Symtom Imperative/Extinction Burst???

Hello!

I've been dealing with left side back pain for about 3 1/2 years with some varying degrees of success. I think a big block for me is that I am SO freaked out by TMS. It makes sense to me, however the fact that your brain and nervous system can generate pain strictly off emotions is frightening for me. It feels as if I have no control over it. It just really terrifies me and I think that's been a big hinderance in my recovery. Even on my good days I tend to live in fear of the pain. I do tend to obsess by nature and there has been so much fear and focus (the big no no's in TMS recovery) for me, pretty much daily.

I've made significant progress from where I began, I've even had a handful of pain free days. As recently as the beginning of September I had a pain free week! Then migraines took the left side back pains place. The migraines didn't freak me out and I was able to not send my nervous system into a panic, which is a huge win. They didn't freak me out because I've had other random symptoms (other than right side back pain) throughout this journey and have always been able to get rid of them fairly quickly so I wasn't worried that they'd stick around this time. The migraines went away a couple of weeks ago and then back pain flared up a bit (surprise, surprise). However about 2 weeks ago (after a really stressful time that I didn't handle that well) the back pain sky rocketed and this time recruited my right side as well, which is really freaking me out that it's spreading. I've never had any pain on my right side the whole 3 1/2 years I've been dealing with TMS.

I am trying to not give it attention but my back pain has always been my achilles heel if you will. It's the one symptom that scares me the most because it has been so enduring - almost daily for 3 1/2 years. I know it's not good to put so much weight in that and create stories around what it means, but I have unfortunately and so now that I have even more pain (both the left and RIGHT now) I'm trying to keep from freaking out.

That's why I'm reaching out to all of you lovely people to offer any advice. I am trying and feel like I'm doing a pretty good job and haven't totally freaked out yet, but I feel myself slipping and I don't want to go there. I've been saying my affirmations daily, telling myself that it's just symptom imperative or extinction burst or both. I've even come up with a few little diddy's that I say to myself - one being, fear and focus are no friends of mine. But I'm honestly just really scared. I'm feeling like not only am I not healing, or at the very least maintaining, but actually getting worse. Any advice on how to not let my mind run with this and create stories, how to truly lose the fear and focus? If if it does indeed sound like symptom imperative? I really am trying, but I'm struggling!

If anyone can relate, or any advice is so greatly appreciated Thanks!

 

First of all I'm sorry you're in pain. Bottom line it sucks to be in pain. I will follow your thread because I am somewhat in same boat as you. My Achilles heel is my arms. Both arms. I did nothing for 3 years to not aggravate the already excruciating pain I had all day. The arm pain slowly turned into fibro. Head, legs, teeth, is etc. But the arm pain is what was my tormentor. The other stuff I could also handle. I just recently started my handmade online products again and I'm trying not to freak out because the arm pain is there again. TMS was easy to accept when I was doing nothing but harder when I'm using my arms. I resonate a lot to your fear of TMS. I had to admit that I'm afraid of it. We can't face what we fear until we admit what we are afraid of. Maybe that's a step for us to know that we fear TMS. I don't know.

I will say that as far as your pain going to other side. I also had arm pain start only in right arm and move to left arm as well so I understand your fear with that. It is scary. I feel scared too. You're not alone in that. I'll even back and forth with myself. "I'm scared,. No you can't be scared that makes it worse,.but I am scared,. Don't tell it that." It's also hard to not want to not have pain. So I wish I had advice, I truly do. I saw you also wanted feed back on relatability and I can relate. Perhaps you'll get some advice that puts things into perspective. Thanks for asking this question when you did. I feel you 200%!
Best to you!

