1. Alan has completed the new Pain Recovery Program. To read or share it, use this updated link: https://www.tmswiki.org/forum/painrecovery/
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Recovery from 20 years of fibromyalgia and a lifetime of migraines
It is my two year anniversary of learning about TMS and I realize I still haven't written out my success story. This is not because I'm without success, but due to my perfectionism I thought I needed to wait till I was free of all vestiges of TMS and TMS equivalents before declaring myself a "success story". However, I now see that the success I have had in recovering from my major TMS symptoms of decades of fibromyalgia and migraines may provide some inspiration and hope to those with similar conditions. Even though my recovery from these conditions is over a year old, it still feels like a miracle to me. Yet, I know that it was really no miracle, but came about through persistence, hard work. and the patient application of the wisdom and strategies that so many other former TMS sufferers have shared through their books, blogs, and thoughtful, compassionate posts on this Forum. I hope my summary of what worked for me will be helpful to others as well.

My TMS Story:

I learned about TMS when a video by a urologist, Dr. Eric Robins, appeared for no apparent reason on my phone. In this video Dr. Robins talks about how he had fibromyalgia, describes the philosophy behind TMS, and how he recovered. He names several resources that he found helpful, which I quickly jotted down. The first one I investigated was Unlearn Your Pain by Dr. Howard Schubiner, and from that book I learned about Dr. John Sarno and the tmswiki. I knew within reading a few pages of TMS theory that it explained all of the physical pain and other symptoms I had endured throughout my life. Embracing the diagnosis was never a problem for me.

At the time that I learned about TMS, I was feeling very desperate about my health situation and thinking that I would most likely have to quit my full time job and file for disability. I was in intense pain all over my body, but especially in my shoulders and neck, despite taking the maximum dose of the pain medication Tramadol 24/7. I was having migraine headaches almost daily even though I was taking a beta blocker to prevent them every day. The Trazodone I was taking nightly for insomnia wasn't working anymore and I had to take Ambien most nights in order to get any sleep. And I had developed a new symptom of extreme sensitivity to light which made my job that involved looking at a computer screen all day almost impossible. After starting the journaling in Unlearn Your Pain, I figured out that what I was reading on that computer screen every day was triggering repressed emotions about my difficult childhood and causing all of my chronic TMS symptoms to flare up to the point of almost complete dysfunction. I was barely able to crawl through my day, and was completely isolated and trapped in the fear that I would no longer be able to take care of myself.

I was at a loss for what to do about my situation, since over the last 20 years of having fibromyalgia I had endured many treatments without success, and at significant cost both financially and professionally.The difficulties and side effects of many of these treatments are still too painful for me to write about. I tried the usual array of traditional medical treatments and alternative treatments. At one point I even enrolled in a Master of Oriental Medicine program, thinking that acupuncture and traditional Chinese herbs could be my salvation. After completing 2 years of the 3 year program and undergoing countless acupuncture and herbal treatments, I was no better. So I dropped out of the program. If I couldn’t cure myself, how could I help others.

I had my first migraine headache when I was 4 years old. Several months prior to this I had experienced a traumatic playground accident that almost resulted in losing my right arm (I am right handed). Fortunately, through intense medical intervention in the following months, my arm was saved and I have had full use of it throughout my life. Though I don't remember a lot of the details of that time in my life, what I do remember makes it clear that it contributed to the beginning of a lifetime of TMS for me, starting with that first migraine headache. I lived in a family that did not tolerate the expression of strong emotions and embraced the belief that providing comfort to a scared child would only encourage self-pity and malingering. It was made clear to me that I had to hide my emotions and cope with this trauma on my own. This lesson was reinforced in many ways throughout my childhood. Thus began a lifelong pattern.

