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Suspected TMS but need some advice

Discussion in 'Support Subforum' started by Unity14, Jan 16, 2014.

  1. Unity14

    Unity14 New Member

    Hi guys,

    I'm new to this forum and TMS in general and was hoping for some kind advice from people with more experience in this field. I apologise in advance for the length (nobody likes long rambling posts I'm sure!), but please take a minute to see if anything resonates with you.

    A little history...

    I'm now 38. From around when I was 20 I started to get major anxiety and panic attacks along with depression. I'm not sure exactly what started it, but I have always thought it was down to drug use (mainly ecstasy) in my youth. I wasn't a major user as i was afraid of taking whole tablets and i found towards the end of my use that i was no longer getting the "highs" but panic attacks instead. For a few years i didn't know what was wrong; I would see my GP for various things I thought were wrong with me, like dizziness (I was prescribed Serc-8) and stomach complaints (an endoscopy was done). Nothing was found wrong....
    In the end I came across the idea that it might be all anxiety related and spoke to my GP again. I ended up on Zoloft (anti-depressant) and having sessions with a counselor. I seemed to be better for a while and stopped the AD's, although about a year later I had a "relapse" of anxiety/depression and was out onto Effexor XR, which i remain on to this day. The anxiety lasted probably a few months, then I became much improved.. there have been a few blips almost every year lasting around a week.

    Ive had a kind of backache for as long as i can remember. It was never a MAJOR issue and i brushed it off as bad posture and sitting for too long.
    In 2011 I woke up one morning with a numb left index finger tip. I saw my GP who said it was nothing and would be better in a week. No improvement, so i went back and was referred to a Neurosurgeon and had an MRI. It turned out that i had a C6-7 herniation. The numbness gradually left after a few months and I thought that was the end of it.
    I ve also had a few other medical things going on... I had an operation to remove a cyst on my lower back a few years ago, and Septoplasty on my nose due to years of having sinus complaints.

    Now to more recent events...

    In November 2012 I woke up one morning (after having a Massage the night before) with really bad back pain. It was around the Latissimus and Rhomboid areas and felt like a bad strain. It wasn't nice but i wasn't yet overly worried about it and over the course of a month it had gotten much better.

    Then one night in December my wife phoned to day she would be coming back late from work (she usually finishes as 9pm) and i was really irritated lying in bed. I started to fidget with my neck, trying to get comfortable. When i woke up the next morning, the pain was back to its initial levels from November. I was also getting tingling in my fingers and a feeling of ants crawling under my skin in the left side. I got worried and spoke to my GP. He made my anxiety sky rocket when he said it was probably the Nerve in my neck again.
    I went to see a Neurosurgeon privately as the wait on the NHS was too long to handle. He initially said the same thing prior to a new MRI, then changed his opinion a bit after the MRI. He said that some symptoms could be explained by the disc, but some of the other back pain doesn't match with it. Myofascial pain was mentioned.

    By this point I was an absolute nervous wreck - severe anxiety and desperate for help. I just wanted to be better again, both physically and mentally.

    The pain took about 7 months to start to calm down, but keeps flaring up. It might get better for a few weeks to a month, then worse again. I have been suffering from anxiety since it started and have noticed that when one gets better, so does the other. The problem is that either one can set off the other. If I start to feel a bit of pain again, I get anxious that its coming back again and is a permanent thing, which makes me more tense.

    The Pain Specialist i have seen on the NHS has not been clear in a diagnosis. She initially said "Myofascial pain", but in our final session she said my diagnosis was "Chronic Pain". Genius! Her reasoning is that the pain was from the Neck Herniation and that has since healed, but there is a "Pain memory" in the area.

