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Long-termer feeling a bit stuck

Discussion in 'Support Subforum' started by Tomi, Jul 20, 2023.

  1. Tomi

    Tomi Peer Supporter

    I have been on the journey to recovery for more than 4 years. I have posted a few comments on this forum, but never had the courage to write about myself and ask for support. Lately I have been a bit more active on the forum and have seen so many kind and wise comments and suggestions that I felt encouraged to come out of my safe place and open up.

    My diagnosis is hypermobility spectrum disorder by one rheumatologist and myofascial pain syndrome by another. My problem is back/hip/buttock pain every night. I used to have pain during the day too to a lesser degree and that is 90% cured. In fact, that got better within about 6 months of this work, I would say. The nightly pain and the resulting lack of sleep is the one that generates fear and probably that is instrumental in the fact that it is taking so much longer to resolve.

    Over the course of this journey I have tried many things – I have completed an online TMS course (in the UK), then part completed Howard Schubiner’s ‘Unlearn Your Pain’ programme (part, because a lot of it overlapped the first programme I did), I have done lots of journaling, meditation, have had a few coaches and psychotherapists of different schools for short periods, have even tried Dynamic Neural Retraining (DNRS) for 8 months. At times I felt I was better (I had a glorious symptom-free 10 days last year and a week of almost no pain a year earlier) or 80-90% better, to then sink back low again to feeling like I have made very little progress. Currently I’m in the latter situation. However, mentally I am much much better than when I started. In fact, that has been a big win.

    The reason why I’m writing is to ask the long termers how you keep your belief and motivation alive? As time goes on, I fall into doubt so many times and have to find ways to reassure myself with evidence lists and pain science and so on over and over. I almost think there should be a special programme for those of us who have been working on this for years. For example, short recovery stories were motivating at the beginning, but now I find them depressing. I tried restarting the online programme I had done before, but that depressed me a bit too and made me feel like a failure. What would you suggest? Should I try a different programme?

    Currently I meditate daily, do breathing exercises, sometimes I journal, but not very often any longer. I seem to have run out of things to journal about. I try to catch negative thoughts and reframe them, but don’t always succeed. I am quite active during the day, except for when I’ve had a particularly bad night and I’m too tired. I have very little stress in my current life, other than the TMS symptoms themselves.

    Recently, since coming on to this forum a bit more and reading the posts here I have become more motivated again, started listening to more podcasts, increased my mediation practice and have decided to start journaling regularly again. I am not sure what else I can do. Should I just keep at it and believe that the unconscious mind is changing? Any ideas? Is there anyone out there who took longer than four years to recover?

    I would so appreciate any comments you may have and thank you for reading this long post.
  2. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    @Tomi , I totally, 100% get you. I've been doing this since 2011 (when I was 60), and I had reasonably quick success from doing the SEP and strengthening my mindfulness about the inner negative dialogue. But it's always been up and down ever since, because, you know what? IT'S ALWAYS FUCKING SOMETHING.

    From 2012 to 2014 I was dealing with three tragic personal losses of loved ones, although my TMS work really helped me to acknowledge and accept my emotions. Things were better for a very short time, until 2016 came with growing societal dysfunction, which has done nothing but relentlessly get worse ever since, never mind the shitpile disaster of the pandemic. The stress of a volunteer job that was severely impacted by the 2020 shutdown resulted in a diagnosis of full-blown RA with no other explanation, and I'm still dealing with that.

    AND, realistically, aging doesn't help. There's a reason we get Medicare health benefits in the US starting at 65! Aging issues remind us of the inevitability of our mortality, which is a well-acknowledged source of repressed rage. It's a terrific topic for journaling.

    That's a pretty brilliant observation! And without such a resource, what do we do?

    I do find regular inspiration from podcasts. My weekly go-to is generally Nicole Sachs, who almost always provides me with a new or renewed nugget of inspiration. She's the one who reminds us that there is no cure for life, and there is no escape from pain, but that we do NOT have to accept a life with chronic pain.

    I am convinced, quite rationally, that a regular and committed practice of daily meditation would make an enormous positive difference in my well-being. And my TMS brain continues to resist. It's absurd. It's completely irrational. I can see it happening, and I laugh. And do nothing. Eesh.

    However, one thing I have always found effective is bedtime visualization, self-talk, and breathing. You might try a visualization of sleeping through the night without pain. It doesn't have to take long. Find a therapeutic breathing pattern that is relaxing for you and practice that with the visualization. If you wake up with pain, do the breathing and tell your brain that the pain is totally unnecessary because you are nice and safe and it's okay to go back to sleep.