 

Thank you so much for taking the time to respond! Although advice is nice, honestly it's just as good just to have others relate - definitely helps to not feel so alone, so thank you from the bottom of my heart for sharing a bit of your story. If I may say so, one thing that stood out from reading your response was "I did nothing for 3 years to not aggravate the already excruciating pain I had all day." That sounds an awful lot like me. And I've often wondered if by not doing anything I've allowed the pain to grow - fear and focus and fear of movement - not living as I normally would. FEAR, that really seems to be the theme. I'm a bit of an over-thinker and over-analyzer so the concepts of TMS actually make perfect sense to me and what you need to do to overcome it, but in practice it's a WHOLE other story...there's that FEARFUL reptilian brain. I really want to drive the point home about fear to you (but really I think I'm driving it home for me) because I truly believe it's one of my biggest (if not the one and only) block that I (we) have to a full recovery. Fear and focus = keeping TMS alive. Yet somehow, I can't quite seem to shake it.

I'm not trying to so easily give you advice as if it's so simple to adopt, it's just easier from the outside looking in. Maybe if we can try to harness some of the wisdom that comes easier when giving tips to others but towards ourselves too, we could see some major progress. Just a thought. Just know, I completely resonate with you on everything you're feeling - so we are not alone, you're right Definitely that I've kept myself small in fear of the pain - thinking it would flare-up (however, not thinking it would get worse due to actual tissue to damage, since I know there is none and believe it fully, but rather "annoy" the TMS neural pathways) therefore avoiding movements. Also beating myself up about being scared of it- knowing that makes it worse. And couldn't agree more that it's extremely difficult to not want to not have pain - almost seems against human nature.

Thank so much for your reply, I really do appreciate it! Good luck with your online goods shop, you can do it!

All the best to you on your journey,

Ashley

 

Yes!! You are so right! I completely know it's the fear that's getting me. And also yes to knowing what TMS is and hitting all the personality traits and a very stressful time in my life but understanding it and doing it are very different. I know what you mean by how it seems so clear when you are reading someone else's story that it's TMS and they're ok. I think it's because we can't see each other's fear or better yet hear the voice in each other's head that keeps us scared. It's all invisible but so real in our lives. The reason I came to this site tonight was to see if anything was on here tonight that could teach me or help me feel not alone. So I do think by us sharing we can kinda take a deep breath and know that this is the nature of the beast.

What's crazy is I'll explain to myself that this is TMS and point out the facts that prove it's TMS and I'll feel better. Then I feel a twinge and I'm right back to the feeling of fear. So it is a habitual fearful way of thinking. I just keep keeping at it. But you're right,. I can feel that it's the fear driving the pain. Is what you mean by annoying the neural pathways is that say something stressful happens and you get anxiety from it, that now you will set it off. I sometimes feel like I want life to behave(totally unpractical) so that I don't react and set off my fight or flight. This is also fearful way of thinking because it's as if I'm scared of life. Awesome right? Geez..
Thank you for replying!

 

Also yes to having a fear of movement. It's as if any time I do more exerting tasks I am kinda checking in to see,. "Is it there?,. No,. Good. How bout now?" Ha! It reminds me of the saying "A watched pot never boils" except this pot does boil when you watch it.

 

Ashley, I have read both of your posts today (this one and the one about the New York Times story regarding Sarno and modern pain science moving beyond him in some respects). That prompts me to write what follows.

I’ll begin with Sarno. In Healing Back Pain, he wrote (with emphasis by me):

“I remember a mother telling me proudly how she had stopped the temper tantrums in her little fifteen month old. The ‘wise’ family doctor suggested that she splash ice water in the child’s face when he started to have a tantrum. It worked beautifully—he never had another tantrum. At the ripe age of fifteen months he had learned the technique of repression. He had been programmed to repress anger because it produced very unpleasant consequences, and he would carry that dubious talent with him throughout his life. Now when confronted with the multitude of frustrating, annoying, sometimes enraging things that happen to people every day, this man automatically internalizes his natural anger, and when that anger collects and builds up, he will have TMS or some such physical reaction in response to it.”​

In short, the man learned at a young age to associate experiencing anger with danger to his well-being, so he learned to repress it. And Sarno said he would carry that learning with him for the rest of his life.

