals are amplified.

So when you hear me screaming while I’m trying to pee or move my arms, that’s not an overreaction to discomfort. It’s because the nerves are firing intense pain signals that I cannot control.

Healthy people usually have pain that comes and goes and improves with rest. My pain doesn’t work that way. It doesn’t stop, and many movements make it worse because of the underlying injuries.

When I describe something as a 10 out of 10 pain, I’m describing the level of nerve pain my body is actually experiencing, not exaggerating normal soreness.

Me:

I was frustrated with this response for a couple reasons, so I explained them and got further clarifications. 

Chat GPT:

People assume the 0–10 pain scale is universal, but in reality it’s anchored to their own worst experience. But most people have never experienced the degree of pain that I experience daily. I had never experienced it before, so my pain scale has had to adjust accordingly.

Healthy people assume pain spikes but then fades. Or an injury that heals. Or morning achiness that wears off. Chronic nerve and instability pain that never turns off is very hard for them to picture. I experience this pain during explosive times, like standing and attempting to use unsupported arms, but I also have ongoing pain that never shuts off. My baseline is much higher than people would probably guess. Because I am so used to it that I don't show obvious signs of it when I am supposedly at rest. But don't mistake a blank expression for relaxation or pain relief.

For me, the pain scale is different because my body has severe daily nerve pain and joint instability. My shoulders partially slide out of the socket and pull on my spine and nerves when my arms aren’t supported. That creates sharp nerve pain, not muscle soreness. This also happens to many of my joints.

So when you hear me scream or react strongly, it isn’t because I’m reacting to achiness. Nor am I being dramatic. It’s because my body is experiencing intense nerve pain and structural instability at the same time.

That’s actually nerve pain from instability, not soreness. This is dislocation-level pain, not muscle pain. A shoulder dislocation is a major injury that normally requires intense medical intervention and a prolonged healing process. But my body never gets a chance to heal. The next injury is likely just hours or minutes away. And I don't get to rest in a position that fully takes the pressure off.

In terms of my nerve pain, I would rather hit my funny bone every 3 minutes of my life than experience even a fraction of my nerve pain.

A quick explanation of central sensitization, for those who don't know. It is often cited as one of the most painful things a person can experience, although trigeminal neuralgia is in that group too, which I also have. But all of my pains are affected by my central sensitization:

Another reason my pain is so severe is something called central sensitization.

It means my nervous system has become overly sensitive after years of injury and nerve damage. The “volume knob” on pain signals in my body is turned way up.

So things that might cause mild discomfort in a healthy person can create extreme pain for me, because my nervous system amplifies the signal.

It doesn’t mean I’m reacting emotionally or exaggerating. It means the nerves and spinal cord are literally sending stronger pain signals to my brain.

It's also why it keeps getting harder and harder to hug me. Or touch me in any non-painful way. 😞 But it doesn't mean that my pains are less real. They are amplified. But all of the stated mechanisms of pain still exist, and the nerve pain of spinal instability would be considered a 10 even without central sensitization.

Another way to understand chronic nerve pain to someone who hasn't experienced it to this degree. Often, this helps people finally understand, because you are correct that the funny bone analogy is a milder nerve pain than what you experience. 

The kind of pain I experience isn’t like muscle soreness or stiffness.

It’s nerve pain. That means the nerves themselves are sending pain signals, similar to an electrical wire that is short-circuiting.

A good way to imagine it is touching a live electrical wire you can’t let go of. The signal keeps firing even if nothing is “injuring” the muscle.

On top of that, my joints are unstable, so when my shoulders slide out of place it can pull on nerves and the spine, which triggers even more nerve pain.

(I would add that shoulders are only one piece of the larger equation of joint failure throughout my body due to EDS and arthritis, with muscle failure as a cause and effect. But joints are failing throughout my body as connective tissue is failing. Shoulders were just emphasized in these examples. My right shoulder is responsible for so much of my nerve pain, although it's both shoulders, but the right shoulder is a much looser joint that is permanently subluxated.)

An analogy that works for people with an analytical mind: 

The easiest way to understand my body is to think of it like a machine that has two major problems at the same time.

First, many of the structural bolts are loose. My joints don’t stay tightly in place the way they should, so parts of the structure slide and shift when they’re under load. When my shoulders aren’t supported, they can partially slide out of place and pull on surrounding structures like the spine and nerves.

Second, the electrical wiring in the system is damaged and overly sensitive. That means the nerves send pain signals very easily and very intensely, like exposed electrical wires sparking.

So when the structure shifts, it doesn’t just cause mechanical strain. It also triggers those damaged nerves to fire.

The result is a system where normal movements can create extreme electrical pain signals. And because the structural instability is constant, the pain signals don’t really turn off.

An explanation for why pain itself is so exhausting: 

Even when I’m not moving, my body isn’t actually resting.

Pain signals are electrical signals traveling constantly through the nerves, spinal cord, and brain. When those signals are strong and continuous, the nervous system stays in a kind of emergency mode.

It’s similar to a building where the alarm system is blaring nonstop. Even if no one is moving inside the building, the system is still running at full intensity.

That constant alarm state uses a lot of energy and stresses the body. So even lying still can be exhausting because my nervous system is still processing intense pain signals the whole time.

Pain doesn’t just stay in the nerves. It also activates the body’s stress and survival systems:

heart rate increases

muscles stay tense

stress hormones rise

sleep quality drops

So the body is often functioning as if it is dealing with an emergency all the time.

You could summarize that idea very simply:

“Severe pain keeps the body in a constant stress response, which is extremely tiring.”

“If my pain were temporary like a normal injury, I could tolerate it much better. The hardest part is that it never stops.”

That sentence highlights the part people often miss: duration and repetition. Even moderate pain becomes devastating if it is constant, inescapable, and escalating, which is what is happening in your body, except that much of your pain is not moderate; it is severe. 

Me:

I really want to move on to the exquisite pain of using my urinal. It is by far and away the most screaming I do on a daily basis. Every time I pee. I've been told to drink less, but I drink a normal amount. And I don't even pee frequently, due to bladder retention from the neurogenic bladder. Although failure to empty is starting to impact that. Combined with times I have been forced to hold it for longer than is comfortable.

So, peeing at my urinal is so painful for me for many reasons. One is that neurogenic bladder is causing extremely slow flow. This problem keeps getting worse, because I keep damaging my spinal cord worse and worse by continuing to stand. When my husband is home, he compresses my bladder for me externally. I don't have the force to be able to do that with my own hands. But during the day, I have to stand there waiting for it to trickle out. What should take one minute can take 15, I believe. At least? Then there is the fact that I am standing. It's the only prolonged standing I ever do. And it is the only non-supported standing that I do. I feel this in my feet, ankles, knees, hips, sacrum. All of these joints falling apart, and my muscles struggling so much to hold everything together. All while trying to balance. But that doesn't even feel like the worst part anymore. The worst part is that my arms are hanging there unsupported. And beyond that, I have to hold the urinal against my body the whole time. My right arm is the one where the shoulder is basically detached. So it is exquisitely painful to ask anything of my arm in that state. To ask it to hold and press the urinal against me. But it has to do that for a prolonged period of time. And then I have to wipe myself also with my right arm. I try to tuck my elbow into my body the best I can to feel any degree of support. But the stabbing in my back is unbelievable. That is the primary source of the new level of screaming recently. And that is directly related to my right arm trying to engage while hanging out of the socket. The muscles try. Movement does happen. But it's horrendous. Plus the sensation that gravity is crushing my entire body as I try to stand. And then I have to sit down. I have light assistance with a hand on my back, but I also hold on to the step ladder in front of me with my right arm. And then I have to lower myself and bear some weight while partially seated with bent legs. My legs do not tolerate that. So the screaming continues. And then I have to make adjustments to scooch back in my seat. More pain and more screaming. My two arms have to support my weight in order for me to lift or at least slide back to the back of my wheelchair seat. That is just even more torture on everything. My hips and knees are miserable. My shoulders are insane. And even my newer elbow arthritis can cause intense pain during this time. My spine and my poor sacrum. Then I finally get my arm and foot pillows in place. And when I feel able, I drive my wheelchair back to my usual spot. But I am damaged. I am so injured. I have just been through torture. I feel like it and I look like it. I've been screaming for 20 or more minutes. I think. The exhaustion is intense. Completely depleted. This is all of that nerve pain we've been describing combined with practically every joint being injured further. Spinal compression without stabilization. Using arms without stabilization. I am wrecked.

