Good info on extinction bursts and plateaus

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%?

 

Wow, that's very good and well written! A lot to sink in.

I like Helmut's philosophy about it, he says every new day is one day less towards your recovery. Even if you throw the towel and have the worst thoughts you can think of, it's still learnship and the thinking you develop when you get out of it is made of new sinapses in your brain that will bring healing closer.

But then it raises the question: what is 100% recovery? I imagine everyone suffers from nervous system sensitization to some degree, after all pain is an interpretation. So I guess we're talking here about having the life we had before, symptoms speaking. But is this possible? TMS healing changes who we are and how we think about our sensations. Maybe "100% recovery" is just the old perfectionism in disguise.

 

LOVE this!!!

 

@TG957 's book helped me so much with mindset, feeling OK about my personal wellness journey, knowing that the "work" never ends and that we need to keep awareness of who we are and how TMS manifests in us for a lifetime, that symptoms are never just physical - but emotional, in thoughts, perceptions, fears etc. it's ALL the same as a physical symptom and we can overcome them.
It's gold!

Love to see your smiling face @Diana-M !

 

I also Read @TG957 's book recently.
I had some shared symptoms and I absolutely did not want to go to a Dr., as seeing one was what triggered the symptoms It was helpful to make a strong identification with the 'inside' battles of a fellow.
It was also a little satisfying to read someone with as much disdain for the medical system as myself (LOLOLOL)

 

Right there with you both!

 

Love you guys!

 

One may ask a question: How do I distinguish between an extinction burst and a permanent worsening of my condition?

Well, I believe that a misunderstanding of an extinction burst and refusal to view it as a temporary condition would inevitably lead to the permanent worsening of the condition. There is only one difference between the losers and the winners: losers decided not to think a little more and give it another try.

 

Ditto!!!!

 

Thanks @Diana-M for sharing

I had a pretty bad setback today which I think is an extinction burst

Woke up with a tension headache & neck tension and decided to go on with my day anyways

As I went out while driving & my headache worsened and tension spread into my face - around my eyes, cheeks, and jaw

Mildly irritated, I dismissed the symptoms as TMS and continued to move on with my day

THen while shopping in a crowded market area my symptoms worsened, I really needed to go home and fear started setting in - why are my symptoms acting up again with such intensity? What if I didn't make any progress at all in the last year?

I drove home, frustrated and suffering from my symptoms of tension. After getting home and lying down for an hour, my symptoms subsided along with my anxiety.

 

Hi, @hikko
You know, it’s hitting me that we all spend so much time thinking about every single nuance of our physical well-being and we get extremely scared when symptoms flare —but the truth is this is a mental battle. We are literally grappling with a primitive lizard brain (TMS brain) to get control of our bodies and it’s a mental fight. It’s hitting me so hard that I’m going to have to get much much tougher mentally to fight and win this battle physically.

You were out living. You weren’t caged up. Your lizard (TMS brain, with the motives and understanding of a lizard) said, “no you don’t! Get back home! Crawl under a rock.”

@hikko —Who’s in charge of your body? Big brain (you) or little brain (lizard)? ( I’m using this as a pep talk to myself, also!)

We have to keep on. Ignore symptoms and LIVE!

 

"I drove home, frustrated and suffering from my symptoms of tension. After getting home and lying down for an hour, my symptoms subsided along with my anxiety"

Isn't this all the proof you need about your brain trying to protect you from "hard" or "unsafe" things by keeping you swaddled in cocoon of aloneness?
You did really excellent just going out there and doing it all. Next time, you'll remember that this is just your brain, and perhaps you'll have less fear and anxiety. You just keep going, and perhaps the next time you can find some little thing to enjoy as you are out, and then you can tell your brain with 100% truth that you are FINE and enjoy going to market and can do hard things and are SAFE. Notice if it is your thoughts that spark the anxiety, and not the actual physical symptom. Most of us think that we aren't experiencing anxiety until we feel a symptom, but I guarantee that the anxiety is the precursor and the symptom is simply the last physical reaction you sense before noticing the anxiety. If you can recognize the anxiety earlier (which for me feels like anticipation, especially before I do activities) notice what sensations you have in your body that are not symptoms. Perhaps a "buzz" like extra energy, clammy or sweaty palms, maybe lots of smiling or facial tension, temperature changes of the body, feeling like you need to move or perhaps just stop and turn around - all of it. Notice it before and and see how your body expresses itself.
Simply noticing has given me so much awareness of where anxiety lays in my senses and it has made me much less afraid when any symptoms arise because I see them all simply as my body expressing the things I am feeling and thinking.

 

Yes it's 100% anxiety, recently I've noticed it's either a headache or extreme anxiety. Maybe symptom imperative at work. My brain gives me a headache to suppress the overwhelming anxiety.

I went out again today and experienced it all over again, using awareness I am pretty sure the symptoms started before any thoughts. I've become quite good at quieting my inner critic and being self compassionate in these moments. However the sensations are extremely overwhelming to be honest. My eyes become unable to focus , forehead & palms sweaty, I can hardly look up and get an extreme fear of eye contact with others. My entire upper body espeically my neck, shoulders and head becomes filled with a sense of tension. My throat becomes locked up and I can barely talk. I know my nervous system is 100% overreacting but my brain doesn't seem convinced yet.

I plan on going out again tomorrow. My understanding through reading books such as Claire Weekes is that the only way out is through exposure.

 

So sorry you are experiencing such miserable symptoms. It really is hard and scary and I feel you. I have different symptoms, but just as scary. You found the solution! Claire Weekes. Keep it up!