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I think I'm developing CRPS

Discussion in 'Support Subforum' started by rand, Mar 29, 2023.

  1. rand

    rand Peer Supporter

    My last post about my ongoing struggles with erythromelalgia was back in Oct. Since then I've begun working with Dr. Stracks, Dr. Schubiner, and psychotherapy with Dr. Eric Sherman. While I think I've made some progress regarding fear of symptoms (I've started hiking in the heat again), I haven't seen any improvement in the symptoms themselves.

    I have been "fortunate" in that my EM has been mostly painless - uncomfortable and unsightly, but painless. In the last few months however I've developed an achy nerve pain in my right foot only, seemingly separate from the EM. It began back in Oct with pronounced sensitivity to warm water on the toes of my right foot. Then an achy freezeburning in those toes when cold or at ambient room temperature. I had to stop laying on my right side because my right foot pressing against the mattress became so painful, and I had to start elevating my foot when sleeping or sitting at work. Still I shrugged it off and did my best to ignore it, dismissing it as more TMS shenanigans that will soon pass. But in the past couple of weeks the aching pain and sensitivity has ratcheted up and its no longer possible to ignore, it feels like its emanating deep in the center of my foot, and radiates up my leg, and its more or less constant. In warm showers it feels like my foot is going to explode. It feels better when I am walking or active, and worse when standing, sitting or sleeping. Also if I roll my ankle I can feel nerves jolting up to my big toe. I'm worried this is CRPS, or some SFN complication from the EM. Its very discouraging after all I've been through and all the hard work I've done with the EM. It seems like the symptoms just keep accumulating or worsening, and nothing ever improves.

    I'm not really sure what I'm looking for in posting this here, I know I've pretty much already received all the advice I can get. I don't have any family or friends to talk to, so this is it.
  2. mbo

    mbo Well known member

  3. Cactusflower

    Cactusflower Beloved Grand Eagle

    A few things: you are absolutely in the right place to talk about these things. It is suggested by most TMS specialists to minimize discussions of TMS symptoms of any kind with family or friends.
    You are working with three of the top tms specialists in the world, however your post is still only about the symptoms. You never once mentioned how you feel about these new symptoms. How do they make you feel?
    I also read a duality in what you’ve written - you think new symptoms are “seperate” but still tms. Where is the desperation? You have mentioned treating new symptoms like tms but at the same time, you mention treating it as though it is physical by feeling you must sleep a certain way, and that you are constantly evaluating it walking, sitting etc. I know how this is, absolutely I know about being stuck in that cycle but can you step back and see the cycle of paying attention to it and tms -the pain/fear cycle? You are in high alert, in fight/flight.
    You mention “working” with these Doctors. Do you meet with anyone regularly? Have you talked any one tms course from start to finish that either of the two tms Dr’s offer or participate in one of their groups?
    I have had to refresh myself on tms principal’s a few times, as I see myself get stuck in some cycles. It might be as simple as re-reading some Sarno and often Tamara’s book (the link in the above post will give you info on that).

    Re-assure yourself that you already have what you need! You are absolutely fine, you are not broken or ill. CRPS is merely a label of symptoms. Remember that fear is a state or a feeling (anxiety) that often appears to keep us from feeling anger or sorrow and that tms work needs to be lead with the heart.
    JanAtheCPA likes this.
  4. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

  5. Cactusflower

    Cactusflower Beloved Grand Eagle

    As I was just moving around, it also occurred to me that like you, my own symptoms are sometimes better when I’m moving, when the brain is very active. What do you do to slow down and rest?
  6. rand

    rand Peer Supporter

    Thankyou cactusflower. I have read Tamara's book and worked with Rita, last summer (before the foot pain started). I also re-read Sarno every day for a month straight back in January, and listened to Healing Back Pain audiobook on repeat at work. I worked through Schubiner's workbook as well. I meet with Dr. Stracks once a month and Dr. Sherman weekly. I stay in touch with Dr. Schubiner via email. I no longer read TMS literature or participate in guided programs as I believe that has become counterproductive for me; I'm intimately familiar with the theory in any event.

    I'm gonna say something that will probably anger some people here, but at this point I'm beginning to believe there is a permanent form of TMS, resistant to any intervention. I say this after spending time on this forum and seeing enough people struggling, often getting worse, after giving it their all. I don't mean to merely cast negativity or discourage others - in fact it seems Sarno's approach works for the majority of people. But if there are indeed resistant fringe cases, which Sarno even acknowledges, I think its important to at least have a discussion about it. I see this as a problem that needs to be confronted and worked out, maybe even some day solved, not swept under the rug.