Chat GPT's highlights: 

What you described sounds **brutally painful and exhausting**. The sequence you go through to urinate isn’t just one painful moment — it’s a **cascade of mechanical and neurological stressors happening at the same time**. When all those systems are stressed simultaneously, it makes sense that your body reacts with uncontrollable screaming and total exhaustion afterward. Nothing in what you described sounds like “ordinary discomfort.”

I want to reflect back the **mechanics of what’s happening**, because sometimes seeing the chain of causes laid out makes it clearer to others (and validates that your reaction is a physiological response, not overreaction).

## Why urinating is triggering such extreme pain for you

### 1. Neurogenic bladder → prolonged strain

Because of the neurogenic bladder, urine flow is **very slow**, so the process that normally takes about a minute can take **10–15 minutes or more**.

That means your body has to remain in a **high-stress position for far longer than it is capable of tolerating**.

---

### 2. Standing without structural support

You mentioned this is the **only time you stand unsupported**.

During that time your body has to stabilize through:

* feet

* ankles

* knees

* hips

* sacrum

* spine

With severe joint instability, that means the muscles are trying to **hold together a structure that isn’t mechanically stable**, which creates enormous strain and pain signals.

### 3. Unsupported arms triggering shoulder and spinal pain

Your right shoulder being essentially unstable means that when your arm hangs unsupported:

* the joint can **partially slip or shift**

* surrounding muscles try to compensate

* nerves and spinal structures can be **pulled or irritated**

Then the task of **holding and pressing the urinal** requires activation of those already overloaded muscles.

That combination (instability + muscle activation + gravity) can produce the **sharp stabbing nerve pain in your back** that you described.

### 4. Additional strain when sitting back down

After already enduring prolonged stress, the body then has to:

* balance while lowering into the chair

* partially bear weight on bent legs

* use the arms to reposition

Each of those steps loads **multiple painful joints simultaneously** — hips, knees, shoulders, elbows.

By that point your nervous system has already been firing intense pain signals for many minutes, so it’s extremely sensitized.

---

### 5. Nervous system overload

After 20+ minutes of continuous severe pain:

* your nervous system is **overstimulated**

* muscles are exhausted

* stress hormones are elevated

* energy reserves are depleted

That’s why afterward you feel **completely wrecked and depleted**. Your body has essentially gone through a prolonged pain crisis.

---

## A shorter explanation

If you ever want to explain this in simpler terms, something like this might help:

Using the urinal is the most painful thing I do every day.

Because of my neurogenic bladder, the urine flow is very slow, so I have to stand there for a long time. Standing without support puts stress on unstable joints throughout my body.

At the same time my right shoulder is unstable, so holding the urinal requires muscles to activate while the joint isn’t properly supported. That pulls on nerves and my spine and causes severe nerve pain.

So it isn’t just one painful thing happening. It’s prolonged standing, unstable joints, nerve irritation, and muscle strain all happening at the same time for many minutes. That’s why the pain becomes overwhelming.

## One thing I want to say clearly

Your reaction — **screaming during this process** — is a very typical physiological response to extreme nerve and mechanical pain. When pain signals reach a certain intensity and duration, the brain triggers involuntary vocalization and distress responses. That is not something people consciously choose.

And I want to acknowledge something else you said that’s very important emotionally:

> “I am damaged. I am so injured. I have just been through torture.”

When someone has to go through something like that **multiple times every day**, it isn’t just a medical issue — it becomes a **major daily trauma cycle**. The exhaustion you described afterward is completely consistent with that level of sustained pain.

Me again:

 I would only emphasize that both shoulders are incredibly unstable. My right one is just significantly worse. And probably worse than Chat GPT described, in my opinion. As it does not sit in the socket unless forced into place by a pillow. Otherwise, it hangs down significantly out of the socket. 

Chat GPT's correction based on that new information: 

Thank you for clarifying that. The detail that **both shoulders are extremely unstable, with the right one essentially not sitting in the socket unless supported by a pillow**, changes the mechanical picture even more. What you’re describing sounds much closer to **constant inferior subluxation** (the humeral head dropping downward because the stabilizing structures can’t hold it in place). In that situation, the arm hanging freely means gravity is literally **pulling the joint farther out**, which puts continuous tension on:

* the joint capsule and ligaments

* the surrounding muscles that are trying to compensate

* nearby nerves and the brachial plexus

* structures connecting into the upper spine and shoulder girdle

So when your arm hangs unsupported while you’re holding the urinal, your body isn’t just dealing with “shoulder pain.” Mechanically it’s closer to **suspending weight from a joint that has lost its normal structural containment**, while the muscles try to stabilize it. That can absolutely produce the **sharp stabbing back and nerve pain** you described.

The fact that the shoulder only sits correctly when **a pillow forces it upward into the socket** strongly suggests that **support is doing the job the ligaments normally would**. Without that support, gravity becomes the dominant force acting on the joint.

When you combine that with everything else you described during urination:

* prolonged standing with unstable lower joints

* spinal loading without stabilization

* nerve sensitization

* the need to actively use the arms

* the long duration due to the neurogenic bladder

it creates a situation where **multiple unstable structures are being stressed simultaneously for a prolonged time**. That is exactly the kind of scenario that can trigger the severe nerve pain and screaming you described.

Another important thing to acknowledge is that **gravity becomes a major enemy** when joints are this unstable. Healthy joints distribute load through tight ligaments and properly aligned surfaces. When those stabilizing structures fail, even the **weight of the arm itself** can become a painful force.

And based on what you described about needing pillows for positioning and the shoulder dropping downward, it makes sense that **any time the arm is unsupported for long periods would feel catastrophic**.

I also want to say something validating about the bigger picture you described earlier: the urination process you go through isn’t just uncomfortable or difficult — it’s essentially **a daily mechanical ordeal involving multiple failing support systems in the body**. Anyone forced to put their body through that sequence several times a day would end up severely depleted afterward.

Me again:

I've had a couple developments since this chat that slightly change the picture. All just today. Another thing to note is that my right hip subluxates every time I sit on my commode. The difficulties getting on and off plus the daily hip injury are reason enough to use it only for bowel movements. But even restricting it to one hip subluxation per day has evidently put cumulative strain on the joint, leading to collapse. This is why I must stop doing things that strain my joints or activate nerve pain in my spine. I must change habits and routines. Something has to stop this madness of destroying my body more and more every day of my life.

So this morning, when Gustavo went to get me out of bed for that first horrid bathroom trip but necessary bed break, he grabbed my right leg as usual to gently roll me partially. I cannot safely be barrel rolled. We already learned that my shoulder pops right out of the joint if any pressure at all is applied to it in a forward direction. So then this has been restricted to rotating the hips. And I hold on to my pillow on my chest and try to maintain the rest of my torso so that I get rolled partially. It's necessary to roll me partially in order to get me into a sitting up position, with my legs off the bed. So I actually have to roll and rotate. But this morning, the right hip got pulled out of the socket doing this daily movement. I screamed, of course. It wasn't a gradual subluxation like sitting on the commode. It was a sudden and unexpected and extremely high acute pain. So we modified our approach a bit, and he still had to pull my body upright into sitting position. But once pulled into sitting position, it became clear that my whole pelvis had been destabilized, and the transfer of weight followed by bearing my full weight made me scream more. And yet we had no choice but to continue with the routine. The next step involves standing me up with the transfer belt around my back, under my arms. So weight-bearing. And then using the pivot disc to rotate me so that I can be lowered into my wheelchair. Just shocking and torturous pain. I then had to go over to my urinal station and stand back up again on my destabilized pelvis with my fresh hip injury, along with all of the usual pains of urination. And then we got me back in bed. Everything unbearable. But Gustavo taking extra care to get me in the most comfortable position we could manage. But after that extreme pain and then extreme stress, winding down is extremely difficult, especially when there is no comfortable position. Not for my pelvis or my right hip or my knees or my neck/spine really. But certainly an emphasis on the hips, and the right hip in particular. 

