Great success with Back Pain, Currently struggling with Hip Pain

First, I'll go over how I overcame severe back and leg pain after two failed back surgeries with the help of Dr. Sarno's books and Dr. Eisendorf's clinic in Santa Cruz, California. Then, I'll describe my current dilemma dealing with hip pain that I'm convinced is TMS, however the methods I used years ago for back pain are just not working...

"The back pain started in the winter of 1999 – 2000, coincidentally after I bought a new exercise machine (that for some time I blamed for causing the pain). I was referred to a doctor at Stanford who specialized in back pain. He was not a neurosurgeon, but instead was a physiatrist focusing on rehabilitation related to the musculoskeletal system -- bones, joints, muscles, ligaments, tendons, and nerves. I had lots of PT sessions as well as follow-ups with this doctor over many months. In the late spring of 2000, I had an epidural injection in my back that for a week seemed to reduce the pain, however it quickly came back in full force.

I continued seeing this doctor into the fall of 2000, and I finally told him I wanted a second opinion. At that point he suggested I try his new experimental procedure called an IDET (where a heating probe is inserted into the suspect vertebrae, and the vertebrae is roasted). We did this procedure in early 2001. The pain increased significantly after this. I continued PT at a new clinic and walked extensively every day. Sitting normally in most chairs was very difficult, and we bought a special electric recliner that provided a “zero gravity” position. Also, I built a special contraption out of PVC pipe that would hold my laptop and mousepad when I was fully reclined. When not walking, I spent the majority of my time in the chair. I took lots of Vicodin. My sensitivity to chairs was so great that when we went out to dinner I had to go into a restaurant and check out sitting in the chairs before we could actually go in and eat. Also, I could not stand in one place for any length of time without extreme pain and was therefore terrified of travel where I might have to stand in a security or immigration line. The pain was not only in my back but occasionally there was pain and burning shooting down my leg. Since the pain was not located at the site of the suspect vertebrae, doctors tended to call this “referral pain”. Doctors also described my vertebrae that showed narrowed nerve canals on MRIs as having “degenerative disc disease”. It turns out if you search a lot of studies, you find that where MRIs were taken of older patients for other reasons but happen to also show their spine, most of them show the same disc degeneration over time but had no back pain. Essentially, everyone’s discs degenerate as we get older.

By the end of 2001 the pain was more or less at the level it had been prior to the IDET. I then decided it was time to try a more drastic solution and started interviewing neurosurgeons. I met with at least four, and together with them went over the MRI pictures. There was a narrowing of the nerve canal on the right side of a vertebrae, and my back and leg pain was on the right side of my body. Being an engineer, I saw this as a structural issue and believed this was the cause of my pain. I wanted someone who said “I can fix that”. Of the two most prominent neurosurgeons I interviewed, one of them had operated on a friend of mine, and his back pain was better after surgery. As we looked at the MRIs, however, that surgeon said “The nerve canal is a little narrow, but I don’t see why it’s causing you so much pain. I’m not convinced you really need surgery.” The other of the top surgeons looked at it and said “I can fix that”. So, in early 2002, I had what’s called a “laminectomy” where the surgeon removes bone within the vertebrae to widen the nerve canal, and also removes a portion of the partially collapsed disc. Another program of PT started, and I gradually felt better for a period of about 2 months. In the spring of 2002, more negative things occurred at the company I was consulting to and the pain started to worsen again. I went back to the neurosurgeon who operated on me and he ordered more MRIs (I believe to protect himself from a possible “failed surgery” lawsuit). He said that I had developed scar tissue, but that should not cause the pain. When I asked him why the pain was not located near my spine and he said “Actually, the causes of back pain are not well understood”, a profound comment in light of what I subsequently learned.

