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Question for Forest rop

Discussion in 'General Discussion Subforum' started by miffybunny, Jan 19, 2014.

  1. miffybunny

    miffybunny Well known member

    Hi Forest, I've been listening to your podcasts and I'm really enjoying them. A member mentioned that you have a video clip re: RSD. If it's negative or scary in any way I don't want to watch. Your feedback is truly appreciated.
    MiffyBunny
     
  2. miffybunny

    miffybunny Well known member

    Anyone?
     
  3. Forest

    Forest Beloved Grand Eagle

    Sorry miffybunny! I've been up in New Hampshire with my family. My brother has a five month old and it's my first nephew. I offered to help with childcare while they prepare their house to go on the market this spring. With so many distractions, I wrote the following, but somehow forgot to post it:

    Hi miffybunny,

    Are you referring to the call in discussion group podcasts? I think we have a really great group of co-hosts for that. Whatever it is, I'm really glad that you are enjoying them. If you could point me to the specific episode, that will help give me a better sense. It can always be reassuring to hear success stories from people who are like you, but don't forget, it's all TMS, so the treatment is the same.
     
  4. miffybunny

    miffybunny Well known member

    Hi Forest,
    I was referring to a clip re: people with RSD (Reflex Sympathetic Dystrophy). I am going through a terrible time right now but I don't want to post a thread that would bum people out. I have been taking Nortypytyline and Trileptal for severe neuropathy and vasculapothy in mes feet. RSD is poorly understood and although I have conquered severe TMS in the past ( I was taking 7 ultrams a day and ditched them in a second after reading Sarno), I despair that RSD is in another category. The side effects from these drugs were realy getting to me (weight loss, dizziness, hoarseness etc. ) so I skipped a dose yesterday since I was feelimh quite confident it was in my power to reverse this. Unfortunately by evening the RSD was back with full force (toes feel broken,indescribable Burning frostbite etc.) which caused me to feel defeated and disheartened. Early this morning I woke with a violent migraine (threw up), took an Imitrex and had the most vivid hallucinatory dreams in my entire life. I was awakened by my kids who I had to get ready for school. I literally feel like I'm dying.
    I'm sorry to ramble so much but I feel so alone ( except for another member here - Lavender who I don't want to make feel bad either). Everyone is so wonderful on this site but I'm terrified that I'm deluding myself. It would be so much easier if my pain was muscular skeletal. I even conquered interstitial cystitis but they all pale in comparison. They don't call RSD the "suicide disease" for nothing. Thanks you so much for reading. It means a lot and I appreciate the important work you do. You seem like such a wise person. Thanks again,
    MiffyBunny
     
  5. Walt Oleksy

    Walt Oleksy Beloved Grand Eagle

    Hi, Miffybunny. I don't know about RSD but Forest will help you or find someone who will.
    Don't despair. If anyone can help you it will be Forest or someone else on TMSWiki.

    Reflex Sympathetic Dystrophy and the "Suicide disease" both sound like awful names for the pain you have.
    I take it from your post that a doctor diagnosed it as RSD and prescribed the medications. The side effects sound awful.

    Your symptoms do sound like TMS. Are you working on TMS healing techniques? They're in Dr. Sarno's Healing Back Pain
    and Steve Ozanich's The Great Pain Deception. TMS healing, as you probably know, is mainly believing the pain is from
    repressed emotions. Have you done some thinking in that direction?

    We're not doctors so we can't and won't say not to pay attention to what doctors say or stop taking medication they prescribe.
    But if nothing else is helping, it sure wouldn't hurt to think TMS is causing your RSD and focus on learning what
    repressed emotions you might have.

    We're here for you and with you. You're going to get pain-free. Think positive that you are going to be rid of the pain.
    Even tell yourself you already are pain-free.