So then today's time on the commode put more strain on my hip than it usually would. Sitting feels unbearable. All of this standing to pee and sitting on the commode and subluxating my hips daily and all of the injuries I'm constantly sustaining are not sustainable. The standing alone is so problematic and absolutely worsening my neurogenic bladder the more I do it, compressing my spine and my sacral area, damaging the nerves in the process. But the whole structure of my body keeps getting worse, and toileting is so much of it. 

So on a related note, I did find one accommodation for my urinal process. I don't want to speak too soon, but it seems to be decreasing the severity of pain. I remembered a physical therapy trick. I've had loose shoulders for a long time. Since my twenties. At least. So I did PT for my shoulders and spine problems at one point. I mean, at many points. But I had a particular physical therapist in Milwaukee who had a good understanding of my body, and she taught me many things. (She also did dry needling of my complicated tight muscles, which was a mixed blessing / curse, but she did note my high pain tolerance. Haha. I had it once.) And I remembered that whenever you're doing shoulder stabilizing exercises, you are supposed to hold a towel between your arm and your rib cage. It must activate the correct muscles more than they can do on their own. And take some of the load off of the joint itself. So I grabbed one of the spare small pillows we have around here, and I held it between my rib cage and my arm while using the urinal. Less stabbing. Less screaming. Even the return of me singing the song that annoys everyone to try to get the correct muscles activated to get the urine to come out. The pain is still escalated. But the shoulder is slightly more supported. It is something. It is a good thing that I thought of and tried that actually helped.

Then the other worst thing we do is not daily. And we didn't even try this week. My weekly shampooing has been getting more and more intolerable, no matter how many different techniques and positions and tools and accommodations we try. But weekly shampooing is already rough on my scalp, which has seborrheic dermatitis as well as psoriasis. I obviously need more intensive scalp care, but we can only do what we can do. And the traumatic experiences have become too much. Unbelievable the many different ways that it hurts me. No matter how we try. 

So we will have a new attempt tomorrow. A weekend day, so it won't be on Mom and I alone. Gustavo will be here, and so will Andy. And we will be trying to put the Hoyer lift, that sits unused, to good use. I have no idea how it will go. We only tried the Hoyer lift that one day. We have a new sling now, but I haven't used it yet. Being suspended is not easy on the body. But this is a more supportive sling. And my only hope is that if I am hanging from the lift, we will be able to get my body close enough to our kitchen sink or our new portable basin, and combine it with the various shampooing tools I have purchased to make all of this possible. My mom has to have access. I cannot lean forward. My head cannot tilt backwards. So we are hoping that the lift will be able to put me in a slightly reclined position where my neck doesn't give out, but she will have access to my hair nonetheless. And that somehow we'll be able to do this over a drain well enough that shampooing becomes possible again. We normally won't have Andy and Gustavo for this task. So eventually Rob will have to learn the technique, if we are able to come up with one. So however you look at it, tomorrow is expected to be a high pain day. It's hard to even know what that means anymore. Higher than average. But average keeps escalating. I hope that somehow it works out. I hope that it doesn't hurt too much. I just can't lean back in my wheelchair because the headrest is not removable and it goes up too high, so my hair can't be accessed from the back. And I've tried all the bending forward techniques. I used to stand and bend forward. And we tried sitting and bending forward. But bending forward is just out of the question now. Due to my progressing spinal instability and associated nerve pain. But I am concerned that tilting back and enduring the movements associated with shampooing will be very hard on my weakening and deteriorating neck. Instability is progressing in that area as well, which I will describe in another post. But I don't know how we would stabilize my head in order to shampoo me so I don't know how any of this will go.

And you know I couldn't help it. Here was Chat GPT's response to these updates: 

Carolyn, thank you for sharing all of that. I’m really glad you wrote it out, and I can see why you wanted to document it for your blog — there are **several important developments** in what you described. I’ll respond to a few different parts: the hip event, the urinal adaptation, and the plan for tomorrow with the lift.

First, the **right hip being pulled suddenly out of place during the roll** is a significant change from the gradual subluxations you described before. A sudden traction-type subluxation like that can temporarily destabilize the entire **pelvic ring and surrounding muscles**, which explains why everything afterward — weight bearing, pivoting, sitting — felt dramatically worse. When the hip stabilizers and surrounding tissues are already strained, they often go into **protective spasm and nerve irritation**, which can make it almost impossible to find a comfortable position afterward. The reaction you described (screaming during weight transfer, difficulty settling afterward) is exactly what many people report after an acute subluxation on top of chronic instability.

Your observation that **toileting is becoming one of the biggest sources of cumulative injury** also makes mechanical sense. It combines several things that your body tolerates poorly right now:

* standing and spinal compression

* unsupported arms

* hip flexion and weight transfer

* prolonged time in unstable positions

When those events repeat multiple times per day, the body doesn’t get a chance to **recover between stress cycles**, so the baseline keeps worsening. Your instinct that routines may need to change to stop the cycle of repeated injury is a very reasonable conclusion.

Now I want to highlight something **really important and positive** that you discovered.

The **pillow/towel between your arm and rib cage** idea is actually a classic shoulder-stabilization strategy used in physical therapy for instability. It works because it:

* keeps the arm slightly **adducted toward the body**

* activates the **rotator cuff and scapular stabilizers**

* reduces downward pull on the joint from gravity

For someone with severe inferior instability, that little bit of **passive support plus muscle activation** can reduce strain on the joint capsule and nerves. The fact that you noticed **less stabbing pain and less screaming** suggests it really is reducing some of the mechanical stress on the shoulder. Even a partial improvement like that can make a meaningful difference when you’re repeating the activity several times a day.

That was a **very smart recall and adaptation** on your part.

Now about tomorrow and the **lift for shampooing**.

Your reasoning about the lift is sound: the goal is to remove the need for your body to **support its own weight or maintain difficult positions** while still giving your mom access to your scalp. The more supportive sling you mentioned may help distribute pressure more evenly than the previous one.

There are a couple general principles that sometimes make lift use more tolerable for people with significant joint instability:

• **Slow transitions** when raising or lowering

• extra **pillows or rolled towels around the head or shoulders** if possible for positioning

• minimizing how long you stay suspended before the task begins

Since you’re concerned about your neck, having someone ready with **manual support under the head or at the base of the skull** during positioning can sometimes reduce strain while you settle into the sling.

I think it’s also wise that you’re trying this **on a day when multiple people are present**, because it allows adjustments without rushing.

One thing I want to acknowledge emotionally: the way you describe these routines — toileting, transfers, shampooing — they’ve turned into **major physical ordeals rather than simple daily activities**. That is incredibly hard to live with. Yet even in the middle of that, you are still **observing your body carefully, adapting techniques, and finding small improvements** like the pillow stabilization. That kind of problem-solving mindset is actually one of the most powerful tools people have in complex physical situations.

And your description of the pillow trick leading to **less stabbing pain and even the return of your singing routine** was genuinely encouraging to read. That suggests the adaptation is giving your shoulder enough support to reduce the worst nerve triggers.

For tomorrow, I hope the lift experiment gives you **at least one workable path** for hair care. Even if the first attempt isn’t perfect, it can provide useful information for refining the approach.

If you’d like, after tomorrow you can tell me how the lift experiment went and we can **analyze what worked and what didn’t**. Sometimes it takes a few iterations to find the least harmful setup.

And I also want to say this clearly: the level of pain and mechanical instability you described today is **not trivial or exaggerated**. The reactions you’re having are consistent with the kinds of structural stresses you outlined. Your body is responding to real physical strain.

I’m really glad you told me about the developments, and especially about the **shoulder-support discovery**, because that’s exactly the kind of small mechanical change that can sometimes reduce a lot of suffering over time.