Over the years my migraines became more frequent. As an adolescent insomnia and depression became problems, as well a multitude of inexplicable symptoms that came and went, which I now know to all be TMS. In my 30's I developed chronic pain that became severe on a regular monthly basis dependent on my hormonal cycle. This was finally diagnosed as Endometriosis and I underwent a complete hysterectomy at age 37. This felt like a miracle to me, as I was pain free for the first time in a decade and no longer on the hormonal emotional roller coaster I had endured. However, about 6 months after my surgery, I developed all the symptoms associated with fibromyalgia and chronic fatigue syndrome, and my migraines became more frequent and severe. Clearly this was the symptom imperative at work. Surgery is never more than a temporary escape from TMS.

How I Recovered:

As I mentioned above, my first book on TMS was Unlearn Your Pain and I realized within the first few pages that TMS (or Mindbody Syndrome as Dr. Schubiner describes it) explained all of my chronic pain and other health conditions over the course of my life. I actually experienced the "book cure" and spent about a week symptom free. I was elated and could hardly believe this was possible. However, I was still taking the maximum dose of Tramadol for pain I no longer had. I knew I needed to stop taking it, but that I would need to do it gradually as I had been taking it for 15 years. As I started cutting back on the pain medication, my symptoms flared up again; plus I experienced new symptoms related to medication withdrawal. So much for my "book cure". It then took me about a year to get back to a pain-free level. I firmly believe that if I can do it, anybody can. Below is the strategy that worked for me.

If the purpose of TMS is to distract us from emotions that the unconscious has determined are unacceptable to our conscious brain, then it made sense to me that the primary treatment strategy is to take away its purpose by (1) not letting TMS be a distraction; and (2) demonstrate that these emotions are acceptable to the conscious brain.

However, even after we accomplish these two points, many of us will still have TMS due to conditioning and habitual patterns of thinking and behaving that create stress and tension. And some of us may have a highly activated nervous system from chronic stress or PTSD that has to be addressed as well.

Take Away the Purpose of TMS

1. Don't let TMS distract you or define who you are

* Acquire knowledge about TMS and TMS theory to reduce the fear of your symptoms.

* Use the logic and reasoning your conscious brain has derived from this knowledge to "talk" to your unconscious. (e.g. "I am healthy and strong and there is no reason for me to have pain.")

* As much as possible, go about your life doing everything you need and want to do despite your TMS symptoms. Try to never use TMS as a reason not to do something.

* Don't feed your perception of yourself as a disabled person by talking about your symptoms to others. (Except to offer support to other TMS sufferers.)

* Do things that change your perception of yourself to being an active, healthy person (e.g. exercise, sports, yoga, dance)

* Realize that you are not fragile and don't need special equipment, diets, supplements, routines, perfect weather, etc

* Accept that it is OK to have pain. Your brain is sending you a faulty signal. TMS pain can't hurt you, and you can push through it. (see my post on how Hatha Yoga helped me understand this.)

* Realize you can still fill valued roles despite having TMS (e.g. as an employee, spouse, parent, friend).

* Create positive distractions that get you out of your head and your "story of pain". Shift your focus outside yourself (e.g. other people, nature, pets, absorbing activities).

* Practice mindfulness to remain in the present.

* Use guided meditation to cope with intense pain if you can't be distracted from it or push through it. (A free one is the "Soften, Soothe, and Allow" meditation on this site.)

* Don't let "working on my TMS" be the new way TMS distracts and defines you. Limit time spent to no more than about an hour a day. Use a structured program to have daily activities, then put it away.

* Beware of the symptom imperative. When a new symptom arises, ask yourself if this could be TMS. It probably is, and must be treated the same.

2. Demonstrate that all emotions are acceptable

* Use expressive writing/journaling and dig deep to uncover difficult, dark, disturbing emotions; past painful events; internal conflicts; personality traits; defense mechanisms; dysfunctional patterns; current stressors, etc. Lay it all out there with complete honesty. Hold nothing back. Tear it up afterward if you are afraid someone will find what you've written.

* Tell your brain, "I'm not afraid of any of these emotions. I'm willing to look at everything and accept them all."