In addition to PT, I also started treatments at an acupuncture clinic in Mountain View. The pain continued to get worse and by early summer was worse than ever before. At this point, I was truly desperate and was closest to feeling suicidal than any other time in my life. I couldn’t sit, couldn’t stand, and not only was I miserable but I felt I was ruining my wife’s life. Not knowing what else to try, I decided to seek out a different acupuncture practitioner and found a woman in Los Altos fresh off the boat from mainland China. She didn’t speak English but occasionally her daughter was there to translate. As opposed to the standard one hour sessions at most clinics, she would spend as much time as she felt was appropriate (up to 3 hours, without additional charge). At the beginning of each session, she would take the back of her fingers and run them down from my back across my hip and down my leg in order to sense the temperature (and therefore the circulation level). Then she would do whatever she felt appropriate to increase the circulation including things like a treatment called “hot needles” and an unusual steam treatment done on a special bed. Although she spoke little English, the thing I remember most was her making me promise to NOT use ice and only apply heat – again focused on increasing circulation. Unlike the “painless” sessions at most acupuncture clinics, hers were not painless. They helped temporarily after each treatment, but I still was trapped in the same hell.

Then one weekend, my wife was talking with her sister-in-law who told my wife that she had a friend with back problems, and that friend was trying to get an appointment with a special doctor in Santa Cruz. The doctor (Dr. Eisendorf ) specialized in back problems and had studied with a doctor in New York named Sarno. At this point I was willing to listen to anything and looked up Dr. Sarno on the Internet. One of the first references was to his book called “The Mind-body Prescription” on the Amazon website. It offered the preface and beginning of the book as a free sample, and I started reading…

He described the personality type that is prone to mind-body disorders, and that seemed to accurately described me – a person who is driven, perfectionistic, and strives to be seen by others as a good person. He also listed common afflictions that are psychogenic - in other words real problems and/or pain that the body creates in order to distract the mind from painful thoughts. Many of these afflictions are things that I have had in my life:

· Chronic acid indigestion

· Nervous Stomach (IBS/gas)

· Stress-related skin problems:

o Hives, Lichen Planus, Rosacea

· Chronic back, leg, and shoulder pain

· Hay Fever/pollen allergy

· Plantar fasciitis

· Migraines

I’m a reasonably pragmatic person, and since I had already tried everything medical science could do to fix my back pain, it dawned on me that Sarno’s theories could very well apply to me. I remember the exact moment when I thought: “Oh my God, I’m doing this to myself!”.

It subsequently took months to be pain free (a gradual uphill climb -- 2 steps forward / 1 step back). However, from the moment of this revelation, I never again had a pain level equivalent to the days before. Also, the amount of pain meds required to make life tolerable immediately started decreasing.

The next day I called Dr. Eisendorf in Santa Cruz, told the nurse I was a TMS patient, and was given an appointment right away. He diagnosed me and concluded I probably did have mind-body issues, and suggested I attend some of his group therapy sessions with other TMS patients. I also bought Sarno’s other books and read them multiple times, starting with “The Mind-body Prescription”. I also did some writing about the things at work I believed had initially caused my problems. Three or four times over the coming weeks I made the drive to Santa Cruz in the evening for his group sessions. I remember at least one session included a presentation he had assembled showing data from different medical studies. The group sessions were quite useful, since as I listened to other people describe their experiences it helped to reinforce in me that this was truly a psychogenic problem and not a structural one. Overall, I would say it took about 5 or 6 months before days went by without noticing any back pain.

If you read any of Sarno’s books, you will see that he describes the main mechanism by which the body generates pain (real, honest to God pain) is by manipulating circulation in the area affected -- typically muscles and tendons in the case of back, leg, shoulder, and neck pain. He explains that the body’s mechanisms for controlling circulation exist to support the “fight or flight” response where certain muscles receive additional oxygen and other muscles receive less. Looking back to my many sessions with the Chinese acupuncturist, it makes sense that she was focusing so much on trying to establish circulation in the areas where I was experiencing so much pain (although she never told me why).

In one of Sarno’s books, he pointed out that since this really wasn’t a structural problem, and since PT was not really helping anyway, it was best to not continue PT. This was extremely hard for me since my PT therapist had worked so hard for so many months to try and relieve my pain. None the less, one day I explained to her I planned to try something different since everything I tried had not worked, and part of the new program was to discontinue PT.