    When I first read Mindbody Prescription back in March 2021 in hopes of healing my chronic neck pain, I had no reason to believe it would work for me. I was impressed by Sarno's no-nonsense scientific approach, but I was skeptical of course. My skepticism however did not have any time to develop further, for I almost immediately began noticing results. Within a week I saw dramatic reduction in pain, and I knew it was going to work. Looking back on this its clear to me Sarno's "black box" in the unconscious that controls the symptoms, for whatever reason, decided to cooperate and turn the symptoms off. I believe the mistake I made was in thinking that I had any control over this black box. Furthermore I now understand that doubt is fueled by the lack of results, and not necessarily the other way around. When you throw yourself whole heartedly into the process for years only to see symptoms worsen, and new symptoms accumulate, doubt fills the vacuum left by the lack of results. You begin to feel like something is missing from the theory. I am not impressed by the arguments that say others have healed just fine therefore the theory is sound; look closely - that is not an argument.

    When I first began working with Dr. Sherman I asked him if he could help me with doubt, and he said something very insightful. He said its not his place to convince anyone that the TMS approach will work for them, but that the only way to dispel doubt is to see results. Either way, I no longer believe doubt alone prevents healing - doubt is universal at the beginning, but most people see results regardless. So doesn't that suggest doubt isn't the culprit?

    I do not know why my current symptoms have defied all treatment and mindbody work, but I no longer find it productive to blame myself, nor will I allow others to do so. I can honestly say I have tried my very best, and it simply wasn't enough.
    Last edited: Mar 30, 2023
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  7. Cactusflower

    Cactusflower Beloved Grand Eagle

    I think some people are “resistant” only because there is one (or some) elements they aren’t able to work through YET.
    You can’t force things. Your brain may need time.
    Asking for 100% healing (I know that is not you), is asking too much too - our brains fall back in the old familiar, it happens. But we also can not expect to heal ( or will do it very slowly) if we can not get our minds away from the physical. Miffybunny’s and @TG957 ’s stories are examples of this.
    I think you are spot on breaking away from a lot of ongoing tms work. Sometimes we know it by head, have worked through the mechanics but the heart work is harder. The self-kindness, slowing down, finding your peace in this world and your life, finding the love you have for this life. It sounds hokey, but that is the focus of the Love Heals movie. The subject of the film still has some pain at the end of the film but her life improved immeasurably. By believing you won’t or can’t heal, you will not. That isn’t just doubt. It goes far beyond that, to your core beliefs about yourself.
    There have been several posts by people who say they believe some people won’t heal. I think this is just a trend to resistance. Pretty much all those folks are folks who tried various programs and every single post avoids discussion of the emotional work or how they feel about this “not working”.
    Doubt and faith.
    Last edited: Mar 29, 2023
    miffybunny likes this.
  8. TG957

    TG957 Beloved Grand Eagle

    @rand , I am so sorry that it is not going well for you. Before you give up, there are couple observations that may help you get unstuck:

    1. From what I can see, you only started your TMS process about 9 months ago, reading Mindbody Prescription 2 years ago did not make big enough dent on your doubts. 5 months after discovering Dr. Sarno, I had most of my symptoms almost as bad as 5 months prior, plus new ones, like fibromyalgia. What you are seeing as dead end, in fact can be extinction bursts. Night is always the darkest before dawn.
    2. In just 9 months, you have packed in what others do in a year or two. Trying very hard may not always be a good thing. Relaxing over it, and not ignoring but rather accepting the pain might get you moving forward. It takes what it takes. It took me 2 years, and it was even longer for Rita, who had a book cure at first, but only for a short time. Slow and without inner pressure works much better.
    3. You seem to be worried a lot about your doubts, which makes me suspect that you never really got over those. It took me a year to get over my doubts, and only then I started healing.
    4. Besides reading the books and going to the doctors, how much of deep emotional work have you done? Have you done any somatic emotional processing? If not - you may be just scratching the surface. Dealing with emotions is a very painful, but necessary step. Book cure only works for the lucky few.
    5. I can also see some self-blame in your posts. Blaming yourself for not healing quickly enough can kill any progress. Check out Kristin Neff's book on self-compassion.
    6. Not to be vain, but I do think that reading out loud and slowly chapters 5 and 6 from my book, one section per day, may help you. I go in details over all the points I am briefly making above, and more.
    7. Meditation, meditation, meditation. Seriously, deeply and with full emotional engagement.

