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I am having doubts about if it’s TMS

Discussion in 'Support Subforum' started by Ashley A, Sep 18, 2018.

  1. Ashley A

    Ashley A Peer Supporter

    I have been coming around to the idea of my pain being TMS for about 6 weeks now. I really do believe it to be true, but I still find myself letting the doubt creep back in - I think because I have never had it diagnosed or seen a TMS therapist or spoken with anyone else with TMS.

    My pain started about 5 months ago with a severe muscle spasm by my left shoulder blade. There was no physical trauma, but I had been going through intense emotional trauma. My brother died of a heroin overdose 6 months prior to the onset of pain. The week before the pain, my anxiety levels were through the roof and I had several panic attacks. When the initial spasm went away, I was left with intense burning trigger point pain and a really stiff, tight neck. I went to a spine specialist who did an MRI of my spine and said I had minor wear, but that it was not related to my pain. He did however describe it as myofascial pain that I had developed. I tried everything to get rid of it - you name it, I tried it. Nothing even came close to making it better.

    Mornings are always a bit better for me, but as the day goes on the pain ramps up. Nighttime had been unbearable for the last four months, but I recently was put on Cymbalta when I had a nervous breakdown. It seems to take the edge off the pain, but I don’t want to be on antidepressants (more on that later). Around the time I was put on the Cymbalta was around the time I really began to consider TMS as my diagnosis. The difficult thing is that since the Cymbalta numbs my pain a bit, it’s hard to know if I’m making progress, in turn I don’t get that much needed evidence that I’m on the right track with the TMS diagnosis.

    Any insight into if my story and onset of pain lines up with TMS would be greatly, greatly appreciated!
  2. MWsunin12

    MWsunin12 Beloved Grand Eagle

    Hi Ashley,

    As best you can, remain with your belief that your pain is TMS.
    If Cymbalta helps somewhat, then you can KNOW it's TMS because Cymbalta works in the brain, supposedly, and that is where Dr. Sarno says our pain actually is perpetuated. We get in a pattern of pain.

    Cymbalta is not really a pain-killer. I think it was a surprise side effect, which points to the fact that tension and anxiety create TMS symptoms.

    I'm sorry to read of your brother. I lost a sister at a younger age, as well. It's an out-of-control situation that has no peaceful resolution.
    Yet, I've come to understand that TIME is an earthy concept and we can't measure how long another person should or can stay here in this life.

    One thing I think women have a more difficult time with is finding joy that is only for ourselves, something we feel passionate or enjoy doing.
    Do you have that in your life?
    Gigalos likes this.
  3. Free of Fear

    Free of Fear Well known member

  4. miffybunny

    miffybunny Beloved Grand Eagle

    You have TMS. I think you should stay on the Cymbalta to help your mood and general mental state. You have suffered terrible trauma and your brain is distracting you with pain to keep you from going crazy. That's how TMS works but now that you have the knowledge your pain can vanish in an instant.
    Ashley A and MWsunin12 like this.
  5. Ashley A

    Ashley A Peer Supporter

    @MWsunin12 Thanks so much for taking the time to respond and thank you for your kind words. I’m sorry to here about your sister as well. The hurt definitely runs very deep, beyond words as you know. Knowing that the Cymbalta effects my pain a little has made me think that it must be psychosomatic, but I guess the doubt still creeps in because I struggle a lot with the concept of it all - it feels so weird to be feeling physically fine one day, then the next you are stricken with pain so severe and constant every single day for the last five months. I get it, TMS really does make sense to me on paper, but it just stills feels so weird if that makes sense?

    I do have joys and passion, but I think it’s been a long time since I’ve really taken the time to look after that part of my life. I’m slowly learning to incorporate more of that aspect into my everyday.

    @Free of Fear Thank you for your response. I will be sure to take a look at the success stories, especially the ones similar to mine. I’ve looked a little bit, but I didn’t find that many under the myofascial pain section. Curious if more people on here are dealing with that kind of pain?

