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.

 

Awesome, I'm 6 months in and feel myself going backward and falling into the old traps.
its tough finding work at present and under pressure from friends,family etc but my perfectionist says I must get better before I can be a good employee as I view the pain as limiting my ability to perform. incredible logic or what?
all these stories make such a difference, so thanks!

 

Ellen, thank you for sharing your story. I "felt" your courage in reading it. Very powerful testimony. I wish you peace and joy.

 

Thank you so much, Ellen, for your generosity in sharing your story and what helped you. You are an inspiration!

 

Ellen, this is a great success story with many great pearls of wisdom for all those who want to know how to recover from TMS. I too believe you can recover but not cure. So many of us have relapses or deal with TMS equivalents like the ones you mentioned above. I consider these an opportunity to make needed changes in my life and relationships.

 

Ellen, LOVED hearing your story. I can relate to so much of what you've gone through. And like you, my TMS started as a young child.
My recovery comes in sputters, fits and starts. The past few days, I have walked with nary a twinge of pain in my ankle. (Or course, my anxiety's been off the charts, but I digress ) So yes, the TMS recovery is anything but a clear linear path.

Rock on my friend! You're awesome and your story is inspiring!.

 

Ellen; I`m not quite a year in and still looking forward to recovery and stories like this really help me. This is one of the best I have seen. THANKS.

 

Thank you Ellen for your success story. There is a lot of valuable information
For us who are not there yet.

 

Hello Ellen,

Thank you for the detailed description of your TMS journey and recovery. Congratulations on getting so far!

I am fairly new to the TMS approach of dealing with pain. It makes perfect sense to me and I was able to get rid of back pain but I've had abdominal pain for a year and a half and it's still persistent. I think that deep down I still believe I have a physical issue, no matter how much I'm convinced by the mind-body connection. It seems I'm still struggling with conditioned pain and habitual thinking. It's so hard for me to break this and I believe my obsession over it is just further enhancing my thinking patterns. Do you have any suggestions on how to move past this?

Thanks again.

-Z

 

Hi Z,

Congratulations on getting rid of your back pain. Sometimes it can be harder to get rid of the symptoms that arise as part of the symptom imperative, but don't give up. Recovery is possible.

As I said in my success story, I never had any doubt that my symptoms were TMS, so I can't be much help in overcoming that obstacle. It seems that an Evidence Sheet is helpful to most people struggling with this issue.

As for overcoming the conditioning and habitual thinking patterns that are causing stress--awareness is the first step, which it sounds like you have. Mindfulness meditation really helps strengthen that part of your brain that is the observer. That observer is wise and knows the truth, and can "talk" to the part of your brain that is reacting in a conditioned pattern. Repeatedly have that part of your brain tell your unconscious that there is no reason to have TMS symptoms in response to X. Eventually it overrides the unconscious. Same process with stressful habitual thinking. Repeatedly just say "stop, this thinking is only causing me stress" and then shift your focus. It takes repetition, practice, and patience. But it can be done.

Best wishes on your recovery journey....

 

Ellen!! Well we've waited a while for this but boy was it so worth the wait I've been following your journey since I started skulking on this site in late 2012 and recall your early frustrations with healing. You've structured your advice so wonderfully well above, so those of us at different stages of our own recovery can tune in and relate. I'm so pleased you've taken the time to write your story. It will help countless others in their journey. Undoing your pain would have taken time, but what you've demonstrated to us all is that a calm and patient approach (with unwavering belief in TMS) has got you to where you are now.

Congratulations Ellen for your success and thank you for your tireless efforts in helping others on this site. You're a treasure.

 

Wow Ellen, I'm absolutely thrilled for you. I haven't been on the forum for a year or so, I just dropped in when a member began a conversation with me. I've given myself a slap on the wrist for not posting my own success story and promise to sit down to do it soon.

Your story will give so many people a massive boost in confidence to keep going. You're an inspiration, you've helped so many others along the way.

Much love Mermaid

 

very comprehensive post Ellen.........thank you for taking the time to pass this info on.

 

Ellen,
Thank you for making your post so thorough, it is exellent.
Right now I am very overwhelmed, by experiencing growth, feeling more emotions, some agitation when I can't quite let a feeling in, all kinds of new stuff. However, I am becoming, for the first time, aware of being present (some, anyway!) and not "being in my head" so much. There is progress, and it is sure amazing. I am just getting started, and am beginning to understand things I thought I understood, but didn't. I think a lot more will come.
Lizzy

 

Thank you for your kind comments, Mermaid. I have missed your wise and compassionate voice on the Forum. I'm looking forward to reading your Success Story. I know it will provide hope and inspiration for many.

 

Thanks Ellen so much for taking the time to write such a detailed success story. Your posts are always thoughtful and worth reading. I completely understand when you say to recover from your fibromyalgia is like a miracle. How wonderful for you. Good luck in your continuing journey.

 

Thank you for taking the time to write such detail on your story and success. You caught my attention since my greatest problem at this time is my daily migraines and Fibromyalgia... Although, I suffer from many other illnesses including a rare life threatening one came Superior Mesenteric Artery Syndrome.
I am now in the process of reading, seeing a couple physicians who believe in TMS, and trying to complete the book, Unlearn-Your-Pain-Second-Edition.
I have read several other books and articles. I hope to learn more from you on how to retrain my brain...
Any advice will be greatly appreciated...

 

Janis, congratulate yourself for giving this a go. You will find this place extremely helpful...just don't expect miracles overnight. It's a tough cookie to crack for some, hopefully you are one of the quick learners!

 

Thanks, Irishsceptic.
I've been fighting migraines for fifty years, and the other illnesses for five to ten....I am expecting this to be quite a journey. I only hope it's easier than I think to get some relief... I'm getting so exhausted from fighting so long, and so hard....

 

Wow! That's incredible. Did you read the Oprah piece on migraines? Wish you all the best and given you have tried every possible avenue(Iassume) sounds like you've finally cracked it!