As far as what events and situations tend to trigger my episodes with mind-body issues, I now believe that over time it frequently includes situations where I don’t have control over the problem that’s gnawing away at me. I’m typically a very control-oriented person, so that seems consistent. I believe the main contributor to my back pain was the political situation at work involving one of the board members and one of the cofounders. This was something that tortured me for months and I was powerless to fix it.

Another example where control was a contributor to a mind-body problem had to do with my first migraine. Up until that point I thought a migraine was just a bad headache. No one ever told me about the “lights” that appear and completely destroy your ability to see clearly for 15 minutes. For some people this precedes an actual headache, but for me I only got the lights. I remember the moment at work after I had turned the company over to the 2nd CEO (as agreed years earlier with the VCs), and I was then responsible for a few special projects. One day a resource I had for my most important project was commandeered by someone else, and I was powerless to prevent it. Within minutes the lights appeared and scared the hell out of me since I had no idea what a migraine really was. Over the next couple of years I had a few more migraines. Eventually I discovered how they were caused and was able to force myself to recall my thoughts just prior to the beginning of the migraine. Today, I have not had a migraine for over 15 years."

Now to the issue surrounding my current hip and leg pain dilemma...
In 2010 my wife and I built a new home in a beautiful location with tremendous views, without paying attention to the political climate in the area. Things were great for four years until one day someone shot a deer in our backyard. At that point it was clear "we were not in Kansas anymore". In 2016 a neighbor built a house next to us and decided that even though our rural cluster (1 acre lots) development should never have backyard shooting, he persisted in doing so. Over the next two years we had a number of altercations with him resulting in a major blowup in 2018. Not so surprisingly, my leg pain started just after that. I knew it was TMS. I tried to treat it by reading all of Sarno's books again, listening to TMS meditation tapes, and seeing multiple psychologists including two that were definitely trained in mind-body medicine. Nothing has worked.

I've had some reduction of pain on occasion by using Alan Gordon's "somatic tracking" technique, but that has not cured the problem. My feeling is that those techniques can reduce chronic pain where your body gets into a loop where it expects pain, but they don't treat the origin of the pain. In my case, I know my current pain mostly originates from my anger at the political situation - both locally and in the nation. Last year we decided we couldn't take it anymore and bought a lot in an area an hour from here where people are more like-minded. We hope to start construction on a new home there this year. My reality is that unlike the situati0n that caused my back pain years ago (a situation that had passed by the time I learned about Dr. Sarno), the cause of my hip and leg pain is still there facing me every day.

I fully understand that I'm doing this to myself, and I'm letting the poltical climate do this to me. But try as I might I have not come up with a way to overcome the pain. I sometimes wish I could be hypnotized and purge this anger to make the pain go away. So in conclusion, I'm still looking for a solution.

Last, I hope the story of my back pain experience can help a few people. I wrote that up a few years ago to give to friends and reatives who have back pain. Unfortunately, in general people don't want to admit that their mind could be involved in generating their pain. On the TMS Wiki , however, folks are at least open to the idea.

 

Anger is exactly what Sarno tells you to explore.
It's not the conscious anger, the stuff you are aware of, but the unconscious anger, and probably has a lot to do with your feeling the need to control things, that you simply have no control over. I absolutely understand this, and essentially you just fight a futile fight. You aren't accomplishing anything or changing anything - it's just a vicious circle. I also know exactly where you are coming from with some of your external stressors.

Your mind is still stuck on the structural aspects of Sarno's work or goes to events or circumstances (external stressors). But Sarno explicitly points out that it's the internal stress you generate with your thoughts about yourself, and the emotions you push aside that cause the symptoms - and that emotional work is needed, especially to feel and experience anger. I think you've done much of the work, but getting stuck in anger isn't allowing yourself to physically feel it, and pass though you, which takes mere minutes. When it gets stuck, it becomes a state of mind and similar to other symptoms by being a distraction just like fear, depression, pain/symptoms or anxiety does. Dr. David Hanscom talks about this kind of anger in his blog posts on Back In Control website. He was stuck in anger and nothing satisfied him, and he realized he needed to pick and choose his battles and work on finding some inner peace. It took him to do some journaling and some alone time for soul searching. He had to recognize how current patterns related to past patterns and how his personality traits effected his mindset, and work on dealing with it all.
You are exactly correct in seeing that things like Somatic Tracking don't treat pain, they aren't intended to. They are intended to help your nervous system to stop reacting so strongly to the symptoms - but it never addresses the emotional or mindset work that Dr. Sarno layed out.