    Walt
     
  6. miffybunny

    miffybunny Well known member

    Hi Walt,
    Thank you so much for your kind words. I'm sorry about all the typos in my post! I was quite upset when I wrote it. I am a huge Sarno fan and have been doing everything in my power to beat this but I'm at a loss. If only there was someone I could talk to who had this. Sometimes people get misdiagnosed with RSD by neurologists but in my case it's textbook....lancinating knife pain in bottoms of feet and toes, bone marrow edema, color changes, temp changes etc. It started in the big toe (my son stomped on it). At first I just thought it was sprain and ignored it for too long. It spread through right foot and then went to my left foot. They say that the pain becomes centralized. I am in touch with my reservoirs of rage, sadness, guilt and fear and I employ every method in all of the experts books but this seems to be a beast in a different league. I know Lavender suffers from this as well so my heart goes out to her. I always thought I could conquer anything but I guess after seven months it seems that I need these medications to get by. As a woman, shoes are important to me as superficial as that sounds it affects my self image. I'm sorry to to sound like such a downer. I guess I was just shocked that skipping the pills would cause my pain to skyrocket like that. I was soooooo confident that I had this down. I appreciate your feedback tremendously though!
    Forest, I give you a lot of credit for taking care of your baby nephew! That's a lot of work lol!
    MiffyBunny
     
  7. Walt Oleksy

    Walt Oleksy Beloved Grand Eagle

    Hi, Miffybunny,
    I won't try to say you don't really have RSD since you have the symptoms for it and are convinced it's textbook.
    You've read the TMS books, but you haven't healed.

    The book that Herbie and I are writing will have a lot more TMS techniques for healing than anyone has written so far.
    It isn't published yet, and it still needs some fine-tuning, (Talk about typo errors!)

    I have two suggestions for you. One is to email me at waltmax69@gmail.com and I will email you the manuscript
    for Herbie's and my book. In it you will find TMS healing methods no one else has in their books.

    The manuscript also will suggest that you ask God to heal you. Herbie and I both believe that helped us heal.
    I'm no religious "nut" or extremist, but Herbie is more into religion and has read much more on healing through faith
    than I have.

    You would get some great new ideas on how to heal, and also would be helping us a lot.
    We need to have some people like you to read the manuscript and let us know if you understand the
    healing techniques. Otherwise, we need to clarify them more.

    Take your time reading the manuscript. We won't be ready to have it published for at least another month.

    If others are reading this and would like to read the manuscript, email me as well.

    You're going to heal. We won't let you stay in pain. God won't let you stay in pain, if you ask His help.

    Meanwhile, have a cup of hot relaxing tea. I like Chamomile with its natural herbs.
     
    North Star likes this.
  8. miffybunny

    miffybunny Well known member

    Hi Walt,
    That's wonderful!!! I can't wait to read your manuscript! I will email you later for sure. Thanks again for brightening my day.
    MiffyBunny
     
  9. Lavender

    Lavender Well known member

     
  10. Lavender

    Lavender Well known member

    Dear MiffyBunny,
    I saw your post and didn’t want to end the day without sending a cyber-hug just to let you know that you are not alone. Due to the mention that you are still in the parenting years, I can tell you that the “experts” say that there is a better chance of coming out of it at that time of life but that it lessens in the later years. I know that is so because I had what a University Hospital Dr. called, “Some of the properties of RSD” from 1989-91. Heavy medications were given for 3 years. This episode of RSD was preceded by one of the most traumatic episodes of my life. The story of my recovery then might not be appropriate here but for all those years following, I was fine.
    In 2010, I had the exact same set of circumstances that you had. It began with simple toe lift exercises that eventually went to the other foot and then centralized. When I heard the diagnosis, I went into extreme anxiety as I was told that it “comes out of remission. Well that doesn’t make any sense to me. Instead, I think I had TMS traits all my life. Dr. Scott Brady says that when many stresses occur during a short period of time, the autonomic nervous system does not have time to dial back down. This time around, I had 4 major stressors beforehand. One would suppose that understanding possible causes would be the instant key to recovery. So no, I haven’t seen a breakthrough yet, but I must give this all TMS method all I’ve got. My life is precious and I want it back! So is yours!
    Funny, But I was just wondering about you because it was helpful to read your positive declarations posted before your recent difficulties. I understand where you are coming from. I feel as though fear is more significant than any hidden anger (in my case) and it makes sense that the fear perpetuates the cycle of chronic pain.
    I remember that we were both in agreement that this forum is much more uplifting than the RSD forums. I was encouraged when you said the RSD was TMS only revved up.
     
