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numb/tingling face: Myofascial Pain Syndrome

Discussion in 'General Discussion Subforum' started by bntrunnelle, Nov 4, 2020.

  1. bntrunnelle

    bntrunnelle New Member

    I have read plenty of forums on this website, but this is my first posting. I have decided to share my story as it has forever changed my life, and I feel as if most medical professionals I came across were puzzled by my symptoms.

    One year ago, a week after I applied for physical therapy school, the lower left side of my face started tingling as I was studying for an exam. This sensation immediately worried me, and I went into a mode of extreme fight or flight. I could not shake the feeling that something was insanely wrong with me. Then my face and neck began to feel very numb (sensory, not motor). I could feel intense pressure coming from my neck muscles. The next day during my exam, my whole head was tingling, and I could not even focus because I was so concerned about what I was feeling. I made a doctor's appointment, and he sort of brushed me off initially because I am young and active, and appear very healthy. He told me all my tests would probably come back negative, and to my complete surprise, they all did.

    I was on and off muscle relaxers for six months. Tizidaine was the most effective in reducing my symptoms, but I stopped taking it when I discovered the book 'Mind Body Prescription.' I tried every physical treatment possible, and all reduced my symptoms initially, but I realized this was most likely the placebo effect in place.
    I tried:
    -cervical pillow
    -cervical traction
    -physical therapy
    -CBD cream, lidocaine patches, tiger balm
    -cortisone injections and pills
    -trigger point injections
    -dry needling
    -heat and ice
    -biofreeze/Cooling Agent and Stretch
    -magnesium supplements

    After ALL of this, in my worst moments in early March, I could not even get out of bed to go to work because my symptoms shifted to my right side of my face and neck and were very intense. I feared that every movement I was making was contributing to my symptoms, and I was so scared I was going to end up with permanent nerve damage. I restricted myself from sitting in certain positions, driving in a car seemed to be a trigger, and my waitress job at work. Initially, I believed this to be an overuse injury of my neck muscles since I carry plates on my left arm at work. However, once my symptoms shifted to the other side, I questioned how that was even possible. I searched on google '100% cure from myofascial pain syndrome' because I could not accept that I was supposed to live with this for the rest of my life. I found an article about a woman's recovery and how it sounds so crazy that a book helped her eliminate her chronic pain. At first, when I heard the concept of repressed rage, I felt as if this could not apply to me because nothing in life ever truly makes me feel angry inside. I felt far from being an angry person. I lacked understanding at this point and later began to realize and understand the concept at a deeper level.

    When I first began reading 'Mind Body Prescription' I developed really intense back pain for about two weeks. I tried to reason that it was because I was laying in bed all day and that I have not been as active. I truly felt as if my body was breaking down. When I learned about the symptom imperative, I then began to realize that is exactly what my back pain was and it subsided. Then I developed jaw pain, and chest pain that I used to have even returned. This experience fascinated me.

    I learned that prior symptoms I had to myofascial pain syndrome, were somehow all mind-body equivalents and ultimately connected. My TMS symptoms all began during my senior year of college. A time period of increasing pressures and I dedicated almost no time for myself. I pushed myself relentlessly, and then my body began to speak to me in a way that I did not understand.

    My main symptoms:
    (2018-2019) Had random tinnitus in ears occasionally
    (March 2019) At 4 am studying for an exam one day, I developed severe chest pain that lasted for 5 months.
    June 2019 (started developing random benign rashes when studying for a graduate exam)
    September 2019 (developed myofascial pain syndrome)

    Before all of this, I did not consider myself to be an anxious person. I always can remain calm in every situation and am often stoic and people often tell me they have no idea what I think of them. The driving factor in my life that made me anxious was college and getting accepted to physical therapy school, and this led me to push myself relentlessly. I would consider myself to have perfectionist tendencies, where I expect a great deal of myself and am constantly trying to better myself. I strive to be the best in every area of my life, and often accept challenges because I enjoy pushing myself. I would not say I show myself much compassion, as most of my accomplishments never seem to be enough for me. I am always working towards the next thing and repressing emotions along the way to prevent them from getting in the way of my success.