You wrote: "the fact that your brain and nervous system can generate pain strictly off emotions is frightening for me. It feels as if I have no control over it." Anger at times toward family members, other people we are close to, people we work with, etc. is a normal human reaction. We have no control over the autonomic physiological response that leads to what we call anger, but we can learn the skill of being aware of the anger and deciding whether to express it and, if so, how to express it in a way that is not dangerous. Sarno said in a 1994 interview that the solution to TMS due to repressed anger was this: "Know about the anger, and know why it’s there. And if you do those two things, your pain will go away.” Once you know about the anger, i.e., quit repressing it, then you can figure out why it's there, and then you can cognitively assess how dangerous it really is. From a modern pain science perspective, repressed anger itself is not what causes chronic pain. Instead, the problem is the learned association of anger with danger to one's well-being.

This brings me to modern pain science. Alan Gordon’s Pain Recovery Program, which is available on this tms.wiki website, is based on that. I urge you to take a look at his Day 2 lesson. The essence of it is this: Pain = Danger. You brain will create pain when it concludes you are in danger. He explains this by noting two facts. Fact 1 is that if your brain determines you are in danger of tissue damage, it will create pain to protect you. He asks you to imagine you are out for a run and sprain your ankle. You now have tissue damage, but if you resume running, you are in danger of suffering more tissue damage. You brain protects you by creating pain that induces you to limp home so you do not cause more damage and then induces you to take it easy on your ankle for a while so you do not interrupt the healing process.

Fact 2 is that your brain is not perfect. The human central nervous system did not develop in a way that is able distinguish between danger to your physical well-being, e.g., tissue damage, and danger to your nonphysical well-being, e.g., very unpleasant emotional or psychological consequences. Your brain will create pain to protect you not only when the danger that you face is to your physical well-being but also when the danger is to your non-physical well-being. Your brain blunders in the latter case because its creation of pain does not protect your nonphysical well-being, but the problem is that the human brain in not perfect.

In recent years, Dr. Howard Schubiner and Alan Gordon have been emphasizing that danger in the form of fear of your chronic pain—e.g., you fear it will damage your social life or prevent you from holding a job and you fear you will never overcome it—can play a big role in perpetuating and increasing your pain. I think Sarno appreciated this way back in Healing Back Pain because two of his Twelve Daily Reminders were “Since my back is basically normal there is nothing to fear,” and “I will not be concerned or intimidated by the pain."

Recently Alan Gordon has modified his “Pain Recovery Program” a bit and calls his new approach “Pain Reprocessing Therapy.” His point is that to recover from chronic pain you need to change how you process your pain. Specifically, you need to (1) quit viewing your pain as an indication you have present or potential tissue damage and (2) quit fearing your pain. So how do you do that? His new book, titled The Way Out, is devoted to telling you how. I have a few quibbles about the book, mainly because of what is not in it. But I surmise from an interview of him I saw recently that the omissions were deliberate in order to make the book more user friendly. A clear strength of the book is that it is easy to read and user friendly.

The International Association for the Study of Pain, which has thousands of members worldwide, defines pain as “an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage.” There is no denying that pain is an unpleasant sensory and emotional experience. But that does not necessarily mean it is associated with actual or potential tissue damage, and usually chronic pain is not so associated. To recover, you need to persuade yourself that your pain only resembles the unpleasant sensory and emotional experience associated with actual or potential tissue damage, and you need to develop hope and optimism that you will be able to overcome the pain. I detect a lack of optimism in your post above. I urge you to read The Way Out. I think it could help you reprocess your pain if you study it carefully, buy into it, and apply it to your day-to-day life.

The hardest part is buying into it. Alan Gordon and a former colleague at his Pain Psychology Center had tremendous success with pain reprocessing therapy as reported in the recently published Boulder Back Pain Study, which also involved neuroscientist Tor Wager who is quoted extensively in the New York Times article. Buying into pain reprocessing is one thing when you meet face-to-face multiple times with a pain therapy expert like Alan Gordon, whom you come to trust and who repeatedly tells you that your pain is not due to actual or potential tissue damage, gives you reasons why, and tells you that you will be able to fix your pain problem. Buying in is quite another thing when you have no personal interaction with an expert and you are only reading a book he wrote. But it can be done. I completely recovered from more than two decades of low back pain by reading, buying into, and applying Sarno's Healing Back Pain. That was shortly after the book was published in 1991. I have since gotten into modern pain science in a big way and have had complete success with other forms of chronic pain that I had previously thought impossible to get rid of, and I did this without having any interpersonal relationship with a professional. I did it by reading, digesting, and applying what I learned from scientific literature about pain biology.

