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This is a long post, but if you need it, you’re going to love it! It’s from a book written by a forum member @TG957 – who recovered from a debilitating medical diagnosis of complex regional pain syndrome. But really she had TMS. I read her book often for inspiration, because many of my symptoms are like the ones she had. And because it’s easy to get discouraged.

from— Defying the Verdict, How I Defeated Chronic Pain, by Tamara Gurin, pp. 114-119

Non-Linear Recovery and Extinction Bursts

One of the most important things each TMS-er needs to learn and memorize well is that your recovery, unless you are one of the very few lucky exceptions, will not be linear. You will experience what Dr. Sarno called “extinction bursts,” which are explosions of symptoms in random places. The explosions may or may not match your main symptoms. They may make you feel stuck and throw you back into the state of despair.

I dare to say that I do not agree with the explanation that Dr. Sarno gave to the cause of extinction bursts, but his observations and even the term itself match my experiences precisely.

For example, about four months into my recovery, I woke up one morning with a severe pain in my right upper back. Muscles in my neck, shoulder, and part of my back below the right shoulder blade were not only incredibly painful, but also locked up in a powerful contraction so strong that they felt paralyzed. I could not sit up in bed, had to roll onto my stomach, and then carefully slide down onto my knees on the floor near my bed. I could not use my right arm for at least an hour. Slowly, I was able to compose myself and started working through the muscles, stretching them one by one, until I was able to take a shower and get dressed. I was able to go to work that day, and by the end of the next day everything was nearly back to normal with my upper back. At first, I was terrified, but quickly remembered Dr. Sarno’s warning and was emotionally prepared to deal with an extinction burst.

Extinction bursts masquerade themselves in various forms and shapes and can puzzle and scare even a very experienced TMS-er. Nearly two years into recovery, I was leaving a grocery store with a heavy bag in my left hand, when suddenly my left thumb tensed up, turned into a straight unbending stick, and started pulling toward the rest of my fingers, eventually resting on top of my index finger in a bizarrely unnatural twist. It surely looked broken or dislocated. The force of my tendons and ligaments was such that I could barely pull it back with my other hand. My forearm felt the tension almost all the way to the elbow.

By then, I knew well not to worry. Moreover, the less I worry, the sooner I can get over the burst. I sat down in the car, closed my eyes, and started meditating. It was not easy to concentrate on meditation in the noisy parking lot. Adding to the difficulty was that for a couple days prior, my anxiety levels were higher than normal (another sign of extinction burst!), but after about five minutes of meditation, my thumb slowly relaxed and travelled back into its place. I drove safely home and soon forgot about this little incident. Had it happened to me earlier, in my less TMS-educated times, I would have been scared and fed on my fear for days after the incident.

For a while, on and off, I was getting quite bad and painful muscle cramps in my legs. I had never been prone to muscle cramps before. I quickly understood that muscle cramps were just another form of extinction bursts. Yet, driven by panic and information from medical websites, I asked my doctor to give me a referral to test the level of magnesium in my body. Even before the test results from the lab were back, the cramps disappeared. Tests showed normal levels of magnesium. I laughed at myself and slowly learned what to do about cramps. When a cramp attack happens, I try to relax the muscles, go into a meditation, and breathe. It helps much faster than twisting or shake my cramped limb in frustration or getting upset and worried. Believe me, I’ve tried it both ways.

One extinction burst was especially difficult. As pain in my wrists started receding about four months into recovery, it re-appeared in my arms and legs. After a while, a dull, continuous pain spread into the buttocks and upper back, and I started to suspect that I had developed fibromyalgia. This one lasted for several very long months and was quite difficult for me emotionally and physically, since my energy level dropped again. I started to fear that I was losing my battle with CRPS and was acquiring yet another incurable illness. Fortunately, after a while, this dull, unending muscle pain started slowly going away and completely disappeared about six months later.

Anxiety and depression are very common conditions for those with TMS. Our personalities lend themselves to both emotional disorders. Be prepared to see a rise in anxiety and/or depression during extinction bursts, even if you consider yourself generally free of both. They are an emotional mirror of your pain symptoms and are inexplicably linked to your chronic pain, your muscle spasms – and however else your TMS is manifesting itself.

One may ask a question: How do I distinguish between an extinction burst and a permanent worsening of my condition? It is a complicated question that I can only answer with confidence for my specific case. I experienced dozens of sudden rises in symptoms, specifically in pain level, muscle spasms, anxiety, and depression. I would be lying if I claimed that it never worried me. I panicked many times, especially when symptoms persisted for more than two - three days.

Eventually I learned not to panic – see more in the section Faith and Doubts.

Much harder than extinction bursts were plateaus, maybe because they were not explicitly mentioned in Dr. Sarno’s book.

Plateau

As I moved through my recovery, each extinction burst was followed by a slight improvement in symptoms and then a plateau, when progress seemed to stop. A plateau could last for a month or six months. During those times, I did not see any improvement. Those were the hardest.

After a few months of anxiously waiting for any progress, I would start to worry. What if it would never get better? What if I would forever depend on Topricin to make the fire ants stop crawling through my hands? What if I would be forever stuck not being able to write my signature, let alone a birthday card, to hold my hand flat against the table, to shake hands with people, to snap my fingers? Would I be ever able to do a handstand again?

As I put timeline of my recovery together, I noticed that those plateaus coincided with the irrational things that I did. It was during those plateaus that I signed up for expensive, yet useless treatments that I did not need and tried various vitamins and diets. And each time, after a few days or weeks, I would calm down, and unfinished bottles of food supplements would become another casualty of my anxiety over my illness.

As I write this chapter, I am in the longest plateau to date. It has been at least ten months since I recorded my last noticeable improvement, being able to snap fingers on my right hand. The prior longest plateau was almost five months, after fingers on my left hand finally produced a perfect snap at the end of July 2017. While in the plateau, I was able to finally get into a handstand, increased number of push-ups I could do without resting to 20-25 and returned to my normal lifestyle – meaning that dystonia is no longer front and center of my daily experiences. In TMS-speak, not worrying about achieving full recovery is called outcome independence.

My hands are back to the level of dexterity before CRPS, but they are still a bit puffy and my middle fingers still feel slightly numb. I can’t help it, but every once in a while, I get concerned whether they will ever close that 1% gap to perfection. I wonder if I will get to the point that I no longer care about whether I have the symptoms or not - maybe then I will recover 100%?