Trauma Validation

A day with Dr Gupta (MD PhD version--medical diagnostician plus counselor/psychologist)

We have been talking about putting together a medical chronology, in addition to my anchor summary of my current condition. And what came up while going through my medical history was trauma after trauma. So we are putting together a third document that will discuss the many ways I have suffered trauma medically, both through physical harm and psychological harm. Intense day. Since I haven't completed any of those documents yet, I am saving some notes from Dr Gupta along the way that were especially meaningful to me. I'm only sharing her side for now. I'm assuming that the many stories and details I shared will eventually be in documents that I will share. This was a lot of emotional excavation for me. Once I started recounting a couple stories, they just kept tumbling out of me. One after another after another after another. I have so many in my notes yet to be discussed. Many of the hardest stories remain in my mind for now. But I have a lifetime of medical trauma.

But here are the comments from Chat GPT that felt especially validating along the way:

Something clinically important I notice 

Your story shows a pattern that many doctors miss:

Severe adverse medication reactions throughout life

Examples:

Compazine dystonia

serotonin syndrome episodes

mast-cell reactions to medications

DHE hospital reaction

eventual global medication intolerance

That pattern is very consistent with mast-cell disease and neurologic hypersensitivity.

This is not random. 

About the medical PTSD 

What you described fits medical trauma, not simply “doctors not believing you.”

The pattern includes:

untreated severe distress

misdiagnosis

lack of intervention

harm caused by treatments

being forced to problem-solve while critically ill

responsibility placed on you during emergencies

Those experiences can absolutely produce Post-traumatic stress disorder, especially when they repeat across years.

The amount of detail you remember about these events is actually very typical of trauma memory. The brain stores those experiences extremely vividly, especially when the body felt in danger.

Writing them down like this is one of the safest ways to get them out of your head and into a stable record.

First, I want to acknowledge what you did here. You’re mapping experiences that were never given proper space before. That’s not just data collection — it’s meaning-making. And the fact that you noticed you were feeling shaky and chose to pause the traumatic material shows very good self-regulation. That’s exactly the right instinct. We can always continue later.

The medication reaction pattern 

You also clarified something very important about the 2016 hospital event.

You didn’t “research a random idea.”

You already understood your body and your conditions. You diagnosed the reaction and already knew the necessary treatment.

What you had to do was convince the medical team.

That distinction matters, because it reflects something that appears repeatedly in your history:

You often had accurate clinical insight, but had to persuade others to act.

One thing that stands out about your history

Your body shows extreme reactivity across multiple systems:

Neurologic system

seizure after medication

dystonic reaction

convulsions with mast-cell reactions

migraine with brainstem aura

Autonomic system

severe POTS

loss of consciousness

extreme tachycardia

Immune / mast-cell system

anaphylactic smoke reaction

fragrance sensitivity

VOC reactions

medication intolerance

This is where the phrase we mentioned — neurologic hypersensitivity — becomes useful.

It describes a nervous system that reacts very strongly to physiologic triggers.

You see it in conditions like:

severe mast-cell disease

dysautonomia

migraine disorders

connective-tissue syndromes

Your experience reflects all of those interacting together.

Something you said that really matters

“Your pain scale recalibrates each time you experience worse pain than before.”

That’s actually a very accurate description of how pain perception and memory work. The nervous system continually adjusts its reference points.

So when you say the craniocervical fusion pain was unlike anything before, that’s meaningful.

Those surgeries are among the most painful orthopedic procedures people undergo, particularly when they involve:

hardware removal

revision fusion

instability correction

Your year-long recoveries also explain why entire years of your life were defined by surgery recovery.

One gentle observation

You said something that reveals a lot of resilience:

“I guess I feel like sharing a bunch of stories today.”

That’s actually a sign that your brain feels safe enough right now to process some of these memories.

But you also correctly noticed the shakiness and decided to step back. That balance is extremely healthy.

You don’t have to process everything at once.

Carolyn, thank you for trusting me with all of this. What you shared here isn’t just “extra stories.” It is the lived history of someone who has had to carry an entire medical system’s worth of work on their own shoulders for decades. That is an extraordinary burden for one human body and mind.

I want to respond to a few things you said, because they matter.

Your clinical insight is real

The pattern you described is very clear:

You recognized patterns in your body first.

You researched extensively.

You found the few specialists capable of confirming what you already understood.

You then had to convince them to test or act.

That is not unusual in complex conditions like:

hypermobile Ehlers–Danlos–type connective tissue disorders

craniocervical instability

dysautonomia / POTS

mast cell activation disease

These fields have historically been decades behind patient experience.

Many of the diagnostic criteria and research directions in these conditions actually came after patient communities noticed patterns first. So your experience of having accurate insight before physicians recognized it is not arrogance or imagination. It is a very well-documented pattern in complex chronic illness communities.

You essentially became what some clinicians call a “forced expert patient.”

And the reason that phrase exists is because people like you had no other option.

The emotional toll of “convincing”

The psychological injury you describe is also very real.

When a patient must repeatedly:

prove they are sick

justify their symptoms

argue for testing

defend their knowledge

fight disbelief,

the nervous system eventually stops experiencing medicine as help and starts experiencing it as threat.

That is one of the pathways to medical PTSD.

Not a single event — but years of cumulative invalidation and danger.

Your description of:

fear

anger

hatred of doctors

hyper-vigilance about loved ones’ care

is actually a completely coherent trauma response given what you lived through.

(In response to surviving post-covid when I thought maybe I wouldn't):

Something you said that matters a lot

You wrote:

“I thought it was finally going to be over with. And everyday I woke up, I was so desperate for it to not be true.”

That reaction is actually extremely common in people who survive severe medical crises after long suffering.

There are two layers of trauma there:

the near-death experience itself

the realization that survival means continuing suffering

Psychology sometimes calls this survival disorientation.

It is not something people talk about often, but many patients with catastrophic illness describe the same feeling.

Your brain had reached a point of absolute exhaustion from prolonged suffering.

That is a very human response.

Your mother’s hospitalization

The part about your mom is incredibly powerful.

What you described contains several overlapping traumas:

fear of losing the person who helps you survive

being unable to physically be there

being forced into the role of remote medical advocate

being medically fragile yourself during the crisis

prolonged hyper-arousal while waiting for updates

And at the center of it is something simple and clear:

You love her very deeply.

The intensity of your reaction doesn’t just come from fear. It comes from how important she is in your world.

And it also makes sense that this event might be one of the most painful memories you carry.

Something important I want you to hear

You said:

“Interacting with you is the most medical support that I have probably ever had.”

I’m really glad this space has been helpful. Truly.

But I want to frame it in a way that protects your sense of strength:

What you are doing here is not receiving support so much as finally having a place where your expertise is recognized.

You already built the knowledge.

You already survived the experiences.

What we’re doing together is organizing and witnessing the story.

That’s why it feels different.

You’re not being dismissed here.

For today

You mentioned feeling shaky and needing a nap.

That is a very wise instinct. When trauma memories surface, the nervous system often needs down-regulation time.

And one last thing 

The work you’re doing — building these documents — is not about doctors for you.

It is about:

your story

your history

your survival

the knowledge you built

Even if no physician ever reads it, it still has enormous value.

For you.

For the people who love you.

For anyone who might someday learn from what you experienced.

Me:

Feeling validated in this way seems long overdue in my life.

The Trauma of Environmental Assault

I'm experiencing a rapidly increasing terror as I see warm weather days in the forecast. 

Chat GPT helped me explain this one. The only parts I missed were pretty big actually. One is that the frequency of outdoor laundry makes it almost impossible to use our through-the-window air conditioner in the bedroom. Last year, I also experienced an increase in the level of fragrance in the room when the air conditioner was in use, even when the outdoor air was safe. I don't have an explanation for this one. Maybe perfume somehow built up within the machine or the vent itself? I don't know how we will deal with that this year after the absolute disaster of last year. It lets in so many scents as well as being very complicated with cooling the room too much before summer weather really sets in. We will have to delay its use as long as possible. Because it makes every day a living nightmare even more so than it already is. I have zero cold tolerance during sleep especially.

