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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Discussion in 'Support Subforum' started by azacarmical, Jun 10, 2015.

  1. azacarmical

    azacarmical Newcomer

    I just wanted to share my story and it sounds like some of you all stories in this forum.

    In July 2013, I had an ectopic pregnancy after trying for 5 years with 4 IVF cycles and at all IVF clinics in my city.

    In October 2013, I woke up one morning and could not open my jaw more than a finger wide. I have always had jaw clicking and have been diagnosed with TMJ. For 3 months, I could only eat soft food. I spent $4000 having CT scan, e-stim on my jaw, myelograph and ended up having my teeth shaved to 'correct the bite'. I also started seeing chiropractors for 3 months to 'correct my spine alignment' because I was afraid the TMJ would come back. I noticed during this time I was having pain in my right bicep.

    Jan 1, 2014, my whole face started twitching. At the time, my husband and I were going to attempt to do our last IVF cycle with our last two embryos. I also was going to get braces during the same time before our last IVF cycle because I was afraid if I did have to get braces during the cycle i would be in pain. 2 weeks prior to the cycle (I had already bought all RX meds for my cycle) that's when everything started going downhill. My eyes and jaws started twitching. I started freaking out, and scheduled an appointment with a neurologist the very next day whomever was available at the time. I canceled my IVF cycle. Oddly enough when I saw the neurologist, the jaw and eyes stopped doing what they were doing when I was alone. The neurologist ordered brain and cervical spine MRI. However the results wont be available until next week. So i started googling online what it could be and 'dystonia' a very serious neurological disorder where the jaw would get stuck in clenching position. I started mimicking the symptoms that I read online the next day, my jaw would not stop moving, so I did what the patients of dystonia advised online, which was to put a straw between my lips the whole time even at work and between my lips because having TMJ I feared that i would clench my jaw and made my TMJ worse. Then two days after that, my hands and legs started shaking and I ended up going to the ER. My hands would not stop shaking until two neurologists came in. Weird that they stop shaking. They said I was stressed and I got so angry at them for telling me that. They sent me home that night and told me to take two potassium pills the next day because they said I was having muscle spasm and my potassium was low. So I believed in my heart at the time the low potassium was what caused all the shaking and twitching, and believe it or not, I started eating potatoes (high in potassium) every meal. Few days after that, i got my cervical spine and brain MRIs results. Brain MRI was normal but cervical spine MRI showed c5-c6 left side was bulging, and c4-c5 right side was ruptured.

    Jan 15, 2014, I two weeks off from work because I wAs googling symptoms online again about cervical disc herniations and I picked the most severe symptom which was spinal cord impingement and foot drop and I started mimicking that the very next morning. I started giving my husband my death wish as if I was going to die soon. For the next few days, I just laid in bed because I could not see a rehab orthopedic doctor until after a few days. Few days after, I was able to see the doctor and she gave medrol and Rx for PT. I felt better after taking medrol (all symptoms went away like upper back, middle back and bicep pain) until someone in my family said 'yeah that's what steroid supposed to do just get rid of inflammation'. I started getting worried again and scheduled PT asap like it was going to fix me right away. I felt better during PT but after that the pain in my back came back. Strangely enough it was my middle back that hurt and left arm and waist (?????) it was weird thinking about it. I had two steroid injections in both sides of my neck, which worked ok for two weeks then the pain in my middle back and right scalene and chest came back. What i was dissappointed was I marked these pain areas when I saw the rehab doctor. Not a single time did she mention that the pain areas did not match my disc herniation levels. I had pain in my last left three fingers when the left c5-c6 should cause numbness on the thumb. Then right side c4-c5 should affect the deltoid but i felt pain in my bicep. When two steroid injections did not work i asked to see a surgeon. He was one of the top surgeons at Emory Hospital in Atlanta and he told me my MRI was Normal! And the only bad disc was c5-c6 and nothing was wrong with c4-c5 and that everybody has what i have and my pain areas which were in my scalenes and chest could not come from spine.

    So I decided to continue PT and stopped going 3 months after that in March 2014. I ran 5 K in July, I walk at lunch hour and I did yoga at the gym near work. I stretch my legs and back every night.