 

It only resembles it -- what a good way of putting it! That's going to stay with me.

 

@Ashley A: I do not have advice, because I am in a similar situation to you, but what Duggit says above seems right on, particularly with regard to optimism and trying to stay positive, hard as that may seem at times. I am there too (back and pelvis pain and weird leg feelings), and there have been days when I feel like I am close to just losing it (in the sense of just totally going into the freak-out zone). But then other days or times it can be better and I keep reminding myself of the cyclical nature of this process, that I am 100% sure it is TMS (which I honestly do feel, at least intellectually) and nervous system mis-fire. Anyway, I feel you in your post and just know you are not alone, it can and will get better, just witness the success stories.

 

Definitely reminds me of “a watched pot never boils” …I thought of you when I boiled water the other night ☺️

 

I definitely agree that optimism and trying to stay positive are two of the very best things you can do to both calm the nervous system (which will help to ultimately lead to rewiring of the neural pathways) and to keep your spirits high. I know am in a much better place when I have optimism and hope. Hope is a really big one for me - when I lose it I feel so low and empty, filled with despair.

I definitely understand the almost freak out moments, I have more of those when I lose hope and I have way less of them when I have more faith. Hope really is a big one for me. It’s easy for me to have it when I’m feeling better but not so much when I’m flared up like now.

I think where I struggle the most is with acceptance and letting go. If I could accept where I am at the moment and fear less and let go I do feel that I would see a big shift, and therefore have more hope again! It’s just really hard right now because I feel like I’m actually getting worse not better or even maintaining. But I try to keep reminding myself that TMS is cyclical as you said and healing is not linear.

I do need to read more of the success stories! Unfortunately my cynical mind always goes to negative places like that can’t be me or maybe they didn’t really heal but just said they did. Absolutely crazy, I know! It’s just so hard for me to believe that I could heal when I’ve felt pain for so long and don’t even remember what I felt like before all the pain.

Thanks so much for reaching out and sharing a little bit. Definitely helps to make me feel less alone!

 

I like this too! I 100% believe that I have zero tissue damage, (I know my body is completely fine) where I struggle is that my brain and nervous system are stuck misfiring and sending pain signals.

 

Sorry for my delay to your response. This flare-up is kicking my butt - not wanting to release. I got spoiled because my last flare-up only lasted about a week, this ones really hanging on!

I agree with you on the struggle of understanding the work and how our personality traits come into play in regards to TMS, but then actually being able to do the work - the struggle is real! I too have been going through a very stressful time in my life (both because of the pandemic and other circumstances) so I feel you there. Sorry to hear you are as well.

Yes, it’s crazy how it always seems so obvious from the outside looking in but hardest to apply the concepts to ourselves…but isn’t that the nature of most things in life!?

I’m glad that I could help you feel not so alone as you have done for me ☺️

I completely sympathize with you on feeling just a tiny twinge and then going right to a fearful state of mind. Definitely a habitual way of thinking - a programed response. It’s something I struggle A LOT with. I think it’s because of the story I’ve attached to it, not so much the pain itself. I’m working to override it by saying my positive affirmations anytime I feel a sensation.

What I mean by “annoying the neural pathways” is what both what you said - “something stressful happens and you get anxiety from it, that now you will set it off” and also that I feel like when I move more, put my body in certain positions, exercise I then feel more pain so I feel like I am aggravating the neural pathway by setting off my amygdala with fear and focus that I now feel because of the increase in pain. Whereas if I’m just sitting in one position or not moving too much I might have little to no pain, therefore I am not fearful and focusing on it.

