To Diagnose Or Not, That Is The Question

“Simply put, diagnosis wields immense power. It can provide us access to vital medical technology or shame us, reveal a path toward less pain or get us locked up. It opens doors and slams them shut.”

Eli Clare, Brilliant Imperfection: Grappling with Cure

I’ve been treating my back fusion pain – burning, stabbing, tingling, severe stiffness and numbness from the waist to the bottom of my feet – as mind-body pain. Somehow I needed more information.

A generalized “mindbody” or “neuroplastic” pain didn’t adequately explain my symptoms and make sense to me. I have trust issues due to my past. I have to know all the facts before I can accept something.

My feet and ankles have been swelling and turning colors from red to blue to stone cold white since my back fusions in 2014. As the years rolled on, the swelling and inflammation grew worse. The skin would turn shiny, taunt, and painful. My toenails would shred and bleed when I tried to cut them. Here’s a photo from December 2020 during a flare:

A CRPS foot during a high-stress period

All the physical abnormalities such as swelling, inflammation, leg dermatitis, urinary retention, dystonia-like stiffness in my legs and joints, seemed to defy that the symptoms were merely error messages from the brain. The burning felt like a million fire ants embedded into my limbs. The pain and depression were so intense at times, I seriously considered taking my life…several times.

When I had an uptick in my symptoms April 2021 and I felt that mind-body techniques were failing me, I googled my symptoms, which revealed a specific pain sub-set called Complex Regional Pain Syndrome or CRPS.

One of the worst complications is the stiff, burning pain at night that wakes me every two hours. Once I learned about CRPS, I also learned how it affected circulation. I was putting the pieces together to make some sense.

As it states on the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) website, a national patient advocacy organization that provides information and support, to those affected by this crippling disorder:

“In CRPS, poor circulation impedes nerve and tissue healing. Damage to these small fibers that control blood flow causes many symptoms. Blood vessels in the affected limb can widen to leak fluid into the surrounding tissue, causing red, swollen skin. This can deprive underlying muscles and deeper tissues of oxygen and nutrients, which can cause muscle weakness and joint pain. When skin blood vessels over-constrict (clamp down), the skin becomes cold, white, gray, or bluish.”

Moreover it states: “Arterial blood pumped down to the hands and feet must fight gravity to return upwards in the veins to the heart. C-fiber damage can impede this, permitting blood fluids to remain in the limb, where the swelling then further blocks return blood flow. Slowed circulation impedes the delivery of oxygen and nutrients needed for healing and sometimes causes the spreading of cellular injury. Breaking the cycle by reducing limb swelling and restoring circulation is often the key that permits recovery to begin.”

Another indication of CRPS is allodynia. The body becomes extra sensitive to touch, pressure, clothing, movement, air, temperature, and more. For example, I’ve had allodynia since the back fusions in 2014. I can barely tolerate touching my lower back or my thighs. I recently saw a vein doctor and could barely endure the gentle pressure of the ultrasound on my sore legs

Before learning about CRPS, I was instructed to tell myself that I was safe, that I could not possibly hurt myself while sleeping, that I should not worry about things until the next day, that if I dreamed, I didn’t want my brain to wake me. Yet, I woke up every two hours in horrendous pain night after night with terrifying bodily changes from swelling to inflammation, from color and temperature changes to incapacitating pain. It looked physiological to me. I definitely needed more information.

As Drew Coverdale explains in his book, “The Pain Habit,” “These three things — uncertainty, a lack of information, and a loss of control — trigger the stress response in any human (Ursin, 1978).

Next, I read the book, “Why Are My Nerves So Sensitive,” by Adrian Louw: He writes: “There are sensors in your nerves that are sensitive to the amount of blood around your tissues. When blood flow slows down slightly, after not moving a body part, these sensors “wake up” and make the nerves sensitive.”

Upon learning all this, my first thought was about Dr. Sarno. I think this is the pain he saw in patients when he determined that lack of oxygen caused pain that was as bad as cancer pain. A quote from his book, ‘The MindBody Prescription” (p.79) confirmed the CRPS pain:

“This malady is characterized by pain, swelling, tight and shiny skin and bone abnormalities that can be seen on X-ray. It may involve one or more limbs and tends to be extremely disabling. The symptoms and physical findings on examination are said to be caused by excessive discharge of sympathetic nerves, resulting in a widespread reduction in blood flow and oxygen deprivation. It is similar to what happens with TMS but is more severe and involves muscles, nerves, tendons, skin and bone.”

The pieces of the puzzle were fitting together for me.

