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Please Help With My Me/ CFS ( Tms) Ussue

Discussion in 'Support Subforum' started by music321, Aug 10, 2023.

  1. music321

    music321 Well known member

    Hi, I hope you’re all doing well. It has been a while since I posted on this forum. I have been diagnosed with ME/CFS. This is a condition that can be cured with Sarno’s approaches, but has some physical elements to it. It seems the way to get through ME/CFS is to adopt a mind-body approach, first and foremost, and then do other things to calm down the nervous system. The nervous system cannot be overstimulated, nore can the body. There are issues involving limited ATP production. When people push too far, they often have symptom flareups. It’s debated whether these symptom flareups are the result of pushing too hard, or one’s attitude of striving and perfectionism. One key feature of ME/CFS that differentiates it from run-of-the-mill TMS is that during periods of heightened stress, the body simply cannot put on strength. In fact, it does not matter how hard one pushes and attempts to accomplish tasks, they simply become impossible.

    I’m in very bad shape this point. I am in a nursing home, and get help with many tasks related to personal care. I recently hurt my arm and hand, which has the potential to make me even more dependent. This would be horrible, considering the level of dependency I’m already at. I’m debating whether I should simply push through these things, assuming they are not real injuries.

    Some background: Anxious to get as strong as possible as fast as possible, I was working out heavily, relative to my strength. With a physical therapist, I was doing arm exercises that were so intense that my arms were shaking uncontrollably. The physical therapist assured me that this was not a problem. After having left physical therapy, I felt fine. I was engaged in some manual activity about eight hours later, and felt some pain in my forearms. I stopped the activity immediately. I went to bed shortly there after. Upon waking up, my arms felt completely drained of strength. This is not uncommon with ME/CFS, and it’s called post exertional maliase. With my arms in this very weakened state, someone shook my hand. At this point, I felt a tremendous surge of pain through my right forearm. It’s taken weeks for my arms to calm down. Even though my left arm was just used heavily, it was in pretty good shape compared to my right arm. My hands were not affected. Recently, I did a physical therapy task, (hand dexterity exercises), causing me to use my hands quite a bit more than I had been the past few weeks. Interestingly, I experienced no increase in pain during these tasks. However, about 15 minutes later, I experienced quite a bit of pain in my right arm, my right hand, and pain to a lesser degree in my left arm and hand. Given that the pain did not manifest until 15 minutes after having stopped the task, I’m thinking this might be neural plastic pain, as opposed to something indicating tissue damage. What are your thoughts?

    Additionally, I feel like I’m about to go out of my mind, lying down in a hospital bed in a nursing home all of the time. What I would like to do, assuming it doesn’t destroy me by straining multiple muscles throughout my body, is simply sit up as much as possible, until I am on the verge of collapse and musculature develops triggerpoints. Additionally, I would like to walk until my feet and legs are in tremendous pain. To clarify, I’m not a masochist. I simply need to get over this hurdle in my life and get back to living. I feel that by pushing myself tremendously hard, this might be realized. Also, I feel that by pushing myself into this point of pain, my nervous system might get the idea, that there’s no real problem, and the pain might subside after a few weeks.

    I feel that by doing this, I might actually make some real progress in terms of strengthening myself, and cause my nervous system to realign. However, my gut feeling is by doing this, I would just make be making my situation profoundly worse. If anyone has any comments on this, please let me know. Thanks.
  2. TG957

    TG957 Beloved Grand Eagle

    As someone who had experienced CFS on and off throughout my life and especially during my healing from CRPS, I can tell you that you are not following the Sarno's mindbody approach, I don't see anywhere in your post that you are working with your mind and your emotions.

    All the above is what makes you even worse. You cannot set a deadline for TMS. You cannot fight your way against TMS like a boxer in a match. As a matter of fact, the enemy you are punching in the jaw is your own body and mind. You are anxious, angry and fearful - and you have to start working with your emotions, recognizing them and healing from them. My advice, as ridiculous as it may sound to you is to stop forcing exercise on yourself with all the anxiety and anger, and get Kristin Neff's book on self-compassion instead. Do not just flip through the pages of her book; you must read, reflect, analyze your behavior and daily routines from the viewpoint of self-compassion.

    This one is especially profoundly wrong:

    Your nervous system is shutting down exactly because it is overstimulated. From my personal experience: I could be exhausted after a poor sleep at night and many things I have to do to get through the day. But a 45-60 minute meditation leaves me fully refreshed and full of energy again. Again, meditation must be done right, with self-compassion and mindfulness, not as a boxing match against yourself.
    JanAtheCPA likes this.
  3. music321