It’s a bit confusing I know, but the fear is not that I will hurt the tissues (like I know it is for a lot of people) because I 100% believe that I am dealing with TMS and have absolutely ZERO tissue damage. It just seems like when I move more I feel more pain so then I get more fearful which I know is the fuel for TMS. So therefore I don’t move that much which also fuels TMS. I’m worried that all my fear when I feel an increase in pain (even though I know it’s not structural, just well worn neural pathways firing) will keep me stuck since fear is so bad for TMS. It’s really quite the cycle. Does that make a little more sense?

And I totally get what you mean by wanting “life to behave so that I don't react and set off my fight or flight.” I often joke with my husband that I feel like I have to be “bubble girl” that’s a joke referencing the movie Bubble Boy with Jake Gyllenhaal, about a young man born without immunities and raised in a very protected and closed off world. However, when he realizes that he's in love with the girl next door, he builds a mobile bubble suit (to protect him from the world) so he can chase after her. While it’s not what I want (and actually angers me because I used to be able to deal with all kinds of stressors in my life without pain before TMS) and totally impractical as you stated, but yet I do feel it it sometimes…if everything could just be perfect, if even just for a moment. Then maybe I could stay out of fight or flight and give my nervous system a chance to heal. But that’s not life so we learn to move through it, with it and learn from our triggers.

 

Oh man I relate so much to all you have said. The thing about setting off the neural pathways. So I've always had dogs. And as far back as I can remember I have heard that a dog knows you're afraid no matter how much you try to act like you aren't. That is how I feel with fear and TMS. It knows. I can tell myself I'm not scared but my brain or that part of my brain can just smell the fear. I know it! Lately I've been doing the somatic tracking and just admitting "yes I'm scared,. What does it feel like?" Then I sit there and explain out loud to myself where I feel the fear and how it makes my body feel physically. It also reminds me of the movie "IT." Pennywise the clown gets stronger and more powerful when the kids run from him. It's when they look at him and go towards him that he starts to shrink and lose his power. I drew a picture for myself to remind myself. I will try to attach it.

It's hard to see that at one point life was just going and you were in it handling it and all it's stressors and just doing life and now it's as if we feel fragile and well,. fearful like you said. You also are not alone in that. I worked at Cheesecake Factory for many years and was the closing server and training other servers. I was the go to person in very busy stressful shifts. I would be so crazy busy and keep my cool. I can't even imagine that right now. I often feel like "what the heck happened to me?" But like you and the other person said, I do believe hope is the thing that allows us to move forward.

Truly have enjoyed engaging with you! You have a way of expressing yourself in a way that really resonates with me. Great analogy to "Bubble Boy." I totally get that. When I feel like life feels crazy I will go sit in the bathroom for a few minutes because I figure not a whole lot can go wrong in there,. Haha!!

I did not do anything for years. Even washing the dishes or cooking or drawing would set my arms off. I had to ask the grocery stores to pack the bags extra light. It was as if my body was made of glass. And once I found out and accepted TMS vs structural, the pain diminished about 50%. Now I do a lot but I still have the pain and think "ok I know it's TMS and I'm working out, cooking, cleaning etc but now what?" To comfort you, I was pain free in May for one month. It was AMAZING!!! Then, we moved. Oh my gosh every part of my body was lit up in pain. I did not handle the change well and my body expressed it through horrible pain. I knew it was TMS so my mind was ok but it hurt. It lasted almost 3 months. Now I'm no longer in that flare. I still hurt but not like that. The only advice I can give you is your body hurts. Don't let it take your mind with it. You are not your pain. Soothe yourself, meditate, take relaxing baths. I watch what's called ASMR videos on YouTube. "Tingle Fix" is the lady I watch every night. It's super relaxing videos that kinda put you in a relaxing trance. Observe yourself without judgement. Watch your thoughts and emotional reactions and see what your body does. Flare ups suck, bottom line! I used my flare up to watch myself like a lab rat. Be curious about what's going on.
Much love to you! Keep chatting because I believe it helps. Don't stress on responding. Be patient with yourself. You have a friend here!
Nicole

 

Success stories: don't know if you are familiar with Georgie Oldfield, she is a physio and TMS practicioner in the UK who has an organization, see sirpa.org (also has a YouTube channel). On the sirpa.org under Success Stories there are a whole bunch of stories listed, maybe 50 or 100, you can even search them. I've watched a couple (I try to not do too much "TMSing" these days but the success stories do make me feel more hopeful). A very common theme in these people's stories is that many of them had suffered for years, felt hopeless, were in dark places etc. but did manage to turn it around, and now have the joy of giving back by telling their story. Even though for some it took time. So don't lose hope.