    @miffybunny Thank you for your positive and encouraging words, I appreciate it. I like the thought that now that I’m following the path of TMS that the pain could vanish in an instant!
    miffybunny and MWsunin12 like this.
  6. Dorado

    Dorado Beloved Grand Eagle

    I was put on 60mg of Cymbalta. It dulled my pain quite a bit. Unfortunately, I genetically cannot process Cymbalta and that leads to lots of trouble for me personally. The intolerance made me pretty sick (this is rare and will not happen to you). However, I stayed on it for five months because I was terrified to not have something to dull the pain. If one of the best hospitals says it's the fix, then it must be legit, right? What I'm trying to illustrate is the fact that I had very little faith in myself.

    The intolerance wasn't doing me any favors after four and a half months, so I ended up basically having to quit Cymbalta cold turkey after 17 days of tapering (a million people will want to jump in and say that this is not recommended, but again - my personal genetic tolerance. Don't be like me). I was freaked out about the pain returning. You know what's funny? My pain continued to decrease even after I quit. Drastically - the point that I don't even feel it anymore, except rare occasions where a minor sensation pop ups after stress.

    I'm not saying you need to quit. Take your time. Patients with emotionally-driven pain shouldn't feel pressured to quit just so they can more easily track their progress. But since you said you don't want to be on antidepressants forever, I wanted to let you know that you definitely don't have to be: many of us who went on Cymbalta still made progress, both while we were on it and after we quit. I say "many" because you'll find that lots of us were prescribed it at some point.

    For the record, even "structural" pain can be decreased through neuroplasticity techniques that train the brain to stop accepting constant pain signals, so there's room for everyone to make progress. I'm not saying this because I believe what you're dealing with is structural; I'm saying it because there's hope for everyone: https://www.theaustralian.com.au/news/health-science/training-the-brain-to-beat-pain/news-story/45ad7b7daaaf3c4bbbab6c76b0190ac7 (Nocookies) (Nocookies)
    Last edited by a moderator: Jan 31, 2019
    Ashley A likes this.
  7. Free of Fear

    Free of Fear Well known member

    Hi Ashley,

    Maybe stories about fibromyalgia would translate well? I don't know much about either, but I've heard again and again that fibromyalgia is classic TMS.
    Ashley A likes this.
  8. miffybunny

    miffybunny Beloved Grand Eagle

    Hi Ashley,

    When I say it can vanish in an instant, this is truth. We get in our own way sometimes. I had all sorts of crazy manifestations of TMS, including RSD/CRPS which is like Fibromyalgia on steroids. The brain can produce all manner of physical symptoms. At one point my entire body felt like it was on fire and I was praying for death. We create this pain and we can uncreate it. This is not some mysterious outside force that's holding you hostage and making you a victim. This is all stemming from within yourself and you have the power to extinguish it. I understand the desire to read of others' stories who are similar, but I can tell you unequivocally, it's not necessary. Once you accept the fact that you have TMS and you are already healed (there's nothing actually wrong with you physically), the pain strategy will be disabled and it will lose it's power. The thing you really need to deal with is your feelings about your brother and the trauma you experienced. You may want to consider some therapy (I had therapy over the phone with The Pain Psychology Center for ex.). You need help and you need to feel safe enough to discuss certain emotions with someone. Sometimes a trained therapist can really help the process.

    Wishing you all the best!
    tgirl, Ashley A, Dorado and 4 others like this.
  9. MWsunin12

    MWsunin12 Beloved Grand Eagle

    This is such a powerful and confirming post. Thank you MiffyB.
    Ashley A and miffybunny like this.
  10. Time2be

    Time2be Well known member

    Ashley,you don’t need to be on an anti-depressant all the time. Use it as a help right now, and the taper down if you think you are ready to stop it. I was on 50mg amitriptyline for about a half year, I reduced to 20mg for the next half year and in the end to 10mg. First I had the feeling that I didn’t need the high dose, then in the end that I didn’t need it anymore at all. No withdrawal symptoms whatsoever. Don’t be afraid of the anti-depressant, trust in yourself, you will be able to handle this.
    Ashley A likes this.
  11. Ashley A

    Ashley A Peer Supporter

    @Caulfield Thanks so much for your reply. It’s nice to hear from others on Cymbalta. I’m not sure how long I plan on staying on it. I do feel that it helps regulate the depression and anxiety that has come along with being in pain everyday. Helping numb the pain a bit has been a welcome relief too. Did you find that you made progress faster not on Cymbalta?

