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A desperate update, opinions appreciated

Discussion in 'General Discussion Subforum' started by Duende, Apr 8, 2019.

  1. balto

    balto Beloved Grand Eagle

    RogueWave, are you happen to know ACE1 from tmshelp forum?
  2. RogueWave

    RogueWave Well known member

    I never met him personally, but his writings, especially his 'keys to healing' were also a great help to me at my worst. His take on TMS also helped change

    @westb Yes, I completely agree with you. But just keep in mind the body chemistry influences the thoughts. Stress hormones make the brain hypervigilant, and will push it to think of the worst case scenario. As I mentioned before, several thousand years ago, thinking this way in response to a potential threat would probably have saved your life. So just keep shifting the thoughts when you catch yourself. As your body starts to relax, so will your thoughts! It's quite fascinating to observe, and simple to understand. But in practice it's often much more tedious to do.

    So dig your feet in, and keep working. Read things to keep you motivated, and confident about the benign nature of TMS when you need to, but most importantly, go live your life as fearlessly as possible! Demonstrate to your brain that nothing is wrong, and eventually it will fall into line. I remember when my back pain was almost cleared, and I had a few small flare ups here and there....I'd just go to the gym and do all the stuff people with back pain aren't supposed to do, like squat, deadlift, etc. It always made me feel better, and once the conditioning was broken, and the fear was gone, I was free.

    I believe TMS to be a predominantly 20/21st century issue. This is simply because life moved much slower prior to our modern age, and the stress response for most people was triggered far less often than it is now. Add to that Dr. Sarno's observation about medical imaging (in which pain is blamed on structural 'problems' in almost 100% of the cases, because we can see them with modern imaging technology), and all the instructions to 'baby' oneself, and the recipe for a chronic pain epidemic is complete.

    I'll share an interesting case here, from a few years ago. I had a young female patient in her mid 20s come into my office with a chief complaint of severe IBS-D (for those that don't know, the D refers to diarrhea). She was barely leaving her house at the time, because when the urge hit her, she evacuated her bowels almost immediately. She had had every test under the sun multiple times (all negative), and had tried just about everything. Upon taking her history, it became very clear to me that she was in a very severe TMS state. She grew up in a very dysfunctional family, and was still dealing with repercussions of that on a daily basis. She was very intelligent, and highly analytical, and would simply not listen to what I was telling her, no matter how I explained it.

    She left my office in quite a huff, telling me 'I'm paying you to fix me!!' I stayed in touch with her from time to time, just to check on her progress. She suffered for roughly another year, spending all of her spare time trying to fix the issue, and getting nowhere. Eventually another doc prescribed some black-box med (the name escapes me, and honestly I had never even heard of it), which had the rare side effect of sudden death. She told me she was desperate, and just decided to try it. Apparently it helped a little, but didn't fix anything. I personally believe the little benefit she did receive was a placebo effect, but that's another story.

    Awhile later, tragedy struck the family. Her brother, whom she was very close to, got out of jail after about 2 years in for drug trafficking, and in his first weekend home he OD'd. She found him dead on his bedroom floor. Needless to say she went into a severe state of grief and depression that lasted for quite some time. We re-connected after awhile when I called to check in on her, and she shared with me that she had recently realized that after finding her brother, all of her IBS symptoms disappeared immediately.

    Fascinating, but it helps prove the 'persistent tension' idea. Her focus was taken off her symptoms completely, and instead her brain and body experienced intense grief and depression. I'm obviously not saying it's healthy to be in that state either, but when that happened her body stopped producing the constant stream of stress hormones that was keeping her IBS symptoms so severe. The change of thought/focus changed her body chemistry immediately, and her IBS disappeared. That was several years ago, and her symptoms have never returned.
    TrustIt, HattieNC, westb and 2 others like this.
  3. Sofa

    Sofa Well known member

    Hello Duande.
    You do seem like the perfect TMS candidate, and let me say I base this only on my observation that you are VERY in tune with your body, feelings, emotion. To the point where you are self conscious. I don't say that in a bad way. It's like a higher level of consciousness that tends to be.... Enlightening yet destructive emotionally at the same time. I'm there with you actually...
    This is just my take after reading your well written first post.
    One quick tip thats not a perfect cure, but a nice fresh air walk and relaxing novel will help. At least it does for me!
    Duende likes this.
  4. JulieMTherapy

    JulieMTherapy Peer Supporter

    Your story is similar to mine!! I was convinced I had ALS or MS. I had so many somatic symptoms I couldn't stand it!! It was horrible.