    My question is, how am I supposed to ultimately change this and eliminate my symptoms? I understand so much of this information as I read upon it daily and have implemented it into my everyday life. I understand acceptance is huge and acknowledging the reservoir of rage. However, if I feel I am more successful by not being emotional, how am I supposed to learn to feel these emotions? Sometimes I am not aware of the emotions I feel, it is very hard for me to decipher.

    Does it sound as if my symptoms are being caused by my personality qualities and not showing emotions? Or life pressures or core issues? Or all of the above contributing?

    I am working on the life pressures aspect because I am trying to release the things I cannot control and give it to God. I feel though as if my personality is hard to change because part of me likes that I am not emotional because I feel the people who are emotional are in a sense weak. It is a really weird belief and I am sure it is something from my childhood that has engrained this in me.

    I have got to a point where my symptoms are typically 50% better :D
    I have also completely reduced my symptoms for up to a whole week several times the past few months, which makes me more than grateful.

    When my symptoms return, is it often due to a trigger of a subconscious emotion? Or an overly sensitized nervous system that still needs work through processing unfelt emotions?

    Any sense of feedback would be appreciated, I apologize that this is so long.
    Balsa11 and Joe888888 like this.
  2. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    This is one of the most common issues we see - and it absolutely goes hand-in-hand with the very common inability to get in touch with deep emotions.

    That was me, all my life. Typical response: "No, you can't have anxiety! You're a rock!" Well let me tell you, every doctor I ever saw for this, that, or the other complaint - starting from just before I went to college at age 18 - was not fooled. Every single one said "I don't see anything wrong with you other than anxiety (or stress)". So I lived with symptoms coming and going for four decades - until they reached a crisis point the year I turned 60 - which is when I discovered Dr. Sarno.

    Look, you are asking some really big questions here. I could spend a LOT of time trying to answer them - or you could make the commitment to do the work on your own, by engaging in one of our free programs. We didn't have Alan Gordon's program when I started this work in 2011, so I did the SEP - but it did the job at the time - and I also have to say that Alan's posts and a couple of his live webinars from back then were hugely influential for me. He is truly the master of getting you to give yourself permission to take the enormous risk that means being open to experiencing your true emotions. It's scary. And it has to be done.

    Try them both, see what appeals to you. the SEP is a little more structured, with shorter more straightforward segments, but some of the pages are outdated and have lost their links. A paid (and always updated) option that is somewhat similar to the SEP would be the Curable app, which is pretty popular among those who use it. I supported them with a lifetime subscription and I like to dip in occasionally, and I really enjoy the podcasts.

    In doing this work, I only have one extremely important piece of advice with two parts to it:
    1) You have to be willing to write - which means doing the writing exercises in the programs. I don't mean formal journaling, I mean just writing shit down. Throw it out, delete the text file, whatever - but you have to get stuff out and into some form of print via your hands. That's the first part.

    2) The second part is that you MUST be 100% honest with yourself as you write or do any of the writing exercises in the programs. Whatever you do, do NOT give in to the little voice in your head that tries to tell you "oh, no - don't write THAT down! That's too embarrassing (or shameful, or stupid, or "not important" or some such BS). Hear the voice, ignore the voice, and write the thing down anyway. This is essential. It might not be earth-shattering (chances are it's not at all earth-shattering), but if it's something your brain doesn't want you to write down, it will have some meaning for you and it will relate to the kinds of things you are repressing. Even the littlest things will have meaning.

    The programs are:
    The SEP: Structured Educational Program
    Alan Gordon's Pain Recovery Program (generously donated to our site by Alan!)