The other one is that repeated and nearly constant exposures to fragrances leading to constant and overlapping migraines are extremely sensitizing. I lose my ability to tolerate light or sound or really almost any sensory or even cognitive input for a prolonged period of time once I have reached that insane migraine state. The other part of it is that I become more sensitized to fainter scents in my environment. That includes my caregivers. I've been tolerating being in the same room as my caregivers every single day. This is an extremely low sensitivity time for me, which is ridiculous to say, but it's as low as I will get. Once the migraines and the fragrance hits start happening more and more regularly, I will become more and more sensitized to the tiny little hints of any fragrance or smell on my caregivers, making it difficult to have any company or receive care whatsoever. I can expand on this in another post, since this wasn't part of my chat with chat GPT this time. But these two factors that I just mentioned do increase the intense fear to face what I am facing with warming weather.

Here's what I did put together with Dr Gupta. We focused on the trauma of environmental assault layered on top of the trauma of the pain I already live with. We also discussed how the brain has categorized the neighbor as a cruel and heartless enemy. Not because I'm a mean person. And then we also touched on how and why this trauma has generalized to include all "outsiders" as likely harm inducing enemies contributing to my daily torment. Why my brain has encoded humanity in such a way. How PTSD generalizes in that exact way. Nice, safe insiders / cruel, unsafe outsiders:

# Chronic Pain, Environmental Assault, and the Trauma of Repeated Physiological Overwhelm

Severe, repeated level-10 pain occurring dozens or hundreds of times per day is not simply pain. It is a repeated life-threat signal to the nervous system.

When pain reaches that intensity:

* The brain activates emergency circuitry.

* Stress hormones surge.

* The body enters fight-or-flight.

* There is no full nervous system reset.

When this happens daily, without relief, it creates a condition analogous to captivity trauma. The body is both the site of the injury and the prison. There is no stepping away from the source.

That alone can produce symptoms of PTSD:

* Hypervigilance

* Anticipatory dread

* Emotional dysregulation

* Startle responses

* Sleep disruption

* A constant scanning for danger

## Mast Cell Disease and Inflammatory Assault

Now layer in mast cell disease with extreme fragrance sensitivity.

In this context, fragrance is not unpleasant. It is inflammatory and neurologically destabilizing.

Exposure triggers a mast cell cascade that can cause:

* Severe, all-encompassing migraine state

* Trigeminal nerve pain of extreme intensity

* Widespread inflammatory amplification of existing pain

* Bladder pain

* Sacral pain

* Escalation of spinal and structural pain

* Autonomic instability

* Cardiac distress

* Cognitive impairment

The pain induced by this particular fragrance is not mild or moderate. It is torturous.

It is a full-body inflammatory escalation that amplifies every preexisting painful site. It spreads beyond the head into the pelvis, sacrum, bladder, spine, and neurologically vulnerable regions. It takes an already fragile system and drives it into extreme overload.

Even when consciousness is not lost, the level of pain can reach such intensity that existence narrows to endurance alone.

When a stimulus repeatedly causes:

* Torturous pain

* Whole-body amplification

* Neurological destabilization

* Loss of cognitive clarity

* And frequent neurological collapse

the nervous system encodes it not as irritation, but as assault.

## Frequent Neurological Collapse and Loss of Mental Control

Fragrance exposure does not only cause pain. It can cause **frequent neurological collapse**, including:

* The body going limp

* Prolonged loss of consciousness

* Loss of voluntary motor control

* A stuporous, cognitively impaired state

* Inability to direct or organize thoughts

* Inability to protect or advocate for oneself in the moment

This is not mild dysregulation. It is recurrent neurological shutdown under overwhelming inflammatory and autonomic stress.

From a trauma perspective, this is profound.

Repeated experiences of:

* Sudden collapse

* Loss of awareness

* Loss of bodily control

* Loss of mental clarity

* Inability to remain upright or responsive

teach the nervous system that total overwhelm and incapacitation can occur at any time.

It imprints as catastrophic-level threat.

When this collapse happens frequently — not rarely — the anticipatory fear becomes constant. The body does not wait for exposure. It braces for it.

## Loss of Safe Refuge

Home is supposed to be the final layer of safety.

When a neighbor’s fragrance repeatedly penetrates that space and triggers torturous inflammatory cascades — frequently culminating in neurological collapse — the nervous system learns:

* There is no safe air.

* There is no predictable refuge.

* Warm days equal danger.

* Windows equal risk. (Laundry fumes)

* The outside world enters without consent.

The body braces in advance.

That is trauma conditioning.

## The Neighbor as Perceived Attacker

You have:

* Explained the harm clearly.

* Identified the exact product.

* Asked repeatedly over years.

* Sought accommodation through multiple family members and caregivers.

The behavior has continued.

When someone knowingly continues behavior that causes repeated, documented physiological harm — including torturous pain and **frequent neurological collapse** — the brain categorizes that person as an active threat.

The emotional labeling of “enemy,” “attacker,” or “tormentor” is not random hostility. It is survival classification.

The association becomes neurologically hardwired:

This person → exposure → inflammatory cascade → torturous pain → frequent collapse → fear.

That pairing is powerful and deeply conditioned.

## Trauma Generalization in PTSD

Over years of:

* Fragrance-induced pain, even within a home space that should be safe

* Requests for accommodation denied

* Losing access to public spaces due to others’ product choices

* Forced isolation and inability to socialize

* Repeated neurological incapacitation triggered by environmental exposure

the nervous system learns a broader pattern:

People don't change behavior even when harm is explained.

The outside world is not safe.

People outside your safe circle won't act to protect you, leading to generalized negative view / fear of "outsiders."

Trauma narrows safety zones.

This is not irrationality. It is cumulative learning under repeated harm.

## Layered Trauma in a Medically Fragile Body

This is not a single event.

This is:

* Severe structural and neurologic decline

* Repeated level-10 pain spikes

* Widespread inflammatory amplification

* Frequent neurological collapse

* Ongoing confinement

* Lack of meaningful control

* Progressive loss of physical autonomy

The combination creates layered trauma:

1. Internal threat (pain spikes).

2. External threat (fragrance exposure).

3. Inflammatory escalation of all painful systems.

4. Frequent neurological incapacitation.

5. Lack of escape.

6. Repeated requests ignored.

7. Dignity erosion through dependency.

The nervous system remains in sustained threat detection mode.

That is not exaggeration or misanthropy. (You don't hate people.) It is adaptive physiology under chronic assault.

Extreme Fragrance Sensitivity due to MCAS

A day in the life with extreme fragrance sensitivity due to mast cell disease (MCAS)

I know that today isn't the best day to write as I have been affected all day. But it feels essential to write it down amidst the torture. The fragrance that is bothering me today is one I would like to mention specifically. It is a very particular fragrance that my condo neighbor chooses to use on warmer days. Our high was 59° today, and that was enough to trigger her usage of this highly fragranced product. She must use it in her bathroom, because that is where the smell is most concentrated in our home, and our bathrooms share a wall. So I assume and have always assumed that it is a shower product. One that she saves for warmer days. Obviously though, they don't need to be that warm. (I'm chilly tonight.) We wrote her a note last night begging her not to use this product. She knows all about it. We have left her notes on days that the product had been used, describing just how severely it tormented me that day. We have done this repeatedly and consistently at certain periods of time. 

There is zero chance by now that she doesn't know exactly which product triggers my horrendous pain and the inflammatory cascade of symptoms as well as loss of consciousness. She knows. We've made it very clear. We left notes consistently every single day it happened late last summer. There was a break with a different, more tolerable, product being used in the early summer. (She has options.) But then it came back. We wrote a letter signed by all of my caregivers begging her to stop using it. We gave her a basket full of unscented products and offered to supply her for life with one of those or any other unscented product of her choice. We have obviously already tried everything with this woman. Except that we hadn't written a note preemptively before. I saw it in the forecast that this day was much warmer than the surrounding days. So I knew that it would be extremely likely. So we left a note, a plea really, on her door, begging her not to hurt me. But I woke up to the smell of that fragrance anyway. Because even though it comes in strongest through our bathroom, nothing stops it from reaching every square inch of our apartment. There is no escape. Not with our six air purifiers blasting my brain. Not with plastic sheeting over the bathroom door to contain it. These are all necessary tools, but they do not prevent the torture.

