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Getting out of comfort zone = Flare - Help!

Discussion in 'Support Subforum' started by MissShamrocks, Nov 30, 2014.

  1. MissShamrocks

    MissShamrocks Peer Supporter

    I started working with a TMS therapist about 6 weeks ago and started doing some journaling from the structured program as well as working on Alan's program. So far, I've been able to dig up some of my repressed emotions, which is course is uncomfortable but amazing at the same time. The one thing I was feeling last week was, anger that I wasn't one of the fortunate TMS'ers that was able to read one of Sarno's books and be pain free shortly after.

    I have a pelvic pain condition which causes pain when there is pressure put anywhere on my sacrum, sit bones, back of legs and genitals and let me tell you, having genital/sitting pain is the worst thing I've ever experienced as a TMS'er. I've had migraines, SI joint, low back pain, etc but nothing compares to it, so needless to say there is a lot of fear associated with it. I use a cushion to sit and even then I cannot sit for longer than 20-30 without pain, I stand a lot and social life and dating have been out of the question for the past 2 years. I want my life back and I'm trying to take it back as we speak. While speaking to my therapist this afternoon, she mentioned I may want to start trying some things that would be painful and uncomfortable to help battle TMS. So things like not using my cushion and doing things regardless of if it's painful or not.

    I do sit on a everyday basis and push my limits in that way but not aggressively as if I don't have pain, so tonight I decided I would take control and drive to go get myself dinner with no cushion. I did it, and it wasn't too bad. I came home and for the first time in a VERY long time, I sat on my couch and ate my dinner.. I did that as well. That was about as much as I wanted to push myself, so since then I've been laying on my couch in my normal position watching movies and oh boy am I in PAIN. I'm proud of myself, but I don't know if I can hang with this on a daily basis and not give up. I don't know if I can function like this. Curious if anyone has tips or tricks? The pain is excruciating :(

    Thank you in advance!!
     
  2. Walt Oleksy

    Walt Oleksy Beloved Grand Eagle

    Most of us, me included, felt pain sometimes each day while in the TMS and SEP program, and that is typical.
    You are doing the best thing... getting out and being active even in driving to get dinner.
    Try to distract yourself by watching movies. Anything that takes your mind off the pain.

    Don't be angry for not healing from TMS immediately after learning about it or reading Sarno.
    Those who do heal fast may miss out on the real benefits... discovering who we are and how to live happy
    and healthy... which comes from spending time in TMS knowledge and healing techniques.

    My tricks for healing were and still are deep belly breathing and mindfulness (living in the present),
    not thinking about the past or future.

    You're wise in working with a TMS therapist. He/she will help you to become a new, happier
    and healthier person.
     
  3. MissShamrocks

    MissShamrocks Peer Supporter

    Thank you for the words of encouragement Walt...Your replies always make me smile :)
     
    Eric "Herbie" Watson likes this.
  4. mc1986

    mc1986 Peer Supporter

    Hello
    I am in the exact same boat as you. I struggle to force myself to push my limits with sitting and activity levels. In the last 2 months I have had 2 days that were close to pain free where I could sit for hours. I hang on to these days as indicators that I will heal. One thing I found that helps me is I keep a list of reasons I believe I will get better. I track inconsistencies in pain and how it relates to my emotional state. I have finally given up on physical treatments as no one can find anything wrong with me other than me being in pain. My 2 good days came to an abrupt stop because a flare that was caused by a physical intervention. I just wanted you to know your not alone in your pain. Also if you run a search for pudendal you will find a thread that I think will give you great hope. It is a conversation between me and a mother who's son became instantly pain free after accepting the tms diagnosis. He had pn. One other I do that helps me (others may not agree) is I take pain medication when the flare up is really bad. It helps me to remain positive and focus on tms work. I have found several success stories of people being cured from pn using the tms approach. I have found zero people cured using physical intervention. If you go to tmshelp you can search pudendal and will find several encouraging stories. Hang in there you are not alone in this.
     
  5. Colly

    Colly Beloved Grand Eagle

    Hi Miss Shamrocks

    I've had this pain before and can remember a three hour trip to the hairdresser was agony. I was scared I had pain 'down there' too, but the pain passed eventually, once I brought my tension levels down and addressed what had brought it on... BTW I assume you've been checked out for anything else.