    Do not give up, and best of luck!
    Ellen, westb and miffybunny like this.
  9. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    In addition to these key elements, I'd like to say, as I have said before, that a focus on 100% belief, also known as 0% doubt, is just a distraction. That's distraction, Sarno-style. The very basis of Dr. Sarno's theories: the thing that is used by the TMS brain mechanism to distract us from emotional issues that our brains think must be repressed.

    Unfortunately, these 0%/100% amounts are sometimes promulgated as essential by well-meaning people (I do not include TG, who did not say anything about 0% and who I'm sure would never do so) who don't understand that individuals who are obsessive and/or whose brains are extremely resistant, will unconsciously take these numerical values very literally, and use them as an excuse for not progressing, at the same time that their TMS brains are unconsciously using this as a distraction for repression.

    Based on my own experience, I suspect there's no such thing as 100% belief, as I recognize doubt in myself all the time, apparently co-existing quite happily with my very high belief in the power of the TMS mechanism. And I think that this is very common no matter how much success someone has achieved in their past - every new symptom brings an element of doubt - because that's what the TMS mechanism is designed to do, and it will continue to do so throughout our lives. Our ability to squash it becomes quicker and easier with time and skill.

    I have said before on the forum that it's actually not necessary to have 0% doubt or 100% belief in order to do the work. Doing the work provides the belief.

    I also don't believe that there are people who can never heal. But I do believe, having initially learned this from Dr. Sarno's teachings, that some people need skilled therapeutic intervention because their TMS symptoms are the result of trauma, and that self-help ain't gonna do it. A couple of posts about this that I made on another thread in response to someone who asked about TMS recovery failure:
    Day1 - knee and leg pain, thigh pain, weak arm
    same thread: Day1 - knee and leg pain, thigh pain, weak arm

    You might also consider how victimhood is playing a role. For example, this seems like an unsubstantiated assumption:
    The lack of substantiation is irrelevant - the really concerning thing for your emotional state is that this appears to be self-sabotage - a preconceived notion that whatever you have to say will be viewed as invalid and will provoke a negative response against you. Your negative brain set you up to be a victim in advance! My reaction is sadness in addition to concern.

    While 100% belief is not necessary in order to recover, I believe the following 100%: that victimhood must be replaced with self-regard, self-love, and self-compassion before recovery can be achieved.

    Ellen, miffybunny and TG957 like this.
  10. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    PS, it's possible that the last thing you want is another success story, but this one was just posted today. It's immensely readable (the poster tells us that he's a writer), AND, most importantly, the poster clearly tells us what it took:
    Recovery from possible severe autoimmune disease | TMS Forum (The Mindbody Syndrome) (tmswiki.org)
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  11. Sita

    Sita Well known member

    I agree. Dr. Sarno mentiones that a very small percent will not get better. We never talk about it here. The blame is put on the person. I empathize with you.
  12. miffybunny

    miffybunny Beloved Grand Eagle

    Hi @rand,

    I'm sorry to hear you are still struggling. If you recall, you private messaged me several times and we were set to speak twice. The first time you said you were doing better, and the second time you canceled at the last minute. I don't have any records of sessions with you either. Any kind of coaching or therapy or solo work is a process. That requires a commitment to implementing the work and not vacillating between practitioners and within your own mind. You have consulted with three titans in the mind body field (so I'm in good company!) but it sounds like doubt is still reigning supreme. As I conveyed in our private messages, until doubt is dealt with, you will stay stuck and tricked into thinking that you can't get better. You can do all the emotional archaeology in the world but you will not "see" the results you are looking for in the body until you dispel the doubt and the fear that it generates. There are only 2 types of people when it comes to "healing"...the willing and the unwilling. The choice is yours.
    Last edited: Mar 30, 2023
    TG957 likes this.
  13. rand

    rand Peer Supporter

    @miffybunny You are mistaken, we spoke on 4 occasions in September, an initial consultation and then 3 1 hr appointments, our final appointment you suggested I schedule with Dr. Schubiner, which I did. You can message me privately if none of this rings a bell and I will show you my records - I don't see the need to have that conversation publicly. I would also dispute your assertion that I am vacillating between practitioners. Stracks and Schubiner are at the same practice now and saw no conflict in my speaking with both - And I got both their blessings to work with Dr. Sherman after noting psychotherapy was the only thing I haven't tried - Sarno insists upon it afterall. I consider my work with these 3 docs to be complimentary, ongoing, and committal.
    Last edited: Mar 30, 2023
  14. miffybunny

    miffybunny Beloved Grand Eagle

    Fair enough, yet here you are. Some of the details you provided here are new, and you mentioned my name. Consulting with an MD is always indicated when there is a high level of doubt. There certainly was vacillation at that time and it doesn't sound like things have solidified or improved in your mindset based on your comments. In any case, despite the fact that you are engaged in the best path possible for yourself, something is still missing ....belief in the approach and belief in yourself. While it's true that some people never get better, it is not true that you can't. No one is excluded from healing.
    Last edited: Mar 30, 2023
  15. Louise D