    In fact, breathing is the one thing I've been managing to consistently practice a lot more, and it's been particularly beneficial for better digestion, a lot less reflux, and for getting back to sleep if I wake up.

    Hang in there! Always remember how far you've come, and face the setbacks with curiosity and self-compassion instead of pressure and judgement.
  3. Baseball65

    Baseball65 Beloved Grand Eagle

    I haven't needed to. The occasional symptom has done it for me!
    THAT is a trap I fall into a lot. It also usually isn't true. Yes, I bore the tears out of me, but it's usually because I don't have the impetus to push a little further into subtleties..that would go back to the pain motivating me to sit a little longer, dive a little deeper. I get most of my cues and questions from the text of Sarno. There is actually a LOT of junk in there.
    Same as above. I THOUGHT I had very little stress.
    One new thing I have been trying is the Gordon question from here: https://www.tmswiki.org/forum/threads/day-5-changing-your-brain.16477/ (New Program - Day 5: Changing Your Brain)

    I normally focus on RAGE because as a male it is so much easier for me to tap into, though it is synonymous with Fear. I have been trying this and it seems to help...literally stopping and asking myself "What am I afraid of right now" and adding one question "Why?"

    Now that I am older I don't have the burning passions and crumble the world anger I had in my thirties. I have become so stoic that I got a TMS relapse!

    When I was younger it was usually some drama I was mad about....personal relationships, work, Baseball game outcomes, personal performance... Now that I am old it is "Hey... I am old and boring and nobody gives a damn about me and I am going to die soon...quietly" I literally just got a shot of pain typing that sentence (LOL)

    I got the same symptom you speak of. Trying some new stuff has kept it at bay. The Fear thing has really helped. Having been pain free for the Lion share of a quarter century, my only gripe with Gordon is teeny little Nocebo's hidden in the "It's OK to have pain".. if it was OK, I wouldn't be here reading your schpiel!!!!

    I am also impatient. I could barely sleep last Sunday Night because of discomfort...then Yesterday I got really Angry/Afraid because I couldn't quite sprint full speed to my Truck when I forgot my wallet at home depot!

    Yes, sometimes I am a bit loathe to ask for help because I have been pain free so long ; "I oughta' know better... I don't want to discourage the new people"... Pretty Ironic?

    The most important thing seems to be to keep asking yourself questions,,, the old ones and the new ones.

    Personal relationships (or lack of)
    Finance (or lack of)
    Performance ("" )
    Security ("")
    FAMILY...even really old stories. We never seem to outgrow them
  4. Tomi

    Tomi Peer Supporter

    @JanAtheCPA thank you SO much for your response and understanding. It has helped me a lot to know you get it, and that I'm not alone, although I am sorry that you are experiencing the same up and down journey and also about the RA diagnosis. I am also really sorry for your losses of loved ones. That must have been really hard. I agree that the world situation is all shitty too and that doesn't help at all.

    My TMS journey started when I was 59 - now 63 - so very similar staring age to yours too! Though I am not entirely sure that this has much to do with age, apart from more time for the neural pathways to be conditioned and more stuff to accumulate in the unconscious brain. Because I had these very same symptoms when I was in my early 40s for 2-3 years. At the time I didn't know anything about John Sarno, so I had lots of physical treatments and I thought the problem had resolved thanks to finally finding a good osteopath. In fact, now I know that the ending of the symptoms coincided with the end of an extremely emotional and stressful relationship situation in my life at the time... But yes, I do think it might be more difficult for older people to recover due to all the junk that has built up in the brain over time and you are so right about the growing underlying fear of death/ awareness of our mortality as time passes. That reminds me: Dan Ratner of Crushing Doubt has a video on night pain where he says that fear of our mortality can be a reason for night pain. Interesting theory. When I watched it, I was just so happy that somebody was talking about night pain. That was enough to validate my experience and felt good to me.

    Thank you so much for your suggestions. I will try to visualisation before bed with breathing. I did that in the past and it helped me a lot, but then it seemed to stop working. I think revisiting that strategy might be a good idea. There have been periods in which I could go back to sleep again after self-talk and breathing when I woke up at night with pain, but now that doesn't seem to work either. I usually have to get up and do somatic tracking followed by heartmath breathing which helps, but again not always. Sorry, don't want to bore you with all the things I have tried, but the inconsistency is very demoralising. But maybe this is also something to do with doing this stuff for so long - the mindset or the energy behind all of these activities change over time from hope and belief to something akin to desperation, though not as bad as that. (another topic for a special programme for long-termers!)