    Forest likes this.
  11. miffybunny

    miffybunny Well known member

    Hi Lavender!
    I pm ed you at the exact second you posted! Synchronicity? I totally agree about the RSD sites. They destroy my confidence and cause me to despair. I think for me, rage and terror are at the root of my RSD. I've had relentless stress and a series of traumas during the past 7 yrs. I'm so glad we have eachother for encouragement! I love this site so much as well....it's my lifeline. Pm me anytime !
    MiffyBunny
     
  12. Forest

    Forest Beloved Grand Eagle

    Hi Miffybunny,

    My personal belief is that RSD, like fibromyalgia, is 100% TMS and that you can get over this. Of course I'm not a TMS doctor, so you'll have to work with your doctor and make your own decisions, but it definitely has all of the hallmarks of TMS in my mind. I'll send an email out to some TMS practitioners to see if anyone has any inspiring stories to share.

    In the meantime, I don't know if you've found our TMS search engine, but it could be just the thing that you are looking for. Just go to http://search.tmswiki.org/ and type "RSD" in there. Better yet, you can type in "RSD -miffybunny" to find everything that mentions RSD but excludes all of the threads that you have posted in.

    I hope you enjoy Walt and Herbie's book. They've been through a lot and there is a lot of wisdom in there.

    In terms of the specific video, the only one I can think of isn't very good. If you can afford it, I think it could be very helpful to work with a TMS practitioner, perhaps over Skype if necessary. Lavender is very wise to say that TMS can be driven by fear (check out balto's recent posts for more about the importance of fear), and right now you are confronted with waves of fear about your symptoms and the lack of control you feel. A skilled TMS practitioner can help you contain and manage that fear. Fear activates your autonomic nervous system, which gets you all jittery and makes it much harder to think straight because it shuts down the more reasoned parts of your brain as it prepares you for fight or flight. Learning to be aware of the activation of one's autonomic nervous system (ANS) can be a key part of healing from TMS. Once you "get your head right" and learn to approach your fears from an authentically more mindful place, EVERYTHING gets better. It doesn't come immediately and you have to listen to your own inner voice to find out what works for you, but I've seen it happen a million times, and I know that you can do it, too.
     
    North Star and Anne Walker like this.
  13. miffybunny

    miffybunny Well known member

    Hi Forest,
    Thank you so very much for your advice. Unfortunately there is so little info. on RSD as it regards to TMS. The two cases I've come across - one on this site and the one in "MindBody Prescription" do not reflect RSD. In my opinion these individuals were misdiagnosed. They had some form of TMS but not in the RSD category. Their stories and symptoms were nebulous and did not describe the color changes and temperature changes or the hellish burning. I did not see myself in their stories. In the past when I suffered from leg spasms, lower back pain, piriformis pain etc. I did. Another hallmark of TMS is that the pain moves around. My RSD pain never changes. It's always in the same exact locations (knife pain in certain spots, burning and vascular spasms in certain spots, feeling of broken toes in all the toes except the pinky toe. Also if I skip a dose of my meds (they are not pain killers) the pain comes back with a vengeance. I do not consider myself a placebo type of person and I don't rely on props or gimmicks, gizmo machines, or any form of alternative therapies. Aaaaah....so frustrating.
    If you can obtain any info. on bonafide RSD cases I would be eternally grateful! It would help me with an "evidence list".
    I was thinking the same thing re: contacting a TMS practitioner. It bothers me that I was able to do this in the past so easily but I'm not able to conquer this beast of RSD. This is yet another source of anger and fear. I absolutely avoid the RSD sites because they're a horror show. Even the ones that are supposedly inspiring are incredibly depressing. I'm also looking forward to reading Herb and Walt's new book.
    Thank you so much again for your thoughtful replies and all your help!
    MiffyBunny
     
  14. Walt Oleksy

    Walt Oleksy Beloved Grand Eagle

    Miffybunny, Herbie's and my book do not specifically cover RSD but it does offer several techniques
    for TMS healing. It's not published yet but I would be glad to email you a copy of the manuscript so
    you can take a look and see if any of the techniques might help you. If you want me to do that,
    please email me at waltmax69@gmail.com
     
  15. Forest

    Forest Beloved Grand Eagle

    Hi Miffybunny, I've got some preliminary information that may be of interest. I don't know if they are exactly what you are looking for, but I'm sure that every little bit helps. The information is not mine, but comes from a very smart TMS practitioner whom I contacted. Both use the term CRPS, which I understand to be synonymous with RSD.