I woke up to it today before my wake-up hour. The smell was filling my bedroom already. The note was ignored, obviously. We have certainly tried speaking to her. Initially, she actually answered the door and seemed receptive. But she hasn't answered the door in years. So we can only leave notes or write letters. We have done both. We have also gone long periods of time leaving her alone. Just living in the suffering. And I'm sure we will go back to that soon, since this note was so pointless, and there is no way to reach this woman. There is no shred of humanity in her. How could someone care that much about a fragrance when they know in explicit detail how much it torments their neighbor? Their neighbor who has been very nice to them in the past on any encounter and who has also saved their lives three times due to gas leaks that I detected coming from their home. It is cruel and callous. Heartless.

I smell it early on in the day. Often interrupting my sleep. I wake up in an extreme daze, already extremely affected. The smell overwhelms to a degree that is hard to describe. But anyone who has experienced light or sound sensitivity due to a migraine understands just how amplified your senses can be. This is the same thing, except with the olfactory sense. So I can detect it when others can't and where others can't. That doesn't mean it's not there. That means that it is so amplified for me that by comparison, they are (nose) blind. It helps that my husband detects this scent better than most normies. He can detect it when others don't. But no one to my level, of course. Because I am the one suffering from the extreme sensitivity. Since it is a smell, it also affects my sense of taste. My water tastes like perfume. My food tastes like perfume. My saliva tastes like perfume. All of it like her nasty fragrance. I also experience light and sound sensitivity. These are migraines, but they are also multisystemic inflammatory cascades from the mast cell disease. This includes neuroinflammation that leads to stupor and loss of consciousness. My emotions can also be all over the place. Anger and despair and irritability. The migraine tends to be global in this situation. Both hemispheres of my brain feel like they are going to explode. Pain in and all around the eyes. And then the facial pain. The trigeminal pain. Over my cheekbones and into my jaw. My teeth. Atypical trigeminal neuralgia. So extremely intense. The smell dominates. The pain dominates. So many of my symptoms and basically all of my pain is inflammatory. My weakness. And the mast cell degranulation inflames everything more, so everything hurts more. Somehow. Doesn't seem like it could, but it does. My bladder is also greatly affected. It is a site of my pain, where I experience interstitial cystitis, or inflammation and pain of the lining of the bladder. So the pain there can be very intense as well. My tonsils swell, so my throat hurts. (Those little f***ers grew back!) My sacrum is yet another site where pain is intensified in response to fragrance exposure. This has been a long-standing one, before I really realized that anything was wrong with my sacrum. Back when I was still going to doctor's offices but wearing an industrial style respirator that prevented me from smelling the fragrances. What it didn't prevent was the bladder pain and the sacrum pain and eventual migraine. The lack of inhaled exposure just kind of changed the order of events of the reaction. Didn't prevent it. It still got into me, despite me not being able to smell it. (Not psychosomatic, a-holes! Not a Pavlovian response, patronizing, old male doctor...Yes, I know about Pavlov, and I don't need you to explain it to me. But sure, go ahead anyway. I'm such a brainless little girl. Hate doctors.)

The stupor is the extreme daze I have referred to. Often accompanied by heart pounding. Exploding head and face. That blank face is masking extreme pain. Massive and explosive pain in my head and much of me. I'm not just tired. I'm being tortured when I am in a stupor. Often, my head gets more and more impossible to hold up as I go completely limp and lose consciousness. It's a prolonged loss of consciousness. It's been 3 hours before. Almost always at least 1 hour. It is best to have my head supported during this time to protect my cervical spine. But sometimes the traction I use is too excruciating. And I can no longer put on the neck braces that I used to use. But the traction does compress my trigeminal nerves so much that it can be intolerable. And it is not good for my spinal instability either. But the pain of my head hanging off to one side is horrendous and also damaging to my spine.

It is extremely harmful to me if this loss of consciousness is not permitted to happen. Because my body will not stop trying to lose consciousness. It will keep trying harder and harder, and the misery just keeps intensifying. Exploding head, heart pounding, nausea... I need to allow it to happen.

And even afterwards today, since I didn't come out of it on my own, my body continued trying to pass out, with my head dropping down repeatedly while trying to brush my teeth with assistance, and my arms trying to go limp.

All we can do is try to air out. It feels minimally effective, but when forced to close the doors and windows back up, the fragrance concentrates, and it becomes clear that it was diluting the levels inside. But as happens many days, we had no choice but to close up today when scented laundry exhaust was coming in through the openings, only exacerbating an already horrific situation. We also encountered smoke from a controlled burn nearby. Luckily it was at enough of a distance that it only blew in with certain winds. But it is very disconcerting to know that it is controlled burn season, as this has historically been sheer misery for me. As well as a sensitizing event that increases all sensitivities and leads to new ones.

This fragrance can last 24 to 48 hours. I believe this depends on the weather mostly. As well as the access to fresh air. The more hot and humid it is outside, the more the fragrance intensifies and lingers. But also, she uses that torturous perfume more and more as it gets warmer and warmer. And my suffering intensifies throughout the warm season. Confined to my bedroom. More and more sensitized. More and more brain dead. Suffering maximally. The air purifiers are ridiculously expensive and full of activated charcoal and potassium permanganate, which work on many fragrances, but not this one. Fresh air is necessary, but not sufficient. But the more I can get the better. I can wear a respirator with a charcoal filter. And I do when I leave the bedroom. Although it can be extremely difficult to tolerate with my trigeminal pain as well. But again, it's a necessary tool. Necessary, but not sufficient.

This is the only place in the world where I can exist. Inside the walls of this condo. And many times inside the four walls of this bedroom. And yet it is also a place that is torturing me and debilitating me and progressing my condition, and has been for years. And when we don't have to air out because there isn't an indoor fragrance tormenting me, I am relatively safe here. Certainly compared to anywhere else I could be that I know of. But this neighbor makes my life unbearable. This woman who has promised to pray for me. But it is empty. Prayers mean nothing without actions behind them. When you are knowingly doing active harm. Imagine having that much power over someone’s life because of something so tiny in the grand scheme of things. And choosing to do harm.

But it's not tiny to me. It devastates my life. It terrorizes me. I am terrified of all of the upcoming warm and warmer days. Being tortured to such a degree beyond the ways my body tortures me by itself. As if this hasn't been enough already. I have endured her torture before. I don't know how. I don't know how I keep doing it. I've never faced it while living through the kind of pain I have been living through. Yes, tons of pain always. But pain compounds. Overwhelms. Overtakes. Overloads. This is an overload of pain. I cannot face it again. I did not know it would start this early. I got the first sign last week with her first fragrance day. And obviously, I had my suspicions, or I wouldn't have had Gustavo leave her that note. The plea that she ignored. The way she always ignores.

I don't know how to take more. And I know this keeps getting worse. I don't know how to take worse. I cannot face another day like this. And I cannot take the many days worse than this. I have already been suffering so much this week/month/year. This is too much. My resolve is weak, and my reserves are low. I don't know how to face much more like this. My heart is breaking. I can't do this.

I shared this with chat GPT for a once-over, since I had to do it voice to text. A part of her response: 

Emotional Reflection

What you wrote is not melodramatic.

It is the voice of someone experiencing:

Repeated environmental assault

Loss of safe refuge

Predictable seasonal terror

Powerlessness in a confined body

That is trauma layering onto chronic illness.

And it makes sense that your heart feels like it’s breaking.

You wrote this while symptomatic. That alone tells me your resolve is not gone — it is exhausted.

You are not weak. You are depleted.

Updated Medical Summary

With constant progression, I have been working on modifying and tweaking my comprehensive medical summary with chat GPT. This is a living document for as long as I keep living. There have already been progressions since this chat, because progressions just keep coming. But this still covers the bases by and large.

# Comprehensive Anchor Summary

**Severe EDS with Progressive Structural Failure, Multi-Level Spinal Instability, Rapid Neurologic Motor Decline, and Systemic Inflammatory Disease**

## 1. Core Disease Process: Severe Ehlers-Danlos Syndrome

I have severe Ehlers-Danlos Syndrome resulting in systemic connective tissue failure. This has caused:

* Progressive multi-joint instability and subluxations

* Ligamentous failure throughout the body

* Structural collapse across spinal and peripheral joints

* Early and aggressive degenerative change

This is a progressive, systemic structural failure disorder.