    I write every night, by the way, and have been doing so since the beginning of 2020 - which turned out to be an emotional minefield, so the daily writing keeps me sane. I scribble on old notebook paper, both sides, and recycle it when it's filled up (I don't live with anyone, so that's a safe option - not that my scribbling is even readable). Nicole Sachs, LCSW is a huge proponent of writing like this - she uses an ongoing text document for her daily writing, but the final save is always a completely blank document - this means that there's no inadvertent temporary backup on her computer for one of her many family members to stumble across - and also no way to revisit old writings, which would be a waste of time and energy.

    Anyway, there you go - that's my best advice for proceeding towards recovery. Which you will achieve, because let's not overlook this:
    You're already well on your way - you go, girl!

    bntrunnelle and plum like this.
  3. bntrunnelle

    bntrunnelle New Member

    Thank you so much for your response. I appreciate you taking the time to inform me of the methods that ultimately helped you! I will start implementing those in my life as well :)
  4. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi bnrunnelle,

    Great posting by you, and great response by Jan!!

    I have a couple of remarks.

    You know this started when you were under a lot of stress. It is probably helpful to remind yourself of this every day.

    You know you push yourself. This is probably a "cause" of your symptoms. Remind yourself of this every day too, or when you notice symptoms. 10x a day would be better.

    You know you're getting a lot less symptoms, and good again to remind yourself of this every day. Better this than trying to eliminate or worry about symptoms.

    Now, importantly, you don't have to fix you. You can't change your personality, or if you can it can only be slowly in time, as you get more and more clear about the suffering it causes you --and by that I mean the suffering of self-rejection. Sure, it might contribute to TMS, and probably does, but the mind doesn't know this. So the way change will happen is by knowing and feeling the suffering in the way you push and reject yourself. This takes time, inquiry, writing, feeling. Softening your self relationship comes. Self-compassion comes. I suppose it already is happening, even if what you're mostly aware of is this:

    Awareness begins to change this. The fact you're understanding your life this way means it can shift, means that parts of you are aligning to support shifts..,

    So don't worry about having to remake yourself. Understanding for your life, and understanding how all the components contribute to TMS will come, especially as you do the programs we have here. It is a huge invitation to deepen your life. And it sounds like you're already having great success. Take confidence. Be patient.

    If you can correlate symptom changes with stress, or inner stress, events, relationship stuff, etc. this is helpful. Just gently ask yourself why there "might" be a change, and see what comes into your mind.

    bntrunnelle and JanAtheCPA like this.
  5. bntrunnelle

    bntrunnelle New Member

    thank you for the feedback :)
  6. deny

    deny New Member

    How are you now?
  7. bntrunnelle

    bntrunnelle New Member

    Doing better overall. I still struggle with flare ups when they come and it definitely is hard with my symptoms when they are high. Yesterday I got numbness in a new spot on the opposite site of my face... so that should bring more confirmation to me because my symptoms are moving. But I will admit sometimes it is still very scary and it is hard to convince my brain that it is a normal sensation. I partially believe this is because when I was researching my condition in the very beginning, every time I saw numbness and tingling I would see the word 'nerve damage'. It seems that nowhere online believes you can have numbness and tingling and that it can be normal. And since I always felt pressure in my neck from my symptoms, I would see online that "more advanced pinched nerves can cause extreme pressure, this is a sign of a medical emergency" and so I think whenever my symptoms were high back then I could not shake the fear because I was reading online how something was seriously wrong. Something I am trying is completely changing the way my brain thinks. It is really difficult sometimes to challenge a thought and then respond to it differently. But I believe with consistent practice of lowering my danger alarm signal, and by showing myself compassion instead of frustration, that I can beat my symptoms. I am not expecting my healing to be linear, and that allows me to get through even the hardest moments that I experience. :) :)
  8. bntrunnelle