    There's nothing wrong with you! You're ok. It sounds like you're being so hard on yourself. What helps me when I have new symptoms is to try to understand them--not just push them away. What is your body communicating with you about how you feel? Are you angry, sad, helpless, burdened, doubtful?
  5. Duende

    Duende Peer Supporter

    Hello everyone, and thanks for your latest answers Sofa and Julie.

    New symptoms have appeared since my previous message, now I am hyper-salivating almost all day, and I am tired in general, in addition, the hand that felt numb or in tension (not pain) is as if it trembled inside (not visible) . When I hurry or act quickly, my whole body trembles, my movements are not fluid. And the worst: I have not seen anyone here have similar symptoms!

    I still think about Parkinson's, because I've read that these symptoms may be due to that. I've read so much about Parkinson's that everything seems to indicate that, even personality traits. I'm so scared that I do not listen to anyone anymore, I have a distrustful behavior, especially with some of my closest relatives, I'm always very sad and serious. I am aware of my behavior, but it is as if I could not behave or think otherwise.

    Tomorrow I have an appointment with a well-known neurologist who saw me 10 months ago, I am afraid and I am nervous, but I imagine the conversation: he will tell me that he can not diagnose anything and order medication for anxiety. The previous appointment was like that. Then I stay quiet for a few hours or a day, but as the symptoms continue, again the same.

    These days I've told myself that if tomorrow the neurologist tells me there's nothing wrong, I'll stick with that and change my direction in this whole story. I do not know how to do this: trust the doctor and continue my life.

    But, above all, the worst thing is not that I can not do this or that, because I can empower, I'm not totally invalidated ... the worst is the fear and concern for what is happening. I think a lot about suicide. Right now, for me it is an obstacle to be a mother, but I would not have many doubts. I have always been a "black and white" person: if I can not live well, I prefer not to live, I do not want a half life.

    I have started to see a psychiatrist too, but I do not have much expectation of it, I think he will try some techniques first, and if he sees that I do not respond to these techniques, he will try to convince me to take medication and otherwise it is not possible to get out of this mess. I am someone intractable...

    I know it is fear that keeps all this, that when you are not afraid, things change radically. But I do not know how not to be afraid when all this happens to me, every day and throughout the day. I do not know what or what to trust, because I do not trust anyone, not doctors or medicines, or anything!

    I have a really really big problem.
    Last edited: May 15, 2019
  6. RogueWave

    RogueWave Well known member

    Yes, you do. But mainly because you aren’t doing any of the things already mentioned multiple times in this thread.
    I will apologize now, because I am going to be very direct here. The way you have been handling this leaves no other options. It’s kind of like one of those movie scenes where something bad happens, someone gets hysterical, and it takes another person to give them a quick slap in the face to snap them out of it.
    So this will be the ‘slap.’
    First, go read this list completely:
    https://www.anxietycentre.com/anxiety-symptoms.shtml?gclid=EAIaIQobChMIu7bvgOig4gIVgfhkCh18dAadEAAYASABEgIqsPD_BwE#symptomslist (Anxiety Disorders: Symptoms, Descriptions, Causes, How To Stop Them)

    That is the most comprehensive list of anxiety symptoms I have ever found. Notice how many of them you have. This is essential to understanding and accepting this as your diagnosis, which is in turn essential to fixing it.

    Then go back and re-read this thread, and Hillbilly’s story that I posted. Don’t just read it to read it, read it to absorb it.

    If you can’t accept this as your only diagnosis, and you continue to think ‘maybe it’s Parkinson’s, MS, etc’ you will be stuck, and the cycle will continue.
    You must decide once and for all to accept the diagnosis for what it is, and do the work required to fix it. It’s tedious, you’ll still have some bad days, but eventually you’ll get there if you just keep going.
    Last edited: May 16, 2019
    TrustIt, Gusto, Duende and 3 others like this.
  7. 3rdCoast

    3rdCoast Peer Supporter

    @RogueWave Thank you for your posts on this thread. I find them extremely valuable. It should be noted that it's the sympathetic nervous system stuck in hyperarousal (SNS: fight-or-flight response), not the parasympathetic (PNS: restores calm, homeostasis). The SNS stuck in hyperarousal idea is new to me, and it rings true. The idea that the symptom itself (pain, fear of pain, worry about never getting out of pain, etc.) becomes the fuel that keeps the SNS hyperarousal wheel turning makes sense too. Great post, thanks again.
  8. RogueWave

    RogueWave Well known member

    Thanks for reading them!

    Yes, but the effects of sympathetic arousal are mediated through the PNS. Chronic SNS arousal has a ‘spill-over’ effect into the PNS, which ultimately creates TMS symptoms.