    music321 Well known member

    Thanks for the reply. I agree, the nervous system certainly can be overstimulated. I have missed written that. I was speaking this in with a microphone, and somebody was helping me. As far as stopping exercise completely, I can walk about 200 feet per day, on a good day. I am extremely weak, and need to get some strength. Whether this is a formal exercise program or not, I need to move to some degree. You might be right in that I should back off in terms of trying to actually strengthen myself as much as possible with weights, etc. However, I can’t even lift weights, or at least I don’t think so, because of the arm issues. The arm issues are limiting to the extent that until today I have been fed by others, and I have pain to the extent that it hurts even doing basic toileting tasks. If I back off, it means having somebody in the nursing home help me with toileting tasks. This is a road that I don’t want to go down. In terms of pushing through, I suppose the reason I framed things so forcefully as I did, was to present an extreme situation. I assumed that it was if it was OK to push through such tasks as I had mentioned, then it would be OK to push through lesser tasks. Going forward, I really don’t know that I have a choice, but to force myself to eat, and do other activities of self-care on my own, regardless of how painful they might be. I had a discussion with the nursing staff this morning, and told them this is what I would be doing. I can’t immediately go back on this. My inability to care for myself has been a contentious issue in recent weeks at the nursing home. I would agree, that curling 20 pounds is certainly not a priority at this point, but being able to feed myself and take a shower is. You are right and that I need to relax. my day to day existence here is extremely stressful. I find myself lying in bed, and having difficulty just watching the TV. I am in isolation, most of the time, and I’m trapped in my own head is my thoughts rollaround. I try to distract myself with positive thinking, meditation, etc., But the hours add up. The sooner I can get strong enough to sit up in a wheelchair for an appreciable length of time, the sooner I can interact with other residents. I look forward to going into the kitchen, break room, or outside, where other people gather. thank you.
    Last edited: Aug 11, 2023
  4. julzibobz

    julzibobz New Member

    @music321 I am sorry, what a difficult experience you are having. What I do want to advise, tentatively, is to aim lower. It sounds like you are in a really challenging situation which is causing a lot of stress and negative emotions. I think the first step is accepting it. Your brain and nervous system need respect before you improve. I think acceptance of that you are where you are first and foremost might create breathing room for your system.

    Once you have reduced the background stimulation of pressure, criticism and daily stressors you will have more space to build activity.

    I recommend also Miguel Batista's channel on youtube where he talks about this and the various elements to overstimulation. He also has some some recovery sheets which are cheap to buy which explain all this.

    Hope this helps.
    JanAtheCPA and TG957 like this.
  5. TG957

    TG957 Beloved Grand Eagle

    Your biggest enemy is anxiety over your desperate condition, which is totally understandable but will not get you anywhere. Here is what you should do instead of getting more anxious:
    1. Claire Weekes audios for anxiety, listen every day, multiple times: https://www.amazon.com/Hope-and-Help-for-Your-Nerves-audiobook/
    2. Kristen Neff on self-compassion, video:
    3. Kristen Neff on self-compassion audiobook: https://www.amazon.com/Self-Compassion-Kristin-Neff-audiobook
    4. Meditation, gradually increasing it to at least 1 hour every day. You can watch this video, I am explaining how to use meditation for TMS at about 23' into the video:
    Once you spend couple hours a day (with long rest in between) doing the above, you can start, very slowly, exercise, 5 minutes at a time, with very long breaks in between. I would not allow myself more than just walking around your bed as an exercise, few times a day - if I were you. Add 10% every week. Patience, patience, patience. Remember, this is the race in which a tortoise outruns a hare. Good luck!
    JanAtheCPA likes this.
  6. julzibobz

    julzibobz New Member

    I agree with @TG957 . Miguel also talks about duration of activity vs intensity and I think that also applies here. You want to do the same thing multiple days in a row with stable symptoms before adding a more stimulating activity on top (eg walking around). So sitting up for a few minutes every day, for a few days, is already a huge achievement given where you are starting from. I realise that might still be far from what you want, but I think this endurance mindset is really important. It also helps to journal about your rage of being limited if you need to get that out of your system first (or constantly!!). I don't know if you are able to write or keep notes on your phone but something helpful is to keep a victory journal over time so you can compare to where you were. E.g Saturday two weeks ago I sat up in bed, this Saturday I did that and shower and read my book, etc. Zooming in and zooming out helps a lot. I get it, I have long covid, I have had PEM, all of it f-ing sucks. I think if you can steady your baseline first though you can build a strong foundation to move forward from.

    We all have an Everest, and everyone's looks different, but from the sounds of it you have more than enough strength for the climb.

    Here is some of Miguel's stuff;
    https://www.facebook.com/cfsrecovery/about (Miguel Bautista, CFS Recovery)
    https://www.cfsrecovery.co/apply (this is for the online programme but you can check out the recovery wins at the bottom, maybe it motivates you)

    Another practitioner I like is Kim D'eramo, she has a great quiz and some meditations on no longer fighting your illness (do the quiz first):
    https://drkimd.com/ (MINDBODY MEDICINE)

    Or CFS health on instagram, he is quite accessible.
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  7. julzibobz

    julzibobz New Member

  8. Cactusflower

    Cactusflower Beloved Grand Eagle

    My tms coach recovered from CFS/ME (and other symptoms) after 13 years of being home bound.
    She lost her home, her job, her fiancé, and began recognizing that a traumatic event triggered it all.
    Before learning about TMS she began to meditate for long periods of time and that led her to become at peace with her symptoms.
    Eventually she found TMS work and healed. Here is her story.