    What Ive Tried...
    • Ive tried Chiropractors and Osteopaths which offered limited temporary help.
    • Ive taken a Mindfulness course which I didn't really absorb much from due to my anxious mind at the time.
    • Ive had CBT which was helpful to a degree.
    • Ive had Physiotherapy which i dont think has done much other than make me more aware of my posture.
    • Ive been on a pain management course (a group course) which was informative but not much else.
    • Medications:
      • Loxoprofen - taken twice daily (like ibuprofen),
      • Tolperisone - taken most evenings (muscle relaxant - this one works quite well),
      • Xanax - not regularly (works ok, but i dont like strong medications),
      • Pregabalin - twice a day (anti epileptic and off label anti anxiety. Really dont like this one, but it was the one most advised but my GP and the Pain Specialist)
      • Effexor XR - anti depressant.

    The Symptoms....

    Its has been all left sided, although it seems to wander around the upper half mainly. Sometimes in my scalenes, then other times across the top of the shoulder, sometimes in my arm or at the back of the shoulder. It has even gone down to my middle and lower back on occasions and down my left hamstring very occasionally. As far as I am aware most of these areas are not related to the C6-7 nerve.
    Its also intermittent... there are periods of very little noticeable pain.

    One of the most irritating and unpleasant current complaints are what can best be described as morning "Myoclonic Jerks". I often awaken to these jolts first thing in the morning. If i stay in bed they continue and cause me a lot of distress and adrenaline. Once i get up, they seem to stop. Again, they are not consistent every morning but in patches. Ive mentioned them to my GP though he pretty much ignored my concerns about them. They're either due to anxiety, due to a medication (maybe Pregabalin) or due to some problem with the muscles/knots. I have no idea and no one seems to have answers. I cant understate how unpleasant they are to experience.

    My Thoughts....

    My Problem is this... Ive not had a clear cut diagnosis, and what little I have been told Im skeptical of. My thoughts keep coming back to this and I get anxious about what the actual problem is. This starts a loop of anxiety causing pain causing further anxiety. I don't know which one comes first... the pain or the anxiety.

    This is why I have started to look at TMS as a possible cause. I know its probably frowned upon my plenty of Medical Professionals and as such I'm not sure I could reasonably talk to my GP about it.
    From what i have read, TMS seems to match quite a lot, but how do i know if im right? Do i need a professional diagnosis of it and where would i get it in the UK (London)?

    Many thanks for getting this far!
  2. honeybear424

    honeybear424 Well known member

    Sounds like classic TMS to me! The anxiety, panic attacks, pain moving around, all kinds of the strange symptoms, failed treatments of all sorts...that is my story as well. Anxiety is a TMS equivalent, and anxiety can cause all kinds of strange symptoms. It is difficult to have both anxiety and pain as TMS manifestations, because they do feed off of each other and exacerbate the problem, but don't give up. YOU CAN HEAL!

    Please, do yourself a favor, and if you have not already done so, begin reading and re-reading Dr. Sarno's books. Better yet, get them on audiobook and listen to them over and over. Repetition strengthens and confirms, and especially in the beginning, we need to infiltrate our minds with this truth.
    Also, Steve Ozanich's The Great Pain Deception is another must-read!

    So glad you have found this forum. Good luck!
    Ellen likes this.
  3. Unity14

    Unity14 New Member

    Hi Honeybear and thanks for your response.

    Ive ordered Dr Sarno's book on Amazon (as well as the CD). As someone new to TMS I really need to try to get the concepts rooted into my thinking. At the moment the anxiety feels like its hard wired into my personality, but I know it hasn't always been like this.
    Like I mentioned, its both strange and frustrating how sometimes my pain lowers to an almost non existent level and my anxiety disappears almost completely, only for one to then set off the other.

    My Concerns:
    I think I have two main concerns that I am conscious of that keep the cycle going. What are your thoughts, if any, on these?....
    1. I become anxious about the constant anxiety, which in turn increases the anxiety (its self escalating). I am aware of it and know some of the strategies I'm supposed to use to rationalize the irrational and emotional thoughts, but it usually feels like I'm just going through the motions and cant really convince myself that anything im telling myself about how "not serious" the anxiety is, is true. I think anyone who has anxiety will testify as to how serious and convincing it can feel, even if you "know" its not. I cant seem to get past that on some occasions. Sometimes its more successful than others.
    2. I am anxious/worried/scared about the pain. Seeing as I've had it for over a year now and alongside some extremely bad anxiety, I think I have formed a kind of "phobia" about the pain. I think it stems from so much having to return to square one after improvements and that I know that the pain usually starts me worrying and the anxiety starts.
    A couple of other things Id like to ask...