    The problem lies in the SNS, but the actual symptoms we experience are in the PNS. I hope this makes sense.
  9. 3rdCoast

    3rdCoast Peer Supporter

    Apologize for the incorrect correction on that. I was thinking if the PNS was overly activated, a person would experience more peace and calm, not symptoms. Are you saying that chronic SNS arousal sort of smothers out normal PNS activity?
  10. RogueWave

    RogueWave Well known member

    Yes, exactly! I like your wording even better.
  11. Duende

    Duende Peer Supporter

    Roguewave, first, thanks for your slap :) Of course, I understand the meaning. My mother tells me the same thing! According to her when a person is drowning in water due to his lack of calm, it is best to slap him in the face and then help him out. She is a bit gross woman who grew up and lived on the edge of the sea in a fishermen family, so she will know what she says!

    The visit with the neurologist yesterday was totally satisfactory, he explored me taking his time and said that he saw me very well in all aspects, and that the normal and healthy body does strange things at times, but that my things do not fit with any disease, and that I have been sick for a long time, 3 or 4 years, and that if there was something wrong, it would probably have already been detected, he said that the diseases do not hide, that they show their face quite clearly. I was calm and I believed him, he is a recognized expert in his area.

    The list of symptoms of Anxietycentre is very valuable and enlightening. Now, it is as if I find myself in the next problem: that is, I already know that all these messages from my body are due to anxiety, but now I want to finish it because if I do not do anything I can be suffering for decades like some people. Ufff!

    I also think that the withdrawal of the antidepressant and the benzodiazepine that I took for 1 year until the summer of 2017 has aggravated things a lot. I hope to recover from that, but it is not a help, because I have read stories of people who say they have not returned to be the same person since they took medications of this kind... Brrrr! I try not to think much about this, but I really regret having listened to my doctor when he gave me these medications, because I think they have been disastrous for me, I was fine the year I took them, but removing them is being an odyssey that has not improved much still.

    Yes!! I read Hillbilly and Balto every night before sleep, his writings so simple and so wise. I'm grateful that they took the trouble to write their ideas. I am also grateful to you, because what you tell me is worth a lot because besides being generous, you are a medical professional. I understand it so well, and now I need to internalize it and feel it, to do "click" deep inside me. So, I accept the diagnosis intellectually, but I have to come to feel it. Over time, I hope I will. I guess a lot of people fight with that same obstacle.

    A week ago I started a brain retraining program to help myself changing thoughts and associations, visualize, etc. I find it strange to practice, but I will continue daily, as much as I can. I do a bit of Qigong along with that, and I do my normal life (although I suffer a lot internally). I congratulate myself simply for practicing and I have tried to focus on the positive (since I started a week ago, I'm not so constipated and I sleep a little more, it's almost imperceptible, but it's something!). I do not dare to declare my progress because I think that as soon as I say it, it will get worse again and that it was only a mirage or an illusion... Duende's stupid brain :muted:

    I have no other path to stick with the work, like in a dark tunnel, without knowing where the light is, but I must keep walking.

    Thank you all, again, for your support.
    HattieNC and westb like this.
  12. RogueWave

    RogueWave Well known member

    Congratulations! I have personally had many wise mentors at different points in my life, so I'll share a few more things they taught me:

    Believe it or not, I've studied a traditional Chinese Qigong for quite some time. My teacher often used to tell us 'quantitative change occurs before qualitative change.' When applying this to healing TMS and its offshoots, just think of it like little weights being added to a see-saw. Every time you make a positive change, whether it be a change of thought, habit, etc, it's like adding a little weight to the end of a see-saw. The other end of the see-saw is weighed down from previous habits and life experience, so patience is required to add enough weight to the other end to get it to finally change. That same teacher was also fond of saying 'by the time a physical change occurs, deeper changes have already taken place a long time beforehand.' This is where having some faith in the process comes in. Keep doing what you are doing, and even if you don't feel great, always see yourself (and think of yourself) as getting a little better every day. All of these things help the body to stop the constant over-production of stress hormones. And once that happens, it's just a matter of time before the body regulates and heals.

    Another mentor of mine was a brilliant older Taiwanese doctor. He was fond of saying (in English it's not as eloquent): 'The hardest part of moving a boulder from one point to another is to get it rolling.' This idea can be applied to many things, but in terms of healing TMS, I like to tell patients that initially it's going to require more work to get the body and brain out of the state that it's currently in, but once it starts healing, you don't have to be as aggressive with treating it. I only say this because sometimes the whole process can seem overwhelming to people who have been suffering for so long.