    The following is a review from Howard Schubiner's book, Unlearn Your Pain
    Turning point for me,
    December 20, 2013
    I have CRPS. Five years ago it was in both legs, both arms, left ribcage. I couldn't brush my own teeth, slept packed in eight pillows, I was trapped and told there was no cure. I was pretty desperate, I did not want spinal stints or other treatments. I figured that this book couldn't make things worse, at the very least, it might make me feel like I could do something when I couldn't do anything. Dr. Shubiner's book and CD were my first 'leg-up' (so to speak) and opened the path for me to find other methods that also work for me. It was from him that the idea that this was a mind/body syndrome was a revelation. I began the program, and after four months was able to bend my legs to get into a wheelchair; after six months I graduated to a rollator; after another six months or so more, I graduated to a cane. When I had another bad flare-up the ketamine drip was being pushed hard as an important option, I pulled out the book for the third time. November 2011 was the last time I had major swelling and the doctors are astounded that I have been in remission this long. I find that each time I work my way through this book, I deal with different issues. After all the research I have done since I first encountered this book, and learned more about brain plasticity, I am better able to trust this empirically. My condition is chronic, and Dr. Shubenstein gave me the ability to take ownership of my recovery. For me, once through the book isn't enough. I must return to this at least once a year, and I do. I have other tools that I use, I have to, but I never would have found them if I didn't get this book first. I still listen to the CD, and because it worked so well, I have found other "mindfulness" tracks that also help me. Dr. Shubiner was the first step in a journey I was never supposed to take. I was lucky to find this. It's a lot of work, but for me, that's fine. No one is going to do that work for me, and I don't want anyone to. I have control and I call the shots.​

    Here is the link:
    http://www.amazon.com/review/RSAZZHI40K0F8/ref=cm_srch_res_rtr_alt_1

    In the following TED Talk, Elliot Krane, a pain doc from Stanford discusses CRPS. He shows a young woman with a deformed hand due to swelling and discoloration who healed by exercise and psychotherapy. He doesn't discuss the role of stress, but it shows how even severe physical changes of CRPS can revert to normal.

    I hope this helps!
     
    G.R. likes this.
  16. miffybunny

    miffybunny Well known member

    Hi Forest,
    Wow those examples are incredibly helpful and hopeful!! Thank you SO much for researching for me! Yes sometimes I say CRPS (which some people pronounce like "crips") but that term sounds creepy to me lol and I feel Reflex Sympathetic Dystrophy is more accurate, but it's just semantics...I hadn't seen that review of Dr. Schubiner's book because I had purchased it in 2012. What a powerful testimonial! I often wonder if children and teens recover faster because their brains are more neuroplastic and they expect to get better? When I was younger it never occurred to me that I wouldn't get better or I wouldn't get the job that I interviewed for, for. example. My expectations were always positive probably due to the fact that I was naïve...
    I really appreciate your replies and did I mention I love this site? :)
    MiffyBunny
     
  17. Ellen

    Ellen Beloved Grand Eagle

  18. plum

    plum Beloved Grand Eagle

    miffybunny (so cute), I've been through a similar bramble patch with regard to is this/is this not tms? I have a form of trigeminal neuralgia and for a while I got a bit lost. Forest has been a gem and has helped me get to where I am now, which is here: I don't think it matters what something is called or how it behaves or how it 'should' be treated. In the end the tms approach is an essential part of any healing and is broad-shouldered enough to carry a few tweaks that make it work for us.

    You have friends here. Many of whom are healed and many who are well on the way. Take heart my darling.
     
    Ellen, Forest and Lily Rose like this.
  19. Anne Walker

    Anne Walker Beloved Grand Eagle

    Miffybunny, I am just reading these posts for the first time. I just wanted to share a very strong feeling that came over me when I was reading your posts. I understand very well searching for someone that has successfully overcome what you are going through. It can provide tremendous hope and reassurance. And yet somewhere there is always a first. If you can'f find those success stories, then perhaps you were meant to be the one to lead the way. You have clearly been through so much with TMS, You have had so many other symptoms that clearly are TMS. So you know how prone you are. I know the big question is whether RSD can be caused by TMS or not. It truly is unbelievable the kind of suffering we sometimes have to endure. My heart goes out to you because so many times I too have felt alone, afraid, and in anguish over the inability to find any relief. Sounds like the medications are almost as bad as the RSD. You are in my thoughts and I truly hope you find some relief soon.
     
    Ellen and Eric "Herbie" Watson like this.
  20. Lavender

    Lavender Well known member

     

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