    • Is it normal/possible in TMS for the Pain to start first? (meaning the stress of it causes the anxiety). I appreciate there may be some unnoticed triggers that cause subconscious anxiety, but I cant really pick up on what they are. Sometimes it seems that the pain is the first thing then the anxiety is subsequent.
    • In TMS is it possible / normal to have these symptoms :
      • Crepitus (cracking sounds) when moving different parts of the body? The cracking noises are always more when Im going through a painful period. I had rationalized this as muscles becoming inflamed and catching on something, but i really dont know.
      • Increase in pain upon certain movements (i.e. flexing your back or twisting your arm a certain way)?
      • One sided Pain - up until 2-3 weeks ago it was all left sided, although it now is starting a bit on my right side.
      • Myoclonus (muscle twitching) - I sometimes get this in the day in various parts of my body and it doesnt bother me. Its a completely different story in the mornings though as it is the main cause of anxiety. I know the twitches are a symptom of anxiety too, so its hard to tell what causes the morning "jerks".
    Many thanks again!!!
  4. Walt Oleksy (RIP 2021)

    Walt Oleksy (RIP 2021) Beloved Grand Eagle

    Hi, Unity14,
    It does look to me like the answer is yes to your questions. TMS pain can be twitching or one-sided, or move around
    the body. You may think pain is from certain movements such as twisting your arm or flexing your back, but the reasonyou feel the pain that way, Dr. Sarno says you're conditioning your mind to expect pain in those instances. You're telling yourself that that's what causes the pain, but it's not. What's causing your pain is TMS from repressed emotions. I hope you will not spend more time worrying about the pain, or even thinking about it, or that it comes from doing things like walking, standing, sitting, turning your body or moving your body in any way. Spend the time instead on journaling or any other method to discover your hidden emotions. Believe 100 percent that that is the cause of your pain, then you will heal.
    It's simple, yet profound.

    Try some techniques to become calm and not worry or be anxious. Deep breathing is one of the best. Laughing is another.
    Try not to take it all so seriously. Look at your pain as a way to learn more about yourself and others in your life, and
    to find ways to be happy again. Think about how grateful you are for the good things in your life.
  5. honeybear424

    honeybear424 Well known member

    First off, TMSers are notorious for over-analyzing EVERYTHING! And...I can see from your posts that you are quite the perfectionist with the way you present your issues. :) These two tendencies are key to the TMS personality, as you will see when you get Dr. Sarno's books. In the meantime, watching him on YouTube videos is a great way to start learning all about TMS. All of them are good!

    I have watched this one over and over and never tire of it.

    The whole theory behind TMS is that the brain does everything in its power to keep your focus on the body and away from emotional stuff. Clearly, your brain has been doing an excellent job! You notice every little noise, sound, pain, twinge, and sensation. You have got to find a way to begin to think psychologically when you notice a symptom. Ask yourself these questions: What is bothering you? What are you pissed off about? What pressure are you feeling, whether self-inflicted or otherwise? Who were you just thinking about and what were the feelings you were having? All of these types of questions are crucial to getting to the root of your symptoms and resolving them.

    Try to keep it simple, for now. When you notice a symptom, just breathe. Take in some slow deep breaths...at least 5 seconds on the inhalation, and 5 seconds on the exhalation. I have realized that for a lot of my life, I was holding my breath...somehow bracing myself in fear and anxiety. It feels wonderful to really breathe!

    Anxiety is an equivalent of TMS.

    Papillon likes this.
  6. Pingman

    Pingman Well known member

    Unity - I too an in a TMS battle right now, having had a few episodes of health related anxiety of the past 4 years. Each time, I analyzed a normal pain to the point of inducing anxiety and creating somatic pains that no Dr. could find a solution for. Between the periods I was completely fine until the latest one that started in November for me.