    So keep going, and if a technique you are using is working, just keep going with it. If it's not working, find something else. There are many, many tools to help fix this problem. You just have to be consistent and find what works for you. And it seems like you are already on your way, so congrats again!

    One more thing I should add. Anti-anxiety meds tend to displace a neurotransmitter called GABA. And anti-depressants usually cause issues with serotonin. If you were on those drugs for more than a few months, I'd highly recommend supplementing both GABA and L-Tryptophan (it's a serotonin precursor). They will help your body chemistry rebalance far quicker, and should easy withdrawal symptoms. However, if you are still taking either of the drugs you mentioned, DO NOT take the supplements. Only take them if you are off the meds completely.
    zclesa and Ruby_ like this.
  13. Ruby_

    Ruby_ New Member

    Hey Duende,

    I just wanted to tell you, that Im so Feeling you really.. Our stories are very very similar, if you want you can read mine in the General discussion section.
    And Im struggeling with the same, RogueWave already knows.. )) as he is helping me alot currently, I also have this Problem of: how to stop this inner belive of something is wrong with me.

    I guess we digged ourself already so Deep into this believe that our brain really think there is something About to happen with us and therefore it creates this all weird Symptoms which scare the heck out of us. :/
    Anyways hope you are doing well! And again thank you to RogueWave, you are awesome!
  14. Duende

    Duende Peer Supporter

    Ruby, thanks. I read your story and it caught my attention.

    I would like to know if you think your symptoms could be due to the use of medications.

    I am very confused in this sense: I constantly debate between two interpretations of my problem, on the one hand it is TMS and my fear, on the other hand it is all a nervous system suffering the toxic impact of the medicines. I do not know what the hell to believe anymore. very confused and tired of this nightmare that completely hijacks my life. Also every internet community has its story to which everything attributes: ... I'm so bored of all this ...

    What medications did you take, Ruby?
  15. Ruby_

    Ruby_ New Member

    Hey Duende,

    Im definetly dont have this all because of medication because before this all started and during after this like 3 years I didnt took medication. Just now 5 days ago my doc prescribed me „Opipramol 100mg“ 1 pill each evening too calm my thoughts down. I take it every evening before sleep and it makes me really tired and sometimes nauseous but thats it, he said it will take 2 weekes till I feel a better mood.. so Ill see.

    I think also your case isnt due to medication but thats just my opinions and Im not a doc.. I believe that we create our suffering on our owns. because it cant be that at one point we were normal and then after a lot stress - panic attack or illness or other bad experiences we turned to wrecks.. I think that doesnt make sense.
    Duende likes this.
  16. Duende

    Duende Peer Supporter

    Is this common? Symptoms on one side of the body? Many here and in Anxietycentre refer to symptoms similar to mine, but not on one side of the body only ... I am very confused.

    I feel very shaky especially when I move, for example when getting out of bed if I do things too quickly. Then I feel especially trembling. Does this have something to do with adrenaline, perhaps? It would be great if RogueWave gave his medical point of view.

    A good thing I want to mention, is that constipation is gone, since 1 month, I'm like a clock in that matter. Never before. Thats funny. But the other symptoms continue the same or worse, and depression and anxiety is overwhelming.
  17. RogueWave

    RogueWave Well known member

    First, it’s very common when dealing with this to look for people that have EXACTLY the same symptoms as you. Ishould know, I did it myself for months in the beginning, and it only slowed my recovery.

    But it’s really just part of the anxiety. An overstimulated brain becomes hyper vigilant, and a consequence of that is thinking like ‘well, this sounds kind of like me, but it’s not exactly me, so I must be different! It must be something else!’

    Sound familiar?

    This is why acceptance of the TMS diagnosis is the first step to getting better. If you continue to self-diagnose, your body will stay stuck in a stress loop, and your symptoms will continue.

    Dr Abraham Low, who I mentioned before, was the founder of CBT. If you want an actual program to follow, use this link:
    http://www.breakingdepression.com/tag/dr-abraham-low/ (Dr. Abraham Low – Breaking Depression)

    Dr Low identified several ways patients sabotaged their own healing. Self-diagnosis is the biggest one, but these are also very common.

    1. Romantic thinking. In other words, over-dramatizing symptoms. Your last sentence about things being ‘overwhelming’ is an example of just that. I know you are suffering, but thinking and speaking in that way will convince your brain the problem is far worse, and your brain will react by feeding the stress cycle.