James

 

Thanks, James! I will definitely check out Georgie Oldfield and the Sirpa site! I also try not to do too much TMSing (to not get too obsessive) and also I am prone to manifesting other's symptoms when I read about them - that's why I actually stayed off of this site for a while after I manifested other's symptoms I had read about. It made me sad not to be apart of this wonderful and supportive community, however my bad flare-up brought me back and a positive thing about it bringing me back (not the flareup, that stinks) but I've found a way to engage with this community again - when I read others posts I skim over the part where they talk about physical symptoms and just focus on the emotional part. Kinda ironic as that is one of the key parts of TMS recovery - not focusing on the symptoms themselves but rather the emotional aspect.

It is hopeful to know that others (even the ones who suffered greatly) have still managed to heal! Thanks again for your support.

Ashley

 

Hi there!

I just wanted to say thank you for your very thoughtful response to my post. I just spent quite some time typing out a reply to you, however when as I was transferring it from my notes into here it got deleted. I don't quite have the energy right now to re-write it, but I will shortly.

Thanks again for your hope and optimism!

 

Ashley, I have (mainly) right sided issues. It’s been 10 years on and off and has melded into a lot of whole body sensations. I totally get where you are coming from. Keeping up can be exhausting. The daily ups and downs.
My latest is challenging myself mentally and physically - so a lot of symptoms are coming up. My ‘regular’ ones plus a lot of old ones that I had not previously thought of as TMS or had forgotten about.
Do you note what your mindset is on the “better” days? Are better days only lack of pain days? Yesterday I had pain and symptoms - had to lay down a few times but man, I was in a super awesome mood! I was HAPPY! First time in a long time! What a great day - even better than the relatively pain free day I’d had a week before. I’m slowly beginning to “get” the mindset that many who have been symptom free for a long time say is the key to wellness.

 

Hi Ashley. You may not remember me, but we had a few exchanges a while back now. I am glad you have posted your issues again on this forum, which like you I have been absent from for a while. It gives me the opportunity to make contact again. Our experieces are so alike. I fact identical! I did message you recently, to see how you were, but had no response.
I assumed you did not want to go over old and difficult experiences. I think it would be helpful for both of us to compare notes. It is always comforting to discuss this subject with s fellow struggling TMSers. Just to recap, I have also had this pain issue for three and s half years and mine is also in my upper back around my right scapula. Therefore I totally relate to you. If it helps, I can detail more by elaborating. It is pretty much constant with a few exceptional periods. It principally takes form of s deep dull ache on and around the inner edge of my right scapula, but more recently had spread on occasions to the left side and a bit lower on both sides. It can also feel very tight, tingly, sore after activity and sometimes a kind of stinging or may itch so it does change in its sensation. Maybe you can relate to this yourself?
Also I remember you had tried duloxetine and it helped a bit with the pain. I did too but weaned off, but now giving it another try at s higher dose , 60mg. It has not worked much so far though! Have you kept off the duloxetine? It is not a nice medication, but I had to try something! Also, I believe that TMS is really anxiety presenting with physical symptoms. Anxiety/ fear of the way you constantly feel and think about your symptoms is the driver of those symptoms. However, then the doubt kicks in again and again and the never ending cycle goes on and on. I know fore if I could accept the pain and other sensations and be indifferent, I would be cured, but in three and s half years I have not been able to achieve this? My anxiety physical symptoms are always highest when I first wake in the morning and I believe this is due to a normal peak in cortisol in the system. It would be good to pm with you to see how you are doing.
I have posted this hoping it gives you a bit of comfort knowing others have exactly the same symptoms as you, even though I have not yet found my way out of this complex problem. I hope you can resonate with my tale?
Best wishes Fred