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New here, and new to everything TMS. Would love some support.

Discussion in 'Support Subforum' started by Hopeful22, Jan 13, 2022.

  1. Hopeful22

    Hopeful22 New Member

    Hi Everyone,

    So glad to have found this site, and so thankful for those who created it and those who continue to help others here.

    Just a brief history -
    I underwent fusion surgery of my lumbar spine (L4, L5, S1) 4.5 years ago. I was doing really well. Not much pain at all, until this past May. I kneeled down and bent forward and felt a bad twinge in my lower back on the right. The pain continued to worsen as the day went on and by the evening, I was down for the count. I was in terrible pain and even breathing hurt. I was like that for almost two weeks and then started to feel a little better. But, the pain persisted and I was worried that something happened with the fusion, so I went to see my surgeon. The MRI showed normal, no nerve damage, the fusion looked fine. He said it was most likely my SI joint, as it is common with "successful fusion surgery". The SI joint looked fine, though - no arthritis, etc. He said that most of the time, it resolves within 3 months. A month later, I was still basically bedridden. I was not in much pain while lying down, but getting up and moving around, standing, sitting was torture after only a few minutes. I called him about getting an injection and he agreed. The injection in the SI joint did NOTHING. He put me on a prescription NSAID which also didn't help. He then said I should see a physiatrist, which I did. I saw him for almost three months and it didn't help. The physiatrist put me in PT, and after two weeks, I felt much worse. I left there and went to another PT, and after just one week, I was even worse. Throughout this time, I couldn't take anything for the pain, as opioids make me really sick.

    I found a woman online who had SI joint problems and she said only a PT that understands SI joint alignment could help, but they were difficult to find. It took another month to find a PT that understood SI joint problems. My third PT began to tell me that structurally I was fine, and that fear was keeping me in the condition I was in. She recommended I read Healing Back Pain by Dr. Sarno. It made me mad that I went to her for help in aligning my SI joint and she had me read a book instead. I am so thankful for her! As many of you experienced, I saw myself on every page and I finally had hope after 8 months of despair and really not wanting to live anymore.

    Two weeks after reading the book, my pain reduced by 50%, and then in another week, it was down by about 70%. I used to be down most of the day, but now I'm up most of the day. I can even sit for almost an hour with little pain. I am walking around and even cooking again. I went out to the grocery store with my husband for the first time and felt very little pain. I am 95% convinced it's TMS, but I am still afraid to bend forward. I get a sharp pain when I do. Also, the in the last couple of days, the pain comes raging back on and off during the day. It's in my right lower back, along with a burning pain in my groin. I am on Day 11 of the Structured Educational Program, and I am journaling. My main problem is being a goodist and people pleaser. When the pain comes, I immediately stop and think about what could be bothering me. It's always about a person I am close to, worrying about whether or not they are angry with me, or I've done something to upset them.

    Anyway, sorry to be so long winded, but my question is, how am I doing? I am expecting too much after only 3 weeks? Is is normal for the pain to come raging back after feeling mostly pain free?

    Thank you all for any advice/support you could give me.
  2. Cactusflower

    Cactusflower Beloved Grand Eagle

    Hi @Hopeful22
    You are doing so well! So much progress on 3 weeks!
    Your physical sensations are pretty normal. There are many People who’s symptoms recede only to surface again. It means you need to continue TMS work. You are not done yet, even though you have amazing insight. If you are worried that someone is angry with you, how does that make you feel? Right now you are merely cognitively or thinking about the situation, and Dr. Sarno reminds us that TMS is emotion based, so try and feel the emotion this brings up. You’ve already mentioned fear (of symptoms) under the fear? Under that? Layers of feelings.
    Are you constantly vigilant of monitoring the feelings of others? What you project onto those people may actually be the mirror of how you subconsciously feeling.
    Eg. I woke up at 6:30 am today to hear some cursing. “What happened. What did I do?” is my first thought. (Rarely do we curse or get angry here!) Then 15 minutes later the vacuum and my cat cowering on the floor beside me looking worried. I try and soothe her and then think: she is fearing. I was fearing! I let myself feel that fear, and then my hubby explained the cat had vomited in a difficult to clean place. He was frustrated waking up to the mess.
    So why was I afraid? That I had done something wrong? That I was made to feel like it was my fault AGAIN? That I do things wrong so I am unloveable? All of this is irrational of course. Was it anger I was woken up so early and made to feel afraid immediately again? (Since I wake up and start fear thoughts of my own each day already, surrounding symptoms). Feeling anger towards loved ones is really hard for me, Fear seems safer to my brain, so I know I’m repressing the anger. Then I feel guilty I am even angry or fearful over something so small..
    So keep reaching into those things you know are happening. If you like to journal, try digging deeper. You may resist going deeper but stick with it.
    You are making great progress. Don’t measure it in time. Think about the quality of YOU you are uncovering as your success!
    Your PT is amazing!!!
    I listened to this. It helped me ask myself questions. Do not expect immediate answers. Just keep asking, over time it will come.
    Last edited: Jan 13, 2022
    Mr Hip Guy and Hopeful22 like this.
  3. Hopeful22

    Hopeful22 New Member

    @Cactusflower Thank you SO much for taking the time to respond with such helpful encouragement! You nailed it. I definitely have to dig into my feelings rather than trying to figure out why I'm in pain. I've been told I'm an empath, so I'm constantly checking in with the feelings of others, to the neglect of my own. Gah! It's so hard to care about my own feelings. This is a whole new way of thinking for me.