Many current mind-body doctors have dropped Sarno’s idea about oxygen deprivation, convinced that neural circuits in the brain are the culprits, but I know much of my leg pain is due to a lack of oxygen & circulation that improves some after I move or walk…at least for CRPS.

Once I had a specific diagnosis, I stopped worrying about all the physical changes. CRPS meant my nerves were extra sensitive. The skin and color changes were physiological, but they did not have to frighten me. I was plagued with one pain condition, not ten other health issues to worry about.

Uncertainty fueled pain. Getting a correct pain diagnosis reduced my fears. Mindbody techniques help a person reduce fear. Because my stress was reduced, the inflammation in my feet subsided.

Now, my foot can look like this, but when I get stressed, it can swell and turn crimson red within hours. Understanding made the symptoms less concerning.

The MindBody Approach

So how exactly is CRPS considered a mind-body disorder which claims to hurt but not harm?

CRPS is a cunning nervous system disorder – a malfunctioning of the sympathetic nervous system (fight/flight turned on and won’t turn off)- which can also affect the musculoskeletal system including the tendons and ligaments, the body’s internal organs such as the kidney and heart, and the autoimmune system. Stress exacerbates any disorder or disease. Mindbody techniques can reduce pain and anxiety.

It’s understood that mindbody or stress-related disorders are caused not by organ disease or structural abnormalities, but by neural circuits in the brain that activate the fight or flight response that create very real painful sensations. People with high levels of both past and present life stress are most likely to experience mindbody pain through no fault of their own.

Dr. David Clark, head of The Psychophysiologic Disorders Association (PPDA) and author of “They Can’t Find Anything Wrong!” had this to say about CRPS on a YouTube Webinar:

“The success rates with CRPS seem to be less, not because the diagnosis is incorrect, but because those individuals are struggling with very powerful levels of stress,” insists Dr. Clark. “But I’ve had patients who have been ill for decades with psychophysiological disorders that have made excellent progress.”

Call me a skeptic, but how does he know for sure that mind body is the correct diagnosis for CRPS? How does he know for sure that psychological issues cause CRPS?

Dr. Clark continues: “Those who were made to feel like a second-rate person, who had to work hard to get parental approval or had trouble getting any kind of attention wouldn’t seem to be considered a big “T” trauma, but it had the same long-term impact. Don’t discount that kind of treatment as a big trauma.”

He suggests that you recognize where your powerful emotions are coming from. “The roots of anger, fear, shame, and guilt can be found in your childhood. Write about them and the feelings toward the people who perpetrated them.”

Clark adds, “You did a remarkable thing to survive what you went through. Realize that what you went through is a hero’s journey. Years can go by between the onset of stress illness and the trauma that triggered the illness. There might be a stressful event that triggers that original trauma.”

OK, now I felt like he was talking directly to me with those last comments.

However, the National Institutes of Health offers several explanations for CRPS:

The diminished blood flow may be caused by either sympathetic dysfunction, hypersensitivity to circulating catecholamines, or endothelial dysfunction. The pain may be of neuropathic, inflammatory, nociceptive, or functional nature, or of mixed origin.

Is mindbody for CRPS the right diagnosis? Right now, I’m unsure.

Thinking of Joining A Support Group?

Interestingly, a mind-body Facebook pain site actually removed my comments after I asked a member if she had CRPS. A therapist who works with pain patients and monitors the site accused me of medicalizing their members. In the mind-body world, “medicalizing” means you are told by the medical professionals that structural anomalies, such as herniated disks, bone-on-bone osteoarthritis, scar tissue, etc., are causing your pain when they are not.

On the contrary, the very thing that helped reduce my fear was to have the specific diagnosis of CRPS. My comments were removed from the pain site, suggesting I would scare people by labeling them.

It’s been my observation that some Facebook groups become similar to personality cults. Members look to the leader for all the answers and treat them like their own Jim Jones. They pass on the words of the leader like lemmings. They are so rigid in their beliefs, they stop thinking for themselves. Worse, they stop asking questions. They toss the baby out with the bath to defend their methodology.

Be selective about which groups you join. Any pain group that refuses to allow you to explore specifics and knowledge about your pain is suspect in my opinion. I lost my confidence in that particular group. As far as I’m concerned, knowledge is power.

I personally find a lot of support in the Facebook group Positivity with rsd-crps.org. It is administered by a nurse who reviews books on neuroscience through a live feed every night at 9:00 EST. However, there are several good groups that will help you understand CRPS more fully without medicalizing you.

CRPS is referred to as “the suicide disease.” It should be talked about. It’s very important that sufferers feel heard. Like pain, the truth might hurt, but it’s not harmful.

The one thing I know for sure: The right diagnosis is everything.