About a dozen people have contacted me since I posted about SD as a mind-body syndrome on the NSDA support bulletin board and then started this blog. So I was wondering what kind of progress anyone is making? It might be helpful to all of us to share.
And by way of reinforcement, last week, the NY Times had a front page article on the back pain epidemic in the U.S. that begins 'Americans are spending more money than ever to treat spine problems, but their backs are not getting any better' ... 'and that many popular treatments may be ineffective or overused.'
This is exactly as Dr. Sarno describes it in his books. As long as the medical community (and patients) continues to 'compartmentalize' the mind and body in their thinking and treatments, no one is getting better. So let this be a sign of encouragement that at least there is acknowlegement that something is not working here. For those of us who have/had SD, this is kind of like getting to the point where we acknowledge that no matter what we do, our voice is not getting better. Now it's time to break out of 'status quo' thinking and consider the possibility that the mind and body interact as one. When this happens, all sorts of new possibilities for healing will occur!
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Well, since I read your post and read Sarno's book I have tried to keep the concepts in the front of my mind. I have had a LOT of back and neck pain since I started taking botox for my voice (no big surprise, got my voice back, so I need a new outlet for stress and rage). I've been seeing a chiropractor for a few years, since this whole thing started, and have felt frustrated that I'm kind of "addicted" to chiropractic adjustments. Well, I haven't been to the chiropractor since before Christmas and I'm feeling pretty good. I started exercising regularly and that really helps too. I hardly ever take Tylenol any more and I used to take it almost daily. In terms of SD, that's going to take me a while. I decided that I'm going to try to trust my voice as my botox wears off and see if i can push it a bit further. But the horror of losing my voice is still too fresh and my life is so good right now that I'm not ready to go back to a whisper. I'm drastically reducing my dose of botox and getting the same results and hopefully I can continue to do that. I'm trying to keep focused on the cause of my pain and voice issues to keep things balanced and in perspective but I assume this will be a journey that takes me a while. I waited a long time for a miracle cure that didn't come. I can wait for this to take some time. I'm just not ready to let go of the line just yet.
Sara...thanks so much for responding. I'm glad to hear that your back and neck pain is responding. And I think your are smart to be gentle with yourself, and to have patience. You will know when/if you are ready to forgo the botox. Your success with back and neck pain is encouraging.
It might help you to know that I read and tried Sarno's approach a long time ago (for neck and back pain) and while I believed it, I just wasn't ready to give up all of my other approaches. I continued chiropractic and physical therapy 'just in case'. Then I forgot about Sarno (unintentionally...I just took my eyes off the ball and got sucked back into looking for physical 'cures') and only came back to it last year and that's when it came together!
Lynn,
I really appreciate your blog. I am not making much progress. I have had SD for almost four years and recently I have had a bout with sinus for three weeks and my voice is worse than ever. I intend to read Sarno's book again and follow your suggestions. Thanks so much for your efforts.
Thank you Sashalee...I am glad that you found my blog. Sarno's approach is certainly not an overnight thing. We are all so indoctrinated with the idea that every problem can be solved with a pill or a shot, so it takes time to totally embrace this new way of thinking about the cause of our symptoms. Hang in there!
Hi Lynn,
I found you through Sara, who found me through the SD BB. I am trying to get other SD'ers to start blogs.
I was diagnosed in 2005. I only had limited success with botox and have given it up. I haven't heard anything about this Dr. you mentioned. I'll have to read your site more thoroughly and check it out.
Warning... if you go check out my blog,it is not just about SD. You can find my SD posts under the labels on the left hand side of the blog.
So, you don't have SD anymore???
Hi "Coffee Bean"!
Thanks for leaving a note! The answer to your question is 'yes'. I no longer have SD. And believe me, my SD was so bad that sometimes I couldn't get a word out, especially if the word started with a vowel. I do encourage you to read through all of the posts on my site to understand the approach that I used...and most importantly to understand Dr. Sarno's theory about repressed rage and physical symptoms. His approach is hard work, but it has released me from debilitating pain and SD. I highly recommend it!