* Don't become obsessed with finding THE repressed emotion that will free you from TMS. In my opinion, this is about demonstrating to the unconscious that all emotions are acceptable to the conscious and are not to be feared.

* Talk to a psychotherapist if needed.

* After digging up painful emotions, always use the antidote of telling yourself that you are human and these are normal human emotions. Tell yourself, "No one is perfect. I am entitled to feel the full array of human emotions."

Address Conditioning and Habitual Patterns

* Use the logic and reasoning of your conscious brain to override the unconscious. For example, I was conditioned to get migraines when the barometric pressure changed. When I could feel those beginning twinges of a migraine in response to this, I told myself repeatedly, "There is no reason that a change in barometric pressure should cause a migraine. So stop it brain!." This eventually worked.

* Develop your awareness of behavioral habits that create stress and tension and use mindfulness to address them. For example, I realized that I had this habit of hurrying from one thing to another throughout my day, and that this was causing tension in my shoulders and neck. When I would catch myself doing this, I would take a deep breath, sink into the present moment, and complete my task mindfully, almost in slow motion. Eventually, I broke this habit and my last 10% of TMS pain in my neck and shoulders finally went away.

* Develop awareness of your habitual thinking patterns that create stress and tension, and employ strategies to change (e.g. the inner bully, ruminating on past or future events, negative thinking, catastrophizing, etc.) [This metaphor of thoughts being like a train has been very helpful for me: Thoughts are like trains arriving at a station and you can either watch them arrive and depart, or you can jump on board and go where they lead. If they lead you to a place of stress and tension, you can just jump off the train.] The practice of writing three things that I'm grateful for at the end of each day has helped counter my tendency toward negative thinking.

Address Highly Activated Nervous System and Trauma

* If your fight or flight response seems to be stuck in the on position, the following techniques have been most helpful to me: deep breathing (see 4-7-8 breathing technique); guided meditation for progressive relaxation; yoga (the ultimate mindbody exercise); practicing mindfulness.

* It is my experience that this is most effectively addressed through the body. I can tell myself "I'm perfectly safe" all day, and it doesn't seem to help me become calm.

* If you have experienced significant trauma in the past, receiving therapy from someone trained in using mindbody techniques to address trauma and PTSD may be necessary (e.g. EMDR, Somatic Experiencing).

Stop Medications (when you are ready)

* If you are on multiple medications for your TMS, I suggest stopping only one at a time. I first gradually weaned myself off of the Tramadol, then about 6 months later I gradually stopped taking the beta blocker. I had significant withdrawal symptoms both times, but I had taken these medications for 15-18 years, so it was a big adjustment for my brain.

* Discuss this with your doctor, but wean yourself off as gradually as you need to.

* Know that reducing and eliminating medication may cause your TMS to flare up as your brain adjusts to the change. Tell yourself that these symptoms are temporary and that it doesn't mean that you need the medication to be symptom free.

Dealing with Relapse

* Accept that it is likely that even after you have eliminated your TMS symptoms you will experience either a relapse of the old symptoms, or a new form of TMS.

* Remind yourself that overcoming TMS is about recovery, not cure. It is very easy for our brains to fall back into those old neural pathways.

* When a relapse occurs, stay calm and get back to the basics. Ask yourself why you need a distraction right now.

* Don't become obsessed with finding the exact reason for your relapse. Go back to reading, journaling, or restart a structured program, if needed, but limit your work on TMS as in the beginning.

* Don't catastrophize. Having a relapse doesn't mean your recovery has failed, and you will now have these TMS symptoms forever. Remind yourself that you overcame TMS before and you can again.

My TMS journey continues as I'm addressing some stubborn TMS equivalents (insomnia, fatigue, allergy symptoms), and still working on eliminating my final TMS medication of Trazodone. I am confident I'll recover from these symptoms as well. And I thank all of you on this Forum for your continued support and advice as we work together to let go of the past, and live our lives fully in the present moment. Namaste.