    @Free of Fear I’ve looked at some of the Fibromyalgia stories and they are uplifting.

    @miffybunny I am definitely going to seek out a TMS trained therapist. I feel like it will be a huge part of the process for me in both being able to talk with someone about my emotions and also to help make the diagnosis feel more real. I do really belief that it is TMS, but I still struggle, especially at night when the pain is more severe. Another big part for me is that I worry that I won’t have the strength to overcome it - that the neural pathways are too strong. This is what terrifies me the most. This is what gets in the way of my daily progress, as my mind always comes back to this thought.

    @Time2be It’s nice to hear someone else’s perspective on antidepressants. It was such a scary thing for me to make this decision to go on medication and then after I started on it I heard all of the horror stories about getting off of Cymbalta. It’s nice to hear from someone else who has been there and successfully tapered off.
  12. Free of Fear

    Free of Fear Well known member

    Hi Ashley, I hear you on this, and have felt this for long stretches myself. Fortunately for us, the brain is very good at changing! So, so, SO many people have changed their brain through practice, there is no reason that any of us here couldn't either. Maybe someone has recommended these before, but here are a few nice resources to build confidence in this:
    - TED Talk on changing the brain
    - "The Brain that Changes Itself" - great book
    - Moskowitz's method for treating chronic pain through neuroplastic practices

    The moral is... Our minds want to heal. And if we put them in the right conditions, and give them the time they need, then they will heal.

    In that sense, things are stacked in our favor :)
    BloodMoon likes this.
  13. Ashley A

    Ashley A Peer Supporter

    Thanks so much @Free of Fear for that! I definitely need all the uplifting and encouraging advice I can get right now - I am feeling really overwhelmed by this whole process. The idea that my brain is responsible for this pain and that it’s what will get me out of this is scary. I know for some people it’s empowering, but I am scared of my brain and subconscious - I feel so powerless to it. Hopefully by continuing the process, educating myself as much as I can and reading more on the topic of neuroplasticity will help. I haven’t come across those resources you shared before - I will absolutely be checking those out. Thanks :)
  14. Free of Fear

    Free of Fear Well known member

    I'm glad it helped! You will definitely get through this - it's hard work but you're doing all the right things.

    People are going to get sick of me recommending Claire Weekes, but her talks can be really helpful for the moment-to-moment anxiety of TMS work. She's talking about agoraphobia, but it applies to TMS equally well (no surprise - they're both emotional!). You can scroll down and get her MP3's here. They're each short and great. She helped me feel strong again.
  15. miffybunny

    miffybunny Beloved Grand Eagle

    Hi Ashley,

    Your fear that the "neural pathways are too strong" is a false belief. It is not reality. It doesn't matter if you have been in pain for 3 months or 30 years, those "pathways" you speak of can be reversed (technically in an instant but for most humans it take a minute or two lol). Even the phrase you used of the "too strong neural pathways" is actually a guided image you are creating in your head. Just throw that out like a brick. It's nothing but a thought and visual your mind is creating. It's not truth or reality.

    As far as antidepressants go, definitely stay on them! You have anxiety and depression and it's very hard to have a positive or realistic outlook when your mood is so low. All the anti depressant does, is allow you to think a little more rationally, not feel so up and down, or have hair trigger reactions to people or things. It gives you a little space to breathe. You're not taking it for physical pain but for a psychological boost to get you almost to a normal baseline.

    I think speaking to a therapist is the besting you can do for yourself. The best thing. You need help processing a lot of stuff and you need to do it in a way that feels safe. I never used to feel safe. Ever. It seemed so normal though that I wasn't really aware of it!

    You can and will get back to your normal self, and actually an even better self, a more empowered self. It's hard to believe that now, but it's true.

    Claire Weeks book is awesome and I also recommend a new one called "The Hidden Psychology of Pain" by Dr. James Alexander. It's very thorough and Sarno!

    Feel free to pm me any time!