    That link leads to her YouTube channel and she has a few interviews with others who healed from CFS.
    JanAtheCPA and TG957 like this.
  9. music321

    music321 Well known member

    I appreciate the replies that you have all have given me. Thank you very much. It’s clear that you all went above, and beyond, in terms of crafting your replies and providing me with links to various YouTube videos and other resources. I certainly appreciate that you took the time to help me with all this. I certainly agree that getting my nervous system to calm down is a priority. At some point soon, I’m hoping to get ketamine treatments, as I hope this will be a step in the right direction. Getting back to the physical, however, I know that a video was posted by Miguel Bautista, which outlines adding physical activity. I have not yet watched it, and won’t get to watch it for a little while, as somebody is currently helping me craft this reply and time is limited. As far as the arm issue I had referenced earlier, I’m not sure what to do. I was getting fed up, until yesterday. Yesterday, what I should’ve started doing was just trying to feed myself as much as possible. Instead, I actually vocalized to the nurses staff that I was going to be acquiescing to their demands and not requiring any further help from them. What this means is that if I were to regain the option of feeding myself, it would have caused me quite a bit of trouble in the nursing home. Essentially the philosophy of the nursing home staff is that, although I might be in pain, all I need to do is push through it. As far as my arm is concerned, I really don’t know what to think regarding it being an orthopedic problem versus a TMS problem. What I would like to do is to simply push through and continue with the ADLs, such as feeding myself, regardless of the pain and triggerpoints that form in my arm. If I know that this is essentially harmless, I think my arm will rise to the occasion, stop hurting, and get marginally stronger over the next couple weeks to the point where it doesn’t bother me. Do you think this is a reasonable course of action, or is a potentially disastrous? I spoke with a pain center out in California, in Malibu, possibly run by Alan Gordon, though I can’t remember. The coaches there had suggested that I treat any and all pain as TMS. However, another practitioner I saw, a former colleague of Dr. Sarno, said that he did not feel comfortable commenting on whether a particular area of pain was TMS or not. I don’t know if he mentioned this simply because he felt that it wasn’t possible to differentiate TMS pain from orthopedic pain, or if he was just protecting himself, legally. Please don’t misunderstand me. I hear you all loud and clear regarding the nervous system and keeping myself calm, I will certainly check out the video on introducing physical activity. However, as far as this activity of feeding myself, it’s something that I would really like to continue. Please let me know your thoughts. Thanks.
  10. theacrobat

    theacrobat Peer Supporter

    The sort of battle against pain you are talking about is possible to achieve, but I wouldn't recommend it in your current condition. I would suggest getting to the root emotional cause underlying symptoms before attempting exercise. If you hit the bullseye emotionally, the fear and pain will diminish to the point that relatively little willpower will be needed when you start exercising. As a shortcut to find out what the root cause is, generally it is anger or grief relating to something that happened years ago, whose true significance has been overlooked or downplayed consciously (emotional/physical/sexual abuse or grief from a bereavement are two common ones). I had chronic fatigue in addition to a whole load of other stuff and yes, simply battling on and doing whatever the fatigue was stopping me from doing was a big part of it, but only once I'd released enough emotions that the fatigue was small enough to confront head on via exercise, and even then I did everything very gradually. Meditation etc can be very helpful for some people, but nobody got sick from lack of meditation, I think it should be seen as an adjunct to addressing the root emotional cause the pain/fatigue is trying to distract from. If you're struggling to find the root cause, journal or talk about all your life events systematically, see what the physical effect is, and via trial and error you'll struggle to miss it.

    All pain is neural, without sensory nerves there cannot be any pain (or pleasure), and the nervous system is connected to the brain, the seat of the mind.
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  11. music321

    music321 Well known member

    thank you for your response
  12. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    I stopped reading here.

    Sorry, @music321, I get that you are suffering, and I'm very sorry for you, but you asked for help in a forum which is specifically designed to discuss emotional healing from mindbody conditions. Have you read anything in these excellent responses to indicate that anyone here is going to offer you specific physical advice? Your attempt to continue writing about the physical is not going to get you different answers. That's not what we do here!

    Please know that this is not you - this behavior is your TMS brain. The time you spend on these lengthy descriptions makes you feel like you are accomplishing something, but this is a trick by your TMS brain to keep you stuck and focused on the physical and on your fear. In reality, it's accomplishing nothing.

    I skimmed your lengthy post just enough to see, as @TG957 already pointed out, that it didn't contain anything about working on your emotional mental health. To be brutally honest, I don't ever spend my valuable time reading lengthy descriptions about physical details, because they are irrelevant to doing the real emotional work.

    Have you ever engaged in psychotherapy? And have you heard about ACEs? When I see this kind of suffering from known mindbody conditions, I immediately think about childhood adversity. You can easily and quickly answer the ten ACEs questions at the following link, but you must also read the short accompanying article.

    I wish you luck.
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