    August 2014- I started having pain in my feet to the point i wasnt able to walk anymore. So I was disappointed because in order to keep getting better I had to walk. So i went to see a podiatrist who told me I had athritis and gave me RX for orthotics and PT for feet strengthening. I didnt use the RX but instead I stumbled upon back bending yoga video on youtube and realized how tight the front of my body was. So i started doing yoga at home with focusing on stretching front of my body and eventually I was able to get really serious and joined Ashtanga yoga class (only part of the primary series) and I practiced it every day for HOURS. I still had pain in my legs and feet everyday after work. At work, I would stretch every hour like really obsessed about stretching and I had this thought that sitting was bad for my spine so I would sit pulling my sternum up towards the sky and arching my lower back to protect my neck. I did this for 7 months until one night during yoga, I heard a pop in my sacrum. My middle back started hurting again, my jaw started tensing again. And this time, my lower back also hurt and i could not stand more than one minute. So I decided to use the RX for PT i got last year from the podiatrist for my feet and saw a out of network PT because i really dont want a doctor to scare me with x rays or MRIs.

    I saw a PT she said my pelvis was rotated blah blah and gave me exercises to do. Back pain went away when she was applying the exercises to me but when I did it myself it hurt. My hip flexors and psoas were still really tight. I also saw a massage therapist that same day I saw the PT, the strangest thing was although I asked for deep tissue all she did was touched me like she applied lotion on my skin (no deep tissue) and talked to my muscles told me I have a lot of control over my body than I think and my body felt so relax. So after doing some research I read that I had to reprogram my nervous system to release my muscles. That's when i learned about Feldenkrais and somatic exercises. They work while I was doing the exercises then they will come back. The Feldenkrais practitioner said I have locked left SI joint but the weird thing is if you have SI joint pain, the pain is constant. Mine is not . I also have pain along my ab from my right diaphragm to my right pubic bone. And sometimes it is my right leg is short sometimes it is my left leg is short. Sometimes right quad hurts, sometimes both hurt.

    Then I remember reading about John Sarno when I was a daily reader on spine forums last year. I started listening to his audiobooks. All the stories about his patients sound just like me. I know I have fear of getting sick. I try so hard to be healthy. What I am thinking all these pain I am feeling right now are here because I am going to start my IVF cycle again in August. Like my brain just get really scared about that idea. It has been two days since I listened to the books and I've been talking to myself when my back hurt and the pain will go away. I also write down things I am sad and angry about and the pain went away. I also ran for the very first time since July last year and My bAck didn't hurt. Sitting long and not obsessed about stretching dont bring the pain either. I even slouched and just round my shoulders and jut my head forward for two days at work already, nothing hurt. Weird.

    So that was my story and I hope to find support here.
    Last edited: Jun 10, 2015
  2. Walt Oleksy (RIP 2021)

    Walt Oleksy (RIP 2021) Beloved Grand Eagle

    Hi, azacarmical. The medical tests may show you have some disk problems but Dr. Sarno writes that they don't cause pain.
    Doctors and physical therapists can make you think your pain is structural, but from what you have written it seems to me
    that the pain is from TMS, from repressed emotions and/or a perfectionist and goodist personality. That is a typical combination
    of psychological reasons for pain. Your subconscious sends the pain, and makes it move around or come and go, so you will
    discover the emotions causing it.

    If you haven't yet, I urge you to start the Structured Educational Program which is free in the subforum on this web site.
    It has helped me and many, many others to heal.

    You need to try to stop your fear that you are not going to heal. Fear keeps us in pain. TMS teaches us to think positive.

    I also suggest you watch videos on this web site and videos on Toutube where people tell how TMS works and how it heals us.
  3. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi azacarmical,

    Your story is typical of so many TMS suffers: pain moving from place to place over the years or days, endless diagnosis which "show nothing serious," and endless therapies that focus on physical reasons for symptoms which then work for a bit, then stop. Endless anxiety and obsession about body pains, and what might happen next. Your imitation of symptoms you read on line is a real classic, which you take to levels I have yet to see on this forum! You fit the profile of a TMS sufferer very well. Congratulations! ;)

    So you are aware of all this and found Dr. Sarno's work. This will probably be the key you need. As Walt suggests, do the SEP on the wiki, and be patient with yourself. You have gone through a lot of hell, and your propensities for TMS run fairly deep. Be steadfast, observe changes, ask for support, use your awareness to "see behind the curtain" which you have begun to do. This is the key, and you'll make it. Some folks need therapy or coaching to feel more, but most do not. Do the SEP, and also check out


    This has some great recordings of psychodynamic work that most of us can relate to at some level.

    Welcome to this wonderful community of support, most of whom have gone through a variation of your story. Good luck in your deepening journey!

    Andy B.

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