    Your pain coming on stronger after you challenged it (with success), is one of the worst things about TMS recovery, because you'd expect to feel better for having little victories, not worse. Next time this happens, just accept it. Even say it out loud. Talk to the pain in a calming manner and ask it what it's trying to tell you. Use calming and soothing affirmations to bring your tension levels down. Do this consistently/daily. Your body is stuck in a fear-pain cycle and will take some time to dissolve. Deep breathing, as Walt points out is such a simple yet effective tool. As you're deep breathing, imagine blood gushing to that area and cleansing it. Try to be aware of the tension you are holding there too. Also, journal about what was happening in your life around the time of onset.

    This pain WILL pass I assure you. Claire Weekes' book 'Hope and Help for your Nerves' would be beneficial to you at this stage.

    Colly
     
  6. stephb

    stephb New Member

    Hi, I'm the mom whose son is 70% cured from pelvic pain using TMS. There is a 3 page thread a few threads down where I wrote (a lot - it was therapy for me :)) about my son and his journey with TMS. It was started by mc1986, above.

    Basically, if he were to push himself like you did to go out and get dinner and ignore your pain, and he had a huge flare up afterwards, I would try coaching him through it and tell him that it's no wonder he had a flare up, because he's conditioned to expect the pain after doing something stressful.

    I wonder if your flare up is because of the fear of the pain coming back after you pushed yourself - a self-fulfilling prophecy if you will? You were scared that going outside of your comfort zone would cause excruciating pain and so it did.

    I'd also ask my son if he was angry about something at this moment. Is there anything that's pissing you off right now, no matter how irrational or childish or illogical? Like, are you mad that just going to get dinner isn't a simple thing for you like it is for many people? My son would get angry about stuff like that.

    The other thing I'd do is just keep telling him that the pain is going to go away, that it's not damaging him or serious no matter how much it hurts, that it's just muscle tension and lack of blood flow. I'd tell him to visualize his muscles relaxing and the blood flow returning to the area.

    If he panics and freaks out and says the pain is really, really bad, I give him a Tylenol with codeine (they're OTC here - low dose). He doesn't need them very often at all anymore - one every few weeks maybe.

    Finally, he distracts himself by playing this computer game that he finds really comforting. It's always the same one and he can just get into it without being stressed by it, and forget about his pain.

    These days if he has a flare up, the pain usually goes away in a few minutes. It's rarely a level 10, and it used to often get to a 10. He is really learning to control the pain and it quickly goes away. I am amazed, its like a miracle.

    If you have any questions, feel free to ask. I hope your flare up is over by now.
     
  7. Mala

    Mala Well known member

    Excellent post stephb. You have given some excellent advice that is really useful & helpful.

    Thanks.

    Mala
     
    MissShamrocks likes this.
  8. labrador

    labrador New Member

    Hi Miss Shamrocks, I had exactly some of the same symptoms as you. I used to use a cushion to sit to get through the day at work & stopped going out just because it was too painful and difficult. I'd just cry when I got home. On reading Sarno / posts on this forum - I started to follow the advice, the things which helped me were:

    I started to sit without my cushion - at first I could only manage 5 minutes before the pain would kick in but now I can do the whole day at work with only the odd twinge in the tailbone. I did it gradually.
    I used the same approach to exercise I started with workout DVDs at home and would just do a few minutes to begin with and a low impact version of the exercise. Gradually I worked my way back to normal.
    I started going out again.
    I found that I'd get a flare up when I tried something new - I've recently started tai chi & got a flare up after the first class but now I'm fine.
    I'd talk to myself / the pain sometimes in a soothing way; sometimes in an angry way - along the lines of - "I know it's just TMS you're not going to stop me etc. or swear at it or I'm ok this will pass it always does" This worked for me and can sometimes just drive the pain away. I started meditating and trying to catch my negative thoughts and change my thought focus. I visualise myself having a relaxed body and calm open pelvic area! I started to accept the pain rather than fight it. I stopped stressing about what was causing the pain. I did the SEP. So it's a mixture of things that helped me. Don't give up its really difficult but you can get there.
     
  9. Walt Oleksy

    Walt Oleksy Beloved Grand Eagle

    I'm glad my replies bring smiles. I'm not a very scientific guy. I healed from TMS back pain by keeping it simple:
    It was caused by repressed emotions going back to my boyhood. My parents divorced when I was 7 and that led to
    more fathers and repressed anger. I find it most helpful to practice deep breathing, living in the present, and laughing.
     
    amagnuson amy and MissShamrocks like this.
  10. MissShamrocks

    MissShamrocks Peer Supporter

    It's interesting that you mention zero people being cured of PN or other pelvic pain conditions using physical intervention, because of all the pelvic pain patients I know (and there are a LOT) I don't know anyone who is 100% cured, which is why I'm convinced (unless PN is entrapped) pelvic pain is TMS. I'm with you on taking meds when needed, there is no reason to suffer and everyone's journey is there own. That is WONDERFUL that you've had times where you could sit with no pain. Amazing! And congrats! Do you also use a cushion to sit?
     