    I had some left leg pain that began to increase when I googled and saw it could be related to Multiple Sclerosis. Then buzzing, twitching, electric jolts and numbness set in. Even though I was reassured it was just mild sciatica I started to not sleep and began to wake up at night shaking. My constant focus created = anxiety. So, I found TMS and I challenged my pain by running everyday and within a week or so the pain vanished.

    But....it moved to my head with tension head pain and vision issues. Again I was able to associate these with MS so the anxiety started but for the first time in my life I had panic attacks. It was a terrible feeling...felt like I was in a dark hole with no way out. With some reassurance from my GP, Opthamologist and a few days of Xanax I was able to relax enough to feel a period of normalcy and realize I had manifested the pain that led to the anxiety.

    With the good people on this board I have made some really good progress. I have curbed the panic attacks and have come to realize that my pain is tension related.

    I won't lie that I am in an anxiety cycle still. When I feel the pain it induces fear and anxiety but like many others on here who have healed....you will be able to come to terms with the pain and retrain your brain to recognize it not as a threat. The anxiety will curb down.

    So yes.....the pain can be a trigger for the anxiety. It was for me and still is.
  7. Walt Oleksy (RIP 2021)

    Walt Oleksy (RIP 2021) Beloved Grand Eagle

    Hi, Honeybear.
    That video really is great. It's worth watching again and again.

    I've found that for me, anxiety comes sometimes with the weather.
    When the moon is full, I feel unhinged. I drink a lot of water then because
    I think my body's fluids need more. Low barometric pressure also makes me jumpy.

    Maybe I've conditioned my mind to think that way, but at least I tell myself
    it will pass when the moon goes into its next phase.

    Wouldn't it be great if our next phase was always "up"? If we think it will be,
    it can be. Just call me Mary Poppins.
  8. Unity14

    Unity14 New Member

    Wow, so many great responses! I really appreciate your input.

    That video is really good too! and I ordered that "Great Pain Deception" book (electronic download version so I can start reading it!)

    I was just thinking about what you said about perfectionism and initially i thought that's not me, as I can be pretty slack and lazy about some things (my wife would say most things! :D).... but then I started to think about how I usually tend to try to keep everyone happy and I tend to put others before myself a lot of the time (and i dont mean to sound egotistical, i pretty much have no ego)... and how I can be upset with myself for "letting" myself fall into my current position. Like I should have been more careful or done somethings differently. Does any of that count as perfectionism?

    Forgive my ignorance as I haven't read the book yet, but how can you differentiate between TMS pain and an actual physically caused pain. Is it possible? The reason I ask is in relation to my last post... about increasing pain with certain movements. I understand that it can be the brain is in "a habit" so to speak, of telling you that a certain movement will hurt (psychosomatic), and from my limited knowledge of TMS, the tension can also cause a lack of oxygen into the muscles and nerves which can result in "true physical" pain. Have I got that right?

    For example, today I haven't been feeling a lot of pain, mainly niggles... earlier I flexed my back when stretching and there was a sudden sharp pain (and click) in the lumbar region for a second. It didn't last beyond that second....I must admit, my automatic thought was to assume it stems from something physical actually going on. It utterly feels that way. Can this kind of sudden sharp pain be a result of TMS? (sorry if its a silly question). This is where my confusion lies.... and you are right about how i "zoom in" on every little thing i notice in my body and it seems like a habit... an anxiety induced habit.

    Thanks again for your replies guys!
  9. honeybear424

    honeybear424 Well known member

    The other personality type most prone to TMS is the people pleaser, or as Dr. Sarno calls them, "goodists". You just described that personality to a "t"! And your acknowledgement that you "get upset with yourself for letting yourself fall into your current position" is an indication that there is a tremendous amount of rage within that has built up over the years. I recognize that pattern of self-blame, because I have done the very same thing. What I have had to start learning is self-compassion. It is a practice and has not come easily because I have spent nearly fifty years being my own worst enemy. But I am making progress, and so will you!