I also have SD - I have the ABductor type. I have only started to explore your blog so I haven't read all of your posts or information about you yet but I wanted to say - YEAH for SD bloggers!
Do you read the NSDA bulletin board?
Hi Trisha! Nice to hear from you. Yes I used to be on the NSDA bulletin board daily...but not so much any more. The moderators really don't appreciate any posts that imply there is a mind-body connection to SD. My comments have not passed muster. They must think I am implying that SD is all 'psycological' and therefore not 'real'. Basically I have discovered that the BB is supported by the makers of Botox, so there is a definate bias to what they allow to be posted. That's one of the reasons I started my own blog. I hope you find my blog helpful!
HI again Lynn,
I'm starting to wonder about migraine syndrome in relation to ADSD. My husband has had bad migraines for years and I decided to read a book that was written by his doctor at from Johns Hopkins called Heal Your Headache. I also have a lot of headaches and I am also quite a coffee lover. I have always noticed that my spasms get worse if I drink a cup of coffee and I never understood why. Now I'm wondering if the caffeine tirggers a migraine (swelling and inflammation of the blood vessels in the brain, perhaps near the nerves involved with speech), making it difficult for the messages to get through properly. If stress and emotional trauma can subconscously cause changes in blood vessels, and caffeine is a trigger for migraine related changes in blood vessels in the brain, it may be that part of the problem with SD could be a related to a process similar to migraine.
I'd recommend the book of you're interested.
Any thoughts?
Hi Sara,
Sorry it took me so long to respond...the email notification of your comment went to my junk email folder! Anyway, yes, I agree with you to a certain extent. But is sounds like you are still focusing on physical and external causes for these syndromes. A migraine is what Sarno calls an 'equivalent' to TMS. So I encourage you to focus on the psychological explanation which gets at the root cause of the syndromes (migraine, SD, or back pain), and not the physical. In his book, Sarno suggests that these physical triggers such as caffeine are 'conditioned' responses or 'nocebos'-- the opposite of a 'placebo'. So if you expect that caffeine will trigger a migraine or SD, it probably will. Sarno explains it much better than I do...but I can say that his approach cured my migraines. I used to identify all kinds of triggers (alcohol, fragrance, pms, not enough sleep, menopause, etc.). But once I understood the underlying psychological process, the migraines diminished over time and now I hardly ever have them. I can drink caffeine, alcohol, champagne, stay up late, etc. None of it triggers a migraine. If I do get one, I immediately focus on the psychological.
I hope you find this helpful...I used to read the John Hopkins reports but no longer do. These reports only focus on the 'mechanism' or process of pain or whatever illness being discussed, not the the underlying cause of the process.
I was referred to this blog by a friend who is interested in my work using Dr. Sarno's concepts. I have treated a young man with very severe spasmodic dystonia, not spasmodic dysphonia I realize, but related, I believe. Anyway, he had incredibly severe and frequently occurring symptoms. I have a 4 week program based on Dr. Sarno's concepts, but utilizing a variety of cutting edge techniques (including mindfulness meditation, and therapeutic writing exercises) to help people overcome syndromes such as this. If you're interested, please visit my web site: www.yourpainisreal.com or my blog: www.yourpainisreal.com/blog
Good luck, everyone.
Howard Schubiner, MD
Clinical Professor, Wayne State University, Detroit, MI
Faculty Internist, Providence Hospital, Southfield, MI
I've had mixed sd for over thirty years now. I tried botox and it was very unpleasant and didn't last long. I was getting speech therapy at the time too. I'm currently trying acupuncture with minimal results. I'm willing to take a look at the mind body connection. Don't know what stress and rage I might have but am willing to try to find out. I'm impressed that you consider yourself cured. I have good days and bad days so there must be something to the mind body idea.
Regards,
Bernie
Hi Bernie,
Sorry for the very late response...I hope you have had some success. Let me know how it went for you! Lynn
Hi Lynn,
Thanks for getting back to me. I don't have any progress to report since I didn't follow through on the mind body connection. I will look into it again.
Best,
Bernie
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