    I have started listening to Nicole Sachs podcasts, after, I think, you were the first one to recommend Mouse's two episodes on this forum. I thought they were amazing and so inspiring! Can you recommend any other particular episodes from Nicole Sachs? Especially long recovery stories? There are so many of them, it's hard to know which ones to select.

    Thank so much again. I almost regretted posting after I did, but your reply has lifted my spirits. Sending a big hug.
    JanAtheCPA likes this.
  5. Tomi

    Tomi Peer Supporter

    @Baseball65 thank you very much for taking the time to reply. I'm sorry you have a TMS relapse. I hope it doesn't last long. I think this happens to a lot of people who have recovered, but it passes quickly, if you don't give into fear. That's what I have read on many posts anyway.

    Your observations are really helpful. It's comforting to know that you had the exact same symptoms and recovered. I also agree that fear plays a huge role in my symptoms too.

    Thank you for sharing the link from Alan Gordon. I will check it out.

    I think I will also have a go at digging even deeper when journaling. My TMS journey started 2 months after my father died and there was a lot to journal about in that first period. And sometimes it worked like magic. I have tried to dig very deep over the years, but probably there is still more junk, or the same old junk that needs attention again. Thanks for your suggestions on how to get to things to journal about, including new ones. It might be that I have not paid enough attention to day-to-day little stressors that build up. I will try.

    Thanks again and wish you a speedy resolution of your relapse!
  6. Baseball65

    Baseball65 Beloved Grand Eagle

    My Dad died when I was 5. My nanny who raised me died a few months later. Had my first real TMS attack at age 6 when my Mom left me with a sitter to go on a months long trip...Neck froze with excruciating pain. ..so probably a few months after the deaths. Abandonment issues!

    Grief is a HUGE TMS factor. I have to review that every single time. Unlike a problem at work or a bad financial run, it's deeper.

    I once heard "God can help you with grief and sorrow, but Anger? You're on your own"
    When I can let it be sorrow, I am OK...when it makes me mad, I have work to do. Paperwork

  7. Cactusflower

    Cactusflower Beloved Grand Eagle

    Few things on what @Baseball65 and @JanAtheCPA have said, that helped recently.
    There is a Nichole Sachs podcast Jan recently posted about Mouse, a long time tms-er and patient of Sarno’s. Her analogy of journalling was a revelation to me. I had read in several places not to get stuck journaling the same “boring” stuff: Nichole explains that if the same subject keeps coming up, it’s because you need to go deeper.

    I also just read a recovery story about a person who struggled with meditation. They did MBSR and had to start with 5 mins twice a day to begin to get the skills and focus/refocus. Gradually increasing to 20 mins once a day until they can do a much longer session once or twice a week on top of the daily 20 minutes. They also had to learn best time of day to focus.
    Just little things that can help us refocus or gain insights.
  8. Tomi

    Tomi Peer Supporter

    @Baseball65 that is awful what you experienced as a child. No wonder you have had TMS. It was complicated with my dad. I was full of grief and anger when he died - anger for the way he treated my mother and brother. My mother is approaching 100 now and is bedridden. I am not in the same country as her and that is also a big factor now. I'm incredibly attached to her, to the point of identifying with her suffering at all times. Having said I had no current stresses... :) But I journaled about this so many times. Maybe I have to do it again and again. It's painful.
    Peace to you too.
  9. Tomi

    Tomi Peer Supporter

    Thank you Cactusflower! Yes, I listened to the Mouse episodes and was so inspired. What you said about her comment on journaling also struck me, as I was also told that after a few times you should let a topic go. But apparently not.... I think I will go back to some big ones.
    Thanks for the comments on meditation. I had to find the best time to focus as well, because I get so sleepy, due to my lack of sleep, at particular times of day. I think I'm finding my way around this.
  10. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Another recent one that was terrific was a guy, Gary? who recovered from disabling Long Covid.
    Edit: I tried my suggestion of doing a keyword search for Posts by me with Nicole in the thread title, but it was not helpful so I edited out that suggestion.
    Last edited: Jul 21, 2023
  11. Cactusflower

    Cactusflower Beloved Grand Eagle

    I have a book series by a woman who took 10 years to recover from a multitude of symptoms. She was a physical therapist and did not follow Sarno (I don’t think she knew about him), but her story is amazing. It is very alternative: reiki, quantum physics/psychology, self-exploration, but mainly mindset. Here’s the author link:
  12. Tomi

    Tomi Peer Supporter

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