    Yes, she is a truly amazing PT. She was so intuitive with me right away. She knew.

    I will be watching the video - thank you for sharing it! :)
  4. Mr Hip Guy

    Mr Hip Guy Well known member

    In my experience, it's very normal for the recovery to come and go, but with a generally positive direction. One thing that may help you is to recognize that your knowledge of this condition has already caused a drastic reduction in symptoms, that's clear evidence that it's TMS! I personally like to keep pro/con lists for "why it's TMS" so I can keep referring back to them when I am having a down cycle. maybe that would help you as well.
    Hopeful22 likes this.
  5. Hopeful22

    Hopeful22 New Member

    @Mr Hip Guy Thank you for your encouragement! Great advice! I have to remember to add things to my "evidence sheet". The pain so easily makes me forget my progress.
    Mr Hip Guy and fridaynotes like this.
  6. Shaw

    Shaw New Member

    I am very much interested in your post. I too had a fusion l3-l5 about 3 months ago. At first I had severe pain because I shied away from opiads. Eventually the pain diminished for several weeks. Later on it returned and seemed to get worse, so I began journaling, read all the Sarno’s books, worked on some of the programs on the wiki site and did much more. I am running out of things to try. Am sure it is TMS.
    I am hiring a coach who has been thru all this. I want to follow your experience. And if you find solutions I would want to know. And I do believe I have TMS and what you do can reinforce my belief and understanding.
    Hopeful22 likes this.
  7. Hopeful22

    Hopeful22 New Member

    Hi @Shaw

    I was pretty sore for several months after my surgery, so at three months post-op, I think it's pretty normal to have pain. Give yourself some time, and don't get too discouraged. You said the pain diminished for several weeks before returning. From what I have learned so far, I would think that's a good indicator that you have TMS, but others more knowledgeable can chime in.

    I'm currently reading through The Great Pain Deception by Steven Ozanich. He not only details all of Sarno's teachings, but he shares his own battle with TMS. He also guides you on your own journey with TMS. I highly recommend this book!

    In the past week, I have been pushing myself to do more, and it is definitely helping me to overcome my fears. Just today, I went out shopping for our daughter's birthday, and I walked A LOT. Before, I would have been terrified to walk that much, because I was convinced it would increase my pain, and I would be down for the count. But, that isn't happening. As I slowly return to normal life, my brain is settling down, and my fears are diminishing. I am still guarding my movements, but not as much. I'm taking it slow, and that's okay for me, as long as I push myself a little more each day.

    Did your coach have fusion surgery? If so, I'd love to hear how they are doing. I don't read about too many post fusion surgery TMS stories here.

    I wish you all the best! We can do this! :)
  8. Shaw

    Shaw New Member

    Glad to hear from you Hopeful22.

    No there aren’t many posts from people with fusion surgeries, or any surgeries for that matter. I read Ozanich and it was an extreme example of TMS, but maybe that doesn’t matter.
    Fear is the big emotion to overcome and I have plenty. I have yet to figure out what my suppressed emotions are. My TMS symptoms are so strong it is hard to believe that it’s not a structural problem. It looks like you went several years after surgery with few problems. That is amazing. Something must have touched it off and if you can find out what you will know what to work on.
    I’m just starting with my coach so I don’t know what to expect. Hopefully I’ll have something to report in the near future.

    I’ll be talking with you later and good luck
    Hopeful22 likes this.
  9. Hopeful22

    Hopeful22 New Member

    @Shaw As I am finding out, everyone has their own path and time frame for healing from TMS symptoms. I think one of the biggest issues with many who have TMS is lack of caring for yourself. Taking care of ourselves is such a foreign concept, but I believe it is vital to our healing. We have to learn to listen to ourselves, and what the pain is saying deep down. I marvel at those who get healed of pain simply by reading Sarno's books. But, I'm okay with taking it slow. It took me over 50 years to get to this place, and a little more time is okay with me. :)
  10. Shaw

    Shaw New Member

    To hopeful22:
    It has been awhile since I heard from you. Don’t know you are handling TMS, but your case is similar to mine, if you recall. I would like your email address so I can say things unrelated to TMS. My email is sfm1200@hotmail.com
  11. Hopeful22

    Hopeful22 New Member

    Hi @Shaw

    I am doing really well! Pretty much resumed normal life. How did it go with your coach? PM me, please.
  12. Shaw

    Shaw New Member

    I have a good coach but have not shown much improvement. I am still hopeful.

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