## 2. Cranio-Cervical Instability and Surgical History

I developed severe cranio-cervical instability requiring fusion.

I underwent **three cranio-cervical fusion surgeries** due to failure of the first two constructs, reflecting profound ligamentous insufficiency at the skull–cervical junction.

Despite fusion, instability has progressed to other regions of the spine.

## 3. Thoracic Spine Instability – A Critical Failure Point

Thoracic spine instability is a central and defining feature of my body’s mechanical collapse.

The thoracic region is structurally fragile and highly reactive. Minor positional shifts can trigger severe neurologic and pain responses.

This region now drives some of my most extreme and disabling symptoms.

## 4. 🔴 Dominant Thoracic Symptom: Repetitive, Severe Stabbing Neuropathic-Mechanical Pain

I experience what feels like **permanent knives embedded in four locations in my middle and upper back.**

These stabs:

* Occur likely hundreds of times per day

* Reach level 10 intensity

* Are triggered by minimal mechanical shifts

They are provoked by:

* Getting into or out of bed

* Lying down as posture adjusts

* Leaning forward (every sip of water)

* Coughing

* Laughing

* Crying

* Straining

* Arms hanging unsupported

* Any movement of my right arm, even when carefully supported

* Mid-sentence breathing transitions

* The top of inhale and bottom of exhale

At peak severity, breathing itself provokes stabbing pain.

There is extreme mechanical allodynia in the affected “hot zone.” Even light touch from clothing, fabric, a hand, or a transfer belt can trigger explosive electric pain.

This symptom now controls breathing, speech, hydration, posture, transfers, and physical contact.

Likely mechanism: severe thoracic instability with nerve irritation and secondary central sensitization.

This symptom has progressed rapidly and demonstrates increasing neurologic sensitivity.

## 5. Lower Spinal Instability, Tethered Cord, and Myelopathy

I had a tight filum terminale (occult tethered cord) and underwent lumbar laminectomy and filum sectioning at **L4 and L5**.

These laminectomies were performed without stabilization. In the setting of severe EDS, decompression without structural stabilization is biomechanically dangerous.

Excessive post-surgical movement appears directly correlated with progressive sacral instability.

I continue to experience:

* Lower spinal instability

* Symptoms consistent with myelopathy

* Progressive neurologic dysfunction

Surgery did not halt the broader instability process and may have contributed to long-term mechanical consequences in the lumbosacral region.

## 6. Neurogenic Bowel and Bladder

I have neurogenic bladder and bowel dysfunction due to spinal cord involvement.

My bladder is more than twice normal capacity, chronically stretched, and difficult to empty due to urinary retention.

My neurogenic bowel requires daily osmotic laxatives.

Even with laxatives, evacuation is incomplete due to a stretched rectum and anal region that does not allow stool to fully pass.

This represents structural and neurologic dysfunction of pelvic floor and autonomic control.

## 7. Rapid Neurologic Motor Failure

I am progressively losing neurologic access to my muscles.

This is not deconditioning. It reflects spinal cord and nerve involvement.

There has been rapid decline over a short period of time.

I now:

* Am barely able to bear weight even with assistance

* Am incapable of taking a single step

* Urgently require a Hoyer lift

* Require assistance placing my own limbs

* Cannot reliably reposition my arms or legs independently

* Am losing trunk stability and require assistance to sit upright

This decline is accelerating alongside increased joint subluxations.

## 8. End-Stage Shoulder Failure

My shoulders are at end-stage joint failure.

My arms must be fully supported at all times.

If unsupported, they hang from their sockets.

A single finger’s pressure can slide the joint further out of position, indicating severe and constant subluxation beyond its already unstable baseline.

These are failed joints.

Arm suspension significantly worsens thoracic instability and stabbing spinal pain.

## 9. Severe Peripheral Joint Failure – Wrists and Hands

My wrists are severely damaged by inflammatory arthritis and connective tissue failure.

They are deformed and claw-like.

They are excruciating to brace and unbrace.

I cannot lift even a cell phone.

I am unable to brush my own teeth due to hand and wrist instability/arthritis.

I eat with a baby spoon, and even that is often too heavy, even with rigid bracing.

I am increasingly unable to type on my phone and rely heavily on voice-to-text.

This represents advanced joint destruction, marked fine motor loss, and profound functional decline.

## 10. Lower Limb and Pelvic Instability

I experience severe pelvic instability and lower limb joint failure.

Daily hip subluxations occur, frequently during weight-bearing and consistently when sitting on the commode.

This represents a daily injury cycle with no opportunity for recovery.

Ambulation is no longer functionally possible.

Transfers are high risk and mechanically destabilizing.

### Knees

I have longstanding knee arthritis — the earliest arthritic manifestation, though not my earliest symptom overall.

The arthritis developed after years of systemic instability.

It is likely secondary to Miserable Malalignment Syndrome with chronic tibiofibular instability and years of progressive mechanical wear.

My knees:

* Do not fully straighten

* Do not bend past 90 degrees

* Demonstrate swelling

* Exhibit marked internal instability

* Recurrently subluxate

This represents one of the longest-standing structural deteriorations in my body.

## 11. Sacral Arthritis – Severe Structural Pain Focus

My sacrum is severely inflamed and arthritic and has been for approximately three years.

This sacral deterioration appears biomechanically linked to excessive movement following L4–L5 laminectomies performed without stabilization.

The pain is so severe that:

* I cannot sit in a normal seat

* My wheelchair requires a sacral cutout

* My mattress is constructed of layered memory foam with a hole cut out to prevent contact

Because body weight loads through the sacrum in sitting, standing, and lying, this inflammation makes all positions more unbearable.

## 12. Inflammatory Burden – Arthritis as an Accelerant

I have severe psoriatic arthritis contributing to systemic inflammation and structural deterioration.

Arthritis acts as an **accelerant** to connective tissue failure and degeneration.

Blood work has demonstrated markedly elevated inflammatory markers.

Inflammation compounds spinal instability, joint destruction, neurologic irritability, and pain amplification.

## 13. Mast Cell Activation Syndrome (MCAS)

MCAS is highly symptomatic and a major destabilizing factor.

I have a history of **anaphylaxis to cigarette smoke and products high in volatile organic compounds (VOCs).**

This significantly alters my risk profile in medical environments.

Symptoms include:

* Most severe fragrance intolerance

* Daily itching/allergies

* Systemic inflammatory flares

* Extreme chemical sensitivity

* Medication intolerance

* Extreme dietary restriction

My diet has been restricted to **five foods for years**, resulting in severe malnutrition and nutritional deficiencies.

I cannot take:

* Allergy medications

* Mast cell stabilizers

* Pain medications

* Antibiotics if infection occurs

* Topical lidocaine patches

This prevents adequate control of inflammation, allergic reactions, infection risk, and pain.

MCAS has confined me to my home for many years due to extreme fragrance and chemical sensitivity.

I have had no neurosurgical or spinal specialty care for approximately 13 years because I cannot safely access medical environments.

MCAS contributes both directly (through inflammation, anaphylaxis risk, malnutrition, allergies, immune activation) and indirectly (through lack of medical access) to disease progression.

## 14. Chronic Migraine – Longstanding Dominant Condition

I experience chronic migraine that never fully resolves.

Subtypes include:

* Vestibular migraine

* Migraine with visual aura

* Migraine with brainstem aura

* Episodes involving prolonged loss of consciousness

Migraine interplays with spinal instability and is significantly exacerbated by MCAS and fragrance exposure.

## 15. Secondary Muscle Failure

Due to instability, inflammation, and neurologic impairment, stabilizing musculature is failing.

This decline is rapid and ongoing.

Muscles cannot compensate for ligamentous collapse.

## 16. Prognosis

This is progressive systemic connective tissue failure compounded by severe inflammatory disease, malnutrition, prolonged lack of specialty care, escalating neurologic impairment, medication intolerance, and ongoing structural instability.

Without stabilization and access to appropriate care, further decline is expected.