    Miffy Bunny
    Ashley A and Dorado like this.
  16. miffybunny

    miffybunny Beloved Grand Eagle

    "I am scared of my brain and subconscious". It's not that you are scared of your brain, your brain is scared of you and subconscious emotions that are too powerful and threatening. Your brain is trying to distract you with the pain signals in your body because it thinks it's protecting you from terrifying emotions (namely rage and guilt). It would be normal to have rage towards your brother and guilt for having that rage. That guilt gets shunted into the body because you are unable or unwilling on some level to feel those feeling and deal with them. Instead they get repressed. Your brain has created severe pain to keep you from going crazy essentially. This is where you need to communicate to your brain, that you CAN deal with your emotions . You need to constantly shift from the psychological to the physical. A good therapist can help shed light on those buried emotions and bring them out of the basement up to the main floor (your cosnscious). When you do that, subconscious programs will of longer be running your life in the form of TMS. The pain will cease to have a purpose because your brain will realize "oh ok she's dealing with her emotions and doesn't need this distraction anymore."

    People think that if their pain just went away, their life would be so much better. The opposite is true. If you fixed your life and how you are coping with emotions and how you are thinking about your life, you wouldn't have the pain! I'll give you myself as an example. For many years I felt trapped and exhausted by son's severe autism (tantrums, no sleep, poop everywhere etc etc). I resented hum and often had thoughts of killing him and myself as a way out. Since these thoughts and emotions were totally horrifying and terrifying to me, I repressed them, and my brain manifested RSD. This was the most extreme pain imaginable (burning and stabbing neuropathy.... at one point even full body...I had to have emergency ketamine infusions which disassociate the brain for a few hours). The scarier your emotions are, the greater the pain your mind will manifest in your body to distract you. It makes sense doesn't it? It took me awhile but I had to acknowledge certain things to myself and ultimately I had to change my life in various ways.

    I just want to add this because it's a key concept in overcoming TMS.
    Ashley A and Dorado like this.
  17. miffybunny

    miffybunny Beloved Grand Eagle

    Whoops correction... I meant to type "Shift your thoughts from the physical to the psychological". It was late when I wrote that lol!
    Ashley A likes this.
  18. Dorado

    Dorado Beloved Grand Eagle

    Cymbalta did help with the initial stages of calming my sympathetic nervous system down. By the time I started coming off of it, I had fully accepted that my symptoms were caused by stress and I wasn't obsessing over them anymore. I was living life and having a lot of fun for the first time in years - this change in my beliefs and attitude is ultimately what did the trick for me. If you need to stay on a medication a little longer for some extra support in getting there, that's OK.

    @miffybunny, you are a true gem, and this forum is lucky to benefit from your wisdom and experience. Your posts are incredibly impactful and insightful. CRPS is one of those conditions that so many people are misled about because of how severe the symptoms can be - it's definitely rooted in an emotional process. Thank you for sharing your story!
    Last edited: Sep 25, 2018
  19. miffybunny

    miffybunny Beloved Grand Eagle

    Oh thank you so much for saying that Caulfield! That means a lot to me and I've benefitted greatly from many of your posts as well! I've even bookmarked a few of them lol! Another member looked up some of my old posts from 2013 and it's interesting to look back because I have made so many mental shifts since then. I'm more than happy to share my story with as many people possible to give them hope and reassurance that they can overcome whatever they are going through, and be all the stronger for it!:)
    Last edited: Sep 25, 2018
    Ashley A and Dorado like this.
  20. Ashley A

    Ashley A Peer Supporter

    @miffybunny First off, I can't believe it's been 8 months since your reply...I feel quite embarrassed and ashamed, I'm sorry. You gave such a thoughtful response. I have no excuse other than I was tired and overwhelmed. Even now I feel overwhelmed and the perfectionist in me wants to have the "perfect response," but I've used that excuse for 8 months, now is the time to act and create change.

    Thank you so much for all your insightful words, many of them I took to heart...you are so right about my false belief of "too strong neural pathways", but truth be told I still struggle with that thought, or belief, as I seem to hang on to it when I don't get better - thinking that is the reason why.

    I have chosen to stay on Cymbalta (at least for the time being) as it has leveled off my mood. As far as the therapist goes, I am currently searching for a TMS therapist in my area or one I can Skype with. I've put it off due to financial reasons, but honestly think I also have a block too and a fear...but I am working towards overcoming that.

    I mainly just wanted to take this time to thank you - it really does and did mean the world to me. I'm sorry I was so slow to reply! :)

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