    TMS pain and true physical pain (resulting from an injury) don't necessarily "feel" any different from one another. It's just that the physical pain from an injury eventually goes away. Muscles can be strained, tissues can be damaged, bones broken...but these things heal with time. TMS pain stays and stays...for days, weeks, months, years, or it comes and goes, or it changes form, or it switches to another part of the body, or even all of the above! It's whole purpose is to keep you focused on the body and out of the scary emotions that reside in your unconscious mind (anger, rage, fear, anxiety, guilt, shame). Your brain thinks it is doing you a favor!

    I had to chuckle at your reference to your pain as "niggles". Can't say I have ever heard that one before, but it sure is cute! Just another confirmation of how obsessed we become on our bodily sensations to the point of making up words to describe them. ;) The brain can and does cause all types of pain...dull, sharp, achy, tingly, buzzing, pulsating, etc....anything that will grab our attention...anything to hook us in. When I feel a new twinge of something new, I firmly tell my brain to "knock it the hell off!!!" (and not always in such a nice way!).

    I'm excited for you that you're embarking on this wonderful journey of self discovery!
  10. Sanghagirl82

    Sanghagirl82 Peer Supporter

    I can relate to your story. Sometimes the anxiety of anticipating the pain can actually be worse than the pain. I started this TMS journey at Christmas when I read a book called BACK IN CONTROL. I did more reading and searched through this site. Then I decided to start the SEP program on this site a few weeks ago. I can honestly say that I have made very good progress since Christmas. I have had bad days and times of major doubts. But I finally pushed myself to start journaling through the SEP program to get my anger out. That has been particularly helpful to me. I do practice mindfulness. It was hard at first but over time I have relaxed into it. But I needed to learn about TMS to really start seeing significant progress. I keep reading and hearing that educating ourselves about TMS and believing in the diagnosis is important. I DEFINITELY resisted this at various times which just goes to show that I do have it. I am accepting it more now and continuting to read. The people on this this forum are great. They have certainly given me inspiration and hope. I wish that good things will happen for you too. You seem to be self aware and that is a helpful beginning. Hang in there. In a few weeks after some reading etc. you may see some of your symptoms disappear of subside like I have. Best of luck.
  11. friedmin

    friedmin Peer Supporter

    Hi Unity 14 - I am new to this forum as well, and also experienced multiple symptoms and have suffered from anxiety (less so now) - with pain moving from buttocks to lower back to middle back to neck to right thigh to feet, etc etc. This seems like classic TMS, even though I could provide a physical explanation for each of the pain areas! This is where the TMS diagnosis comes in... I totally "get" what you're saying about the link between pain and anxiety. A few things that have helped me is reminding myself that nothing horrible is going to happen, recognizing the link between fear and pain, meditating and allowing the body and mind to relax.

    One of the powerful things I am learning in my ongoing process of healing is that all the advice from experts often translates to a) my body is "damaged goods"; and b) I won't get better because this modality or that didn't work - all of which ups the anxiety level, which then translates to increased fear and tension and pain. I had a PT who told me that I had pelvic instability. The TMS doc I spoke with said this is ridiculous. In shifting my thinking about this, I have felt stronger and this is helpful in healing.

    A few things I like about the TMS diagnosis include these notions:

    * there is nothing seriously wrong with your body (hard one to accept) - each pain can re-stimulate the notion that there IS something wrong. As I am just taking on the TMS diagnosis and "working it", I still grapple with this notion, but I understand that it's a "practice", just as honeybear424 has said! (re-reading and re-listening to the TMS experts)

    * that you need to live your life (oh no, can I do that without making things much worse?) - for those of us who have the anxiety pain connection, living your life feels scary.

    * that you need to recognize that your body is manifesting the stressers in your life (for me, the body is "wearing" the fears). TMS'ers refer to the power of repressed emotion, and if I read it right, Sarno says that you need "accurate thinking" - which means recognizing the link (and not necessarily diving into old stuff, although some people work on the old stuff to release the feelings).

    As I'm new to the TMS diagnosis, I am just feeling my way. As a newbie, welcome to another newbie! There is lots of wisdom in this forum!
  12. Unity14

    Unity14 New Member

    Hi guys and thanks for your replies.