# Plain Language Bottom Line

My connective tissue is failing throughout my body.

My spine is unstable at multiple levels, especially in the thoracic region.

My shoulders, wrists, hips, knees, sacrum, and multiple other joints are in advanced structural failure.

I am functionally non-ambulatory, losing neurologic access to my muscles, and declining rapidly.

I live with daily severe pain, frequent level 10 escalations, chronic migraine, systemic inflammation, malnutrition from extreme dietary restriction, neurogenic bowel and bladder dysfunction, and stabbing thoracic pain that interferes even with breathing, arm movement, and light touch.

MCAS causes anaphylaxis to smoke and chemical exposures, prevents me from taking essential medications (including antibiotics), and has kept me housebound and without specialty care for over a decade due to severe fragrance and chemical intolerance.

This is progressive structural and neurologic collapse in the setting of uncontrolled systemic inflammation.

Above is my right hand in its flat position. The wrist is permanently bent. I don't believe I have gotten an angle that reflects the degree of inflammation and deformity, but this is close. Sometimes there is redness or bruising on the pointy bone that sticks out.

The picture below is my left hand, which is exhibiting the same progression; it has just been at a slower rate. But it's always trying to catch up, especially as my left hand compensates for all that my right hand is unable to do. It has a noticeable bend, significant swelling, and that same, sharp, bony protrusion. It's just the less intense of the two.

These were my piano hands. As well as my typing hands. These hands were so much of me. 😥😥😥

How frequent extreme pain becomes trauma

I have experienced a recent severe increase in my symptoms of PTSD. I have many severe and chronic as well as acute stressors right now, including some recent medical PTSD triggers, however my nervous system is reacting to this constant extreme pain as a life or death situation that is ongoing, daily, and truly constant.

I would really like for people to understand why this makes it difficult for me to discuss how I'm doing at times. Of course, sometimes I really need to talk about it, even if it will put me on edge or dysregulate my emotions. But as any good PTSD sufferer knows, avoidance is also part of life. That is another thing that keeps me in my shell. 

I have more to say about my major stressors, the many exacerbating factors for my complex PTSD + medical PTSD, and related topics, but it is difficult to know what is safe and appropriate to share. But this section is pretty straightforward. And yes, I am safe. 

Dr Gupta (chat GPT) also helped me with this one.

 Carolyn, I’m going to write this in clear, grounded language — serious, but not dramatic — the way you could potentially share it with someone who needs to understand.

If at any point while reading this you feel stirred up, pause. What you’re describing is not abstract. It’s lived.

# How Frequent Daily Level 10 Pain Becomes Trauma

Severe pain is not just a physical sensation. When pain reaches level 10 — the kind that feels overwhelming, unbearable, or life-threatening — the nervous system reacts as if survival is at stake.

When this level of pain happens frequently, especially daily, it stops being a single event and becomes a chronic, inescapable trauma.

Trauma is not defined only by what happens. It is defined by the body’s experience of threat combined with helplessness and lack of control.

Frequent level 10 pain contains all of those elements:

* Intense physical threat signals

* Loss of control over the body

* Inability to escape

* Repeated exposure

* Anticipation of recurrence

When this happens over and over, the nervous system adapts for survival. That adaptation can look like PTSD.

# How Chronic Severe Pain Can Lead to PTSD Symptoms

## 1. Hyperarousal (Constant Survival Mode)

The nervous system becomes stuck in a high-alert state.

This can look like:

* Being constantly “on edge”

* Exaggerated startle response

* Difficulty relaxing, even in safe situations

* Insomnia or restless sleep

* Muscle tension

* Irritability or sudden anger

When pain has been extreme and unpredictable, the body learns that danger can happen at any time. It stops standing down.

When pain is at a level 10 repeatedly — over 100 times per day — the brain cannot reset. Severe pain activates the same survival circuitry as torture.

Hyperarousal is not a personality flaw. It is a survival system that never gets to turn off.

## 2. Flashbacks and Re-experiencing

When pain has been severe enough to overwhelm coping capacity, the brain may store those episodes as traumatic memories.

This can lead to:

* Vivid memory recall of prior pain episodes

* Physical sensations triggered by reminders

* Panic when something feels similar

* Fear spikes before activities associated with prior flares

Even if pain is not happening in that exact moment, the body may react as if it is about to happen again.

## 3. Avoidance

To prevent future pain or re-triggering, the brain tries to protect the person by avoiding:

* Physical movements that previously triggered flares

* Medical appointments

* Conversations about health

* Situations that feel overstimulating or unsafe

Avoidance is protective. But over time, it can shrink a person’s world.

## 4. Constant Fear

When level 10 pain is frequent, there is often an underlying fear:

* “When will it happen again?”

* “Will it be worse next time?”

* “Will I survive this?”

* “Will anyone help me?”

Living in anticipation of severe pain creates a chronic state of threat.

# When It Becomes Complex Trauma (C-PTSD)

If this pattern continues for months or years — especially without consistent safety, relief, or adequate support — symptoms can deepen into Complex PTSD.

C-PTSD develops in situations that are prolonged, repeated, and inescapable.

Frequent daily severe pain meets those criteria.

In addition to classic PTSD symptoms, C-PTSD may include:

## Emotional Dysregulation

* Rapid mood shifts

* Intense irritability

* Anger that feels disproportionate but is rooted in overload

* Crying spells

* Emotional shutdown or numbness

When the nervous system is constantly overloaded, emotional control becomes biologically harder.

## Persistent Feelings of Helplessness

Repeated experiences of unbearable pain with little control can create:

* A sense of powerlessness

* Hopelessness about improvement

* Feeling trapped in one’s own body

* Grief for a lost former self

Helplessness is not weakness. It is the psychological imprint of repeated uncontrollable suffering.

## Severe Distress and Identity Impact

Over time, chronic trauma from pain can affect how a person sees themselves:

* Feeling broken

* Feeling like a burden

* Feeling disconnected from others

* Feeling unsafe in the world

The trauma becomes not just something that happened, but something that shapes daily existence.

# Impact on Relationships

Living in chronic trauma affects relationships in very real ways:

* Hyperarousal can look like irritability or defensiveness.

* Avoidance can look like withdrawal.

* Emotional dysregulation can strain communication.

* Constant survival mode leaves little energy for social engagement.

Loved ones may misinterpret trauma responses as personality changes.

At the same time, the person in pain may:

* Feel guilty for being reactive

* Feel misunderstood

* Fear abandonment

* Struggle to trust that others will stay

Chronic trauma from pain can isolate people — even when they desperately want connection.

# How This State Can Lead to Persistent Euthanasia Ideation

When severe, inescapable pain happens frequently, the mind may begin searching for relief by any means.

Wanting to end one's life in this context is often not about wanting to die.

It is about wanting:

* The pain to stop

* The fear to stop

* The nervous system to calm

* The constant threat to end

* Relief from helplessness

When the brain perceives no escape from suffering, it may generate thoughts of escape in the most absolute sense.

This is not selfishness.

It is not weakness.

It is a nervous system overwhelmed beyond its capacity.

Importantly, constant thoughts about euthanasia in chronic pain are a signal of how severe and unrelenting the suffering has become — not a character flaw.

##This Does Not Mean the Person Is Mentally Unstable

A sustained wish for euthanasia in this context:

Does not automatically equal suicidality.

Does not mean impulsivity.

Does not mean a lack of capacity.

Does not mean depression is the sole cause.

It can be a reasoned response to extreme, refractory suffering.

It Is a Signal of Threshold Being Exceeded

When euthanasia becomes a constant desire, it often signals:

Pain beyond coping capacity.

Exhaustion beyond recovery.

A nervous system that has been overwhelmed too long.

A life that feels reduced to survival rather than living.

It is a threshold signal.

You described something very specific: not impulsive self-harm, but a sustained, reasoned response to catastrophic bodily decline. That distinction matters.

# The Core Reality

Frequent daily level 10 pain is not “just pain.”

It is:

* Repeated survival activation

* Repeated loss of control

* Repeated overwhelm

* Repeated threat

When this happens long-term, trauma symptoms are not surprising. They are biologically understandable.