  11. MissShamrocks

    MissShamrocks Peer Supporter

    Hi...Yes, I've been checked and checked. Probably have seen 15 Dr's of different types and it all leads back to "You have SI joint dysfunction and tight pelvic floor muscles" I've been in PT for 7 months, tried blocks, I am on meds, had a ketamine infusion and the list goes on. I was VERY happy to hear that I DO have hope in healing and I truly believe I will, it's just going to take some time and patience, as you know, is the hard part. Thank you so much for the ideas, any are welcome!! :)
     
  12. MissShamrocks

    MissShamrocks Peer Supporter

    70% is amazing considering most who haven't discovered "TMS" don't have that much luck! I am happy for BOTH of you! I can imagine how hard that must have been for you, seeing him suffer. What wonderful Mother to have researched everything!

    The visualization is a great idea, I will start doing that as well. I think connecting with emotions, like fear, anger, etc are important as well. I had a migraine today and I knew why (tension) it happened. I also believe it's an extinction burst, I sort of laughed it off, and the pain wasn't too bad. So I'm finally starting to see the improvements, no matter how small they are right now. And the flare from the other night has calmed down, thankfully! Thank you for your response, I hope your son continues to improve and I will look to find his story :)
     
  13. MissShamrocks

    MissShamrocks Peer Supporter

    I think gradual seems to be key with trying these fear provoking things out. How long did it take you to get to being able to sit as long as you do?
    I do the same as far as talking to the pain. Sometimes I yell at it (thank GOODNESS no one can hear me, they'd think I was off my rocker for sure - haha!) and other times I soothe it. What were you originally diagnosed with before learning of TMS?
     
  14. Mala

    Mala Well known member

    Hi stephb. I have just been thru yr posts on the link http://www.tmswiki.org/forum/threads/new-guy-with-lots-of-questions.6315/page-3#post-37778 & they are some of the best I have read here. There are 3 things that stand out. Your understanding & knowledge of TMS, your 100% acceptance of the fact that what yr son has is TMS & the way you have applied what you have read & understood so successfully to yr son's condition.

    Many people here talk about the theory & the general idea of TMS but what you have done is that you have actually been able to explain so very clearly the actual steps one must take for this very specific condition. You have taken the guesswork & uncertainty away by outlining what I think is a brilliant plan not only for the person who is in pain but you have also included a section on how to elicit help & support from say a partner or a family member. I printed the entire link with all the posts & handed it over to my husband to read as homework. He's always asking how he can help- well now he can .

    Your son is very lucky indeed and I have no doubt that you will see him only get better & better. Once he sees his own progress & develops better insight & understanding into how TMS affects him, his personality & his pain he will have better control over the outcome of what happens.

    In the meantime pls keep posting & sharing with us here.

    All the best.

    Mala
     
    Eric "Herbie" Watson and Ellen like this.
  15. labrador

    labrador New Member

    I think about 8-9 months it was in stages. Some days I found I could sit for the morning without the cushion - others I couldn't but gradually the overall trend was good - so I can now do a day which just some minor twinges round the tailbone.
    Originally I went through a battery of tests which were all clear and was diagnosed with vulvodynia, irratible bladder & IBS. The pain then spread out into my tailbone, legs, lower back. My GP said it was normal that once you had pelvic pain that it should spread like that. I did a year and half of PT (with 2 different physios) who said my pelvis was mis-aligned, tailbone was mis-aligned, stiff lower back, mid back etc etc. They did corrections to both but it didn't help with the pain. I've now realised that it is all down to really tight muscles caused by tension in my mind. In fact when I calm I can feel the muscles release out which is a lovely feeling.
     
  16. mc1986

    mc1986 Peer Supporter

    Miss shamrocks
    On a day to day basis I sit with a cushion in the car. When I'm home I have developed a weird way to sit that makes it manageable. In the last two months I have had 2 days where I could sit for hours without a cushion and almost no pain. Very strange as they weren't tied to any medical procedure and there was no reason for me to feel good those days. I used to think caudal blocks helped but think they were more of a placebo effect. Good luck.
     
    Mala likes this.

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