    So Ive gotten Dr Sarno's book and I'm reading through it and I also got "the pain deception" book too. Haven't managed to finish either one yet as I keep getting distracted by my son (and wife!). I honestly feel that TMS matches my symptoms and personality much more than the traditional medical diagnosis does (not that I have had a clear diagnosis).

    One thing I would like to throw out there is something that happened today and brought on some doubts....
    Since my pain started around a year ago, I have had this cracking (crepitus?) on and off around my T3(ish) area when I tense my left trapezius and flex / tilt my head that way. It very rarely hurts and I do it out of habit. This morning i did this and there was a "crack" along with a sudden sharp pain exactly where the crack was felt. The pain is still there and seems to get worse with head rotation to that side.

    Now I know that TMS pain is real, but can anyone provide some objectivity and reasoning on how today's event can be TMS related. The crack and the pain were simultaneous and it felt as if something had got caught/snagged on something else.Im trying to find a link, in my mind, to how this can be explained by TMS.... any thoughts welcome!

    Thanks for reading!:happy:
  13. honeybear424

    honeybear424 Well known member

    Boy, your brain sure has got your attention, doesn't it? It's been doing a wonderful job of keeping you focused on the body, but you don't need it to anymore. Just ignore it and move on with your day. Every time you think about it or feel pain there, tell your brain to knock it off...plain and simple. Think about it...does it really make any sense to describe your crack and pain "as if something had got caught/snagged"? You've got to stop micromanaging every little thing that you feel in your body. What could possibly get caught or snagged? Keep reading and listening to Dr. Sarno's videos. TMS wants you to have doubts of its existence. Then it knows it is succeeding at keeping you out of your unconscious mind where all of those scary, unacceptable, dangerous feelings are! It knows you are on to it and throws new stuff at you to trip you up. Don't let it!
  14. Walt Oleksy (RIP 2021)

    Walt Oleksy (RIP 2021) Beloved Grand Eagle

    Great advice, Honeybear. The less we think about our pain and stressors, the better. Think happy, positive thoughts.
    Unity 14, it seems to me that you're developed a conditioned reflex regarding pain after hearing a cracking sound.
    Now every time you move your head a certain way you expect to get pain.
    It's really just TMS and your unconscious mind putting pain there so you spend more time
    thinking about your repressed emotions.

    Give it a try. It's the whole theory behind Dr. Sarno's TMS.
  15. Unity14

    Unity14 New Member

    Hey guys, its been about a month since my last post, so I thought Id check in.

    Ive recently been reading The Pain Deception and its really good. The more I read the more I find it resonates with me, my history and my situation. I'm definitely still in the initial stages where I believe I am very likely going through TMS, but still have many doubts at times, especially when the shoulder and arm pain is sharp with certain head movements and there's some subsequent finger numbness. I think this is normal, at least from what I have read so far.

    The pain is very real.... in my case muscular and nerve related, as it is described by Dr Sarno, and I'm still coming to grips with the cause being repressed emotions manifesting physically rather than what other white coats would have me believe. Its very much a different approach than everything I have been conditioned to do. I think a good way to see how much power the brain has over the body is through the placebo effect, which brings me onto my next point....

    Ive also been watching Dr Lissa Rankins presentation to Google "mind over medicine" which seems to touch on some similar ideas to TMS. You may have already heard about her, but basically she states that the amygdala (in the brain) cant differentiate between true fight or flight situations and everyday stressors. It has been demonstrated that negative emotions can make people have all kinds of illnesses which can heal once they are identified and addressed. Its really very interesting with some scientific backup.
    From my understanding it is very similar in that the amygdalas' flight or flight response reduces oxygen to "non vital" parts of the body when it deems something is a threat, in this case in the form of unacknowledged emotional tensions. Sounds very similar to TMS to me.

    I think I just need to keep reading and re-enforcing the TMS ideas and try not to have any ideas about how long a recovery will take. I also need to beware of "trying" to get better... as long as Im trying, I am paying pain too much respect and prolonging/feeding it.

    Thanks for reading and thoughts/replies most welcome!

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