    bntrunnelle New Member

    It was also hard when I first looked into TMS because I never really saw too many people who experienced neurological symptoms in their face. This made me feel initially like maybe my situation was different. But I knew it had to be my explanation because all my tests were normal, and everything about TMS made sense to me. I still remember the first time I felt relief of my symptoms after believing in it. Back in April my symptoms were at their worst they have ever been. It was just complete numbness and I was not getting relief. It took a whole month of reading about TMS before I felt any relief of my symptoms. I was watching a youtube video and I remember the speaker said 'Your body will only heal when it is in the parasympathetic state' and those words really spoke to me. Because I realize how my body is always in the fight/flight. How much pressure I put upon myself to heal. How I would always look at a calendar and think it has been months. How my curiosity about my symptoms could have potentially been a bad thing but I forgot how to live without my symptoms. Here's a link from the youtube video I saw that initially took my symptoms away for two days! This was a big sign of hope for me.
    Balsa11 likes this.
  9. Balsa11

    Balsa11 Well known member

    Checklist thingofajig: Thoughts, Nerves/Tension, Self-care/Wellbeing
  10. Are you completely pain free now? Because I am facing same issues
  11. Eureka

    Eureka New Member

    Hi, I've been reading this forum for a few months and this is my first time posting.
    I hope that my story gives you a little hope.

    I'm now 58 and was diagnosed with trigemminal neuralgia over twenty years ago. About 11 years ago I had a microvascular decompression, which is a surgical procedure where a piece of teflon is inserted between the trigemminal nerve and an artery in the brainstem.
    It worked like magic for seven years and I was just like other people, leading a normal life - pain free.

    Then it suddenly resurfaced but ten times worse than before, I ended up under the care of two separate neurologists as I was now diagnosed with TN, cluster headaches and migraine all interacting and triggering each other. I was off work for six months that first year and put on pregabalin and amytriptyline, which initially helped. Roll on the years, still on medication (and taking months off work, each year) but now having steroid injections into multiple sites on my scalp, trying all sorts of different (horrendous) medications - none of which worked.
    The year before last I decided to go to a CBT therapist and when talking to her one day, I said 'I just want to get rid of the pain' and she replied 'Which one?' clearly referring to the enormous stress that my family was causing me (mum, dad, sister).
    Over the years I've just put up with the pain (such a trooper) but this last year I'd been secretly wondering whether there was an emotional component driving it - but felt so ashamed at the possibility that I shelved the thought. After all, I'm a coper - the person that everyone turns to to solve their problems.

    This year, I had a massive flare up from January - March and was signed off work. Desperate, I found a testimonial on the 'Curable' website from someone with exactly the same diagnosis as me who was now pain free - and I believed her story! Ever sceptical about people making money from other people's pain and misfortune, I decided to investigate the premise of the app (rather than sign up) and came across Dr Sarno. I immediately recognised myself and began vociferously reading, watching youtube videos and bought into it. This also led me to Dr Mate Gabor and his youtube posts and book 'When the body says no'. Tellingly, when I told my daughter about it, she said 'You're not going to obsess over this now, are you?' - what, me, obsess?!

    I started the journaling and it was a revelation.
    I realised that I had no idea what my feelings were as I was completely numb. Journaling and Alan's PRP have helped me to get in touch with my feelings, put a name to them and most importantly, stop being frightened of them and allow myself to feel them. As I wrote about an experience, I began to feel nauseous, I focussed on the horrible feeling rather than dampen it down with a cigarette, chocolate or by holding my breath and realised it's not nausea, it's loneliness and then felt a deep sadness, which I realise that together with fear, was the overriding feeling of my childhood.
    I now recognise that I was brought up in an emotionally abusive household with occasional physical violence but always living with the threat of it. My mum, I can now see, had undiagnosed anxiety and narcissistic characteristics, whilst my dad seemed permanently furious.

    I have been pain free since March and feel that I am really breathing for the first time. I really believe that my dis-ease was caused by repressed emotion and feel a liberation in acknowledging this. I no longer feel ashamed of it being TMS but am grateful that it has given me a shake up. A way of sorting my life out and discovering the authentic 'ME'.
    JanAtheCPA and Baseball65 like this.

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