    Louise D Peer Supporter

    @rand , I just want to add my voice to those encouraging you not to blame yourself or to receive blame from others if you have not healed. No one should overconfidently make declarations about you and your ability to heal. We all know so little of each other. I know you already said that you are not receiving blame from others anymore, but I wanted to encourage you anyway. I think it is more than fine to look at your own situation and question whether you are one of those who can't heal and then continue to seek it because you don't know. Nothing at all wrong with that. I think if Dr. Sarno were still alive today, his understanding of the mind-body connection would be evolving and growing and changing as people's experiences add to knowledge. I'm glad you spoke up. You are an encouragement to me.
    Sita likes this.
  16. miffybunny

    miffybunny Beloved Grand Eagle

    Blame and responsibility often get conflated, just as self pity with compassion, just as encouragement with enabling. No one here is blaming @rand for his situation, but he IS the solution. I say that with one billion percent confidence and this approach for FULL recovery is guaranteed. Taking responsibility for your own recovery is empowering and liberating. Resigning oneself to coping, usually leads to learned helplessness and victimhood. Of course that is up to the individual to choose. We are free to stay sick and believe we are "broken", and we are just as free to walk away from TMS symptoms. Just to clarify, TMS means there is NOTHING wrong with you. When one embraces that diagnosis, they heal...that is a direct quote from Sarno btw. Expanding on Sarno's concepts does not mean taking mammoth steps backwards on the trail that Sarno blazed, into resignation, hopelessness, and dependency on the medical mill. In fact the past 30 years of neuroscience has only proffered more proof that Sarno's premise was correct. In addition, if you need to see results in the body in order to believe in your ability to reverse tms and to lose doubt, you will be waiting a long time.
    Last edited: Mar 30, 2023
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  17. Louise D

    Louise D Peer Supporter

    I would have to disagree that no one here is blaming @rand for his situation. To blame is to assign responsibility. Blame and responsibility are intimately related. I don't know you at all, miffybunny, just as you don't know me. I did, however, see that you have grouped people into the willing and the unwilling when it comes to healing, the implication being that the willing DO heal and that those that don't are unwilling. I must disagree with you. To say that anyone who is willing will heal is not a claim that anyone can make and be able to back it up with evidence. You are making very big sweeping guarantees even in your most recent comment. To do so IS to blame/put the responsibility on those who do not heal as the problem.

    We are "mindbodies". There are many things about our bodies that work the same and there are things that work differently from person to person. Similarly, there are many things about our minds that work the same, but there will always be the possibility of differences. There is a danger in being too sure of ourselves that we know what will work for every mind and every "mindbody" because it worked for us or many others. That is something that the medical mill has already gotten wrong for a long time. By the way, it is not and was not my intention to argue with you just because we disagree; it was to encourage @rand.
  18. miffybunny

    miffybunny Beloved Grand Eagle

    The willing and unwilling refers to fighting doubt and choosing to believe you are already well. The willingness to stop buying in to the twisted logic and lies. "If you believe you can you are right. If you believe you can't you are also right." There comes a point when a person must decide. Encouragement and contemplation, without action and implementation (changing your beliefs) leaves you exactly where you are: stuck in your own mental prison. You'll stay as long as you want but when you're ready you can walk out of it. I'm not here to tip toe around the truth because my singular focus is getting people better. The details vary but this truth remains.
    Last edited: Mar 30, 2023
  19. Louise D

    Louise D Peer Supporter

    @miffybunny, it is not my desire to create drama or an argument in forums such as these. I have already said my piece. I'm glad you have found healing and that you help others to find it.

    @rand, I stand by what I have said. I hope you will continue to seek healing. If you would like any further encouragement, you are welcome to private message me.
    rand likes this.
  20. miffybunny

    miffybunny Beloved Grand Eagle

    Dan Buglio's timely video from yesterday, for anyone reading here who may need a reminder:
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