    2. Intellectualism, or over-analyzing symptoms. Your opening statement is a perfect example. The more you focus on the details and all the ‘But I have...!’, the more stress you will produce. Forget the details, look at the bigger picture! And then please create a new picture :)

    3. Defeatism. This is a big one. Thoughts and words like ‘this is never going away’, ‘I can’t live like this’ etc. All massive stressors. Guard against them, and when you catch yourself doing it, change the dialogue into something like ‘it’s just my nerves blowing off steam, every day I’m getting better! Lie to yourself if you have to, for now.

    But you are getting better. That change in digestion is fantastic!! It’s just showing you your healing process has begun. So keep going!

    I’ve been discussing sabotage recently. I’m going to finish this post by re-posting a response I just gave regarding over-analyzing and over-dramatizing symptoms:

    ‘If you want to be healed, that has to stop, now. All of it. Yes, it’s awful, hellish, you can’t keep going like this, etc. The anxiety symptoms influence the brain, and the brain influences the body, keeping it trapped in a full blown stress response.

    Stop the cycle!!! I’ve given you plenty of suggestions, and there plenty more in Hillbilly’s writings. Ace1 is also a doctor, and here are his keys to healing:

    http://www.tmswiki.org/forum/threads/condensed-version-repeating-the-keys-to-healing-by-ace1.17783/ (Condensed version "Repeating the keys to healing" by Ace1)

    Keep reading too, because knowledge will give you confidence eventually. And go live!! I’ve as if nothing is really wrong, because at the core of it, nothing is.

    Don’t wait to feel better to go do things, and stop focusing on yourself so much!

    You have to develop more of a ‘fuck it!’ attitude. Like ‘well, I’m just going to have these symptoms right now...fuck it! I’m going out anyways!’ Sitting around and focusing on them will just make them worse.

    And finally, one more quote from Hillbilly that is appropriate now:

    “There is one common thread among those who've beaten this condition, and it isn't reading someone's book. It is this: They stopped reacting emotionally at all to their symptoms . That is the cause of your continued suffering. It is the current flow of emotional toxins that flow through your body that cause you to feel bad, and I'll repeat it for you if it will help. If you doubt this, go to the success stories part of the forum and read through them, then weed out the ones who've come back with a relapse and some other symptom. The symptom is stress-related and so is the reaction, which is the cycle. Stop the cycle today. No more emotional reactions, no more worry about why you still have symptoms. No more doubt and bewilderment about what is happening.

    In my opinion, it is best for people in recovery to not read forums of any type after they have reached a point of acceptance that they suffer from a benign process of their nervous system that should be ignored as a barrier to living their daily lives as fully as possible. The reason(s) why are numerous, but you certainly are experiencing the most important, which is that you are highly susceptible to negative influences in your thinking at present, and any strongly worded complaint or description of someone else's can and often does become a reality in your own life.

    This you can experience for a lifetime if not put out of your mind and the activities of life taken back up. All crutches, including reassurance, must be removed and the person relearn to trust him/herself and become your own source of strength going forward, not just while you recover, but for the rest of your life.”
    TrustIt, tgirl, HattieNC and 2 others like this.
  18. Duende

    Duende Peer Supporter

    Many many thanks, friend. I see clearly that my hardest obstacle lies in the little faith and confidence that I have in myself. Thank you, I do not know what else to say :shy:
    RogueWave likes this.
  19. RogueWave

    RogueWave Well known member

    Then I look forward to hearing your success story in the future! :)

    You are stronger than you think, and feelings are not facts. Don’t forget that, ever.

    Also, while controversial, please listen to the first section on stress and how it affects thoughts and health, it will help clarify things.

    Gusto likes this.
  20. Duende

    Duende Peer Supporter

    Terrified and with symptoms. That's how I am.

    I went to my doctor because he ordered some blood tests, and today I had to see results, except vitamin D, everything is fine. He has explored me and asked me, and he knows my story from the beginning. And I will be referred to a neurologist. Now he says that it could be Parkinson's. Imagine how I am. I can not sleep, I feel trembling in any movement in my whole body, and when I'm still I feel my arms, trunk, head throbing strongly. My head is misty and heavy, my neck thight, and my left arm and hand and foot and leg feel numb, heavy and clumsy. I feel heavy, slow and out of balance.

    To top it off, I found a couple of scientific studies that raise the possibility that sertraline, the ssri I took, can induce parkinsons.

    I am making myself miserable.

    So far I am not religious, but I have been listening to several testimonies of people healed because they put their lives in the hands of God.

    Really, I am confused. I dont understand whats going on.
    Last edited: Jun 27, 2019

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