Go to places like: your neighbor and how you feel he has been violating your most intimate values - and how that has happened in your past, and how you felt about it.

Things that you are feeling are going well in your life. Often we think the best relationships, circumstances etc. are without anger or sadness, or we are without guilt or shame in them ... consciously. Unconsciously we are experiencing all those feelings. Of course you can't necessarily tap into everything subconscious, but you can let your mind know that these things can be experienced and felt, and it's perfectly OK to do so.

At some point you have to recognize that your external stressors will be there even if you were all alone on a desert island. You can't keep moving away from everything, you need to do a bit of soul searching and come to terms with how you can exist with peace of mind in a world that doesn't match your ideal. You probably are fully aware of this but it's something you may avoid facing because you identify with your pragmatic side, and this is a bit more of a spiritual thing.

 

Congratulations to you on your initial journey. Coming from a family of engineers and those with engineering mindset I know that the Sarno method is often dismissed by those who seek logical, structural solutions. And my sympathies for you for moving into an area that didn't align with you politically. Ugh! We came close to doing that a bunch of years back as well and thankfully came to our senses before hand (and luckily the people didn't accept our offer! bullet dodged.)

From the length of your post, I'm going to surmise that you have A LOT to say and a lot inside you. I'll bet even writing that post must have felt a little bit good. Have you done any expressive writing where you grab a piece of paper and let your mind go and write whatever, with special focus on "what am I angry about?"
Not on the computer but with an actual pen (or digital pen) and paper (or e-paper). There is something powerful if you can get into the zone and let it flow.
For me it's almost trance like. Perhaps that is what hypnosis is like? But I digress....

Editing to add: I get those eye auras without pain too. I hate them!!!

 

CactusFlower, I very much appreciate your insight and suggestions. You're very perceptive in realizing I have a tendency to be in control and that things that are out of my control drive me crazy. As I go forward I'll work on that more. Some months ago I made a list of things I could and could not control, but I didn't keep it up or go back to it. I'll do that now.

 

Remember the pandemic? I can still recall my reaction the first time I read a mental health article, a few months in, about how the pandemic represented the worst of two situations that human beings really can't handle: uncertainty and not being in control. And I realized that I'd been gradually feeling that way since (ahem) about 2016 or so (enough said about that). Continuing to recognize and accept this as the new reality is a significant factor in trying to maintain my equanimity these days. It's not easy, my friends! Aging doesn't help - esp considering that the rage of age is the trigger that tipped my lifelong mild TMS into a full-blown crisis back in 2011 when I turned 60. Somehow, that trigger is still there... ...and yet I'm still mentally and physically better at 73 than I was back then, thanks to this amazing work.

So yeah, there's a proper load of shit out there to cause rage and fear: perfect fuel to feed the repression mechanism. You already know what to do.

 

My TMS "coach" (actually a fully qualified LCSW in California, but not in my state, so I can't call her my therapist) might point out to you that you're putting a ton of pressure on yourself to somehow "properly" deal with this internal conflict. And that Pressure leads to Judgement, which leads to Repression. And we all know what comes from repression, right?

I didn't mention previously that expressive writing (aka "journaling" but you don't keep what you write) is my #1 go-to technique.

Nicole Sachs described in a recent podcast episode why she recommends setting aside a minimum of 20 minutes, because the real stuff doesn't start coming out until just prior to that point. ie, "in the zone".

 

Recognize the “dives me crazy” is really “enrages me to my core”. I understand this!
I also had to learn that controlling what I can control doesn’t mean that this control will benefit me by making me happier or giving me peace of mind, or won’t negatively affect others. Sometimes I have to choose to letting the can control go too.

The funny thing is, I can spot the need to control in others, quite easily.. but it can be sneaky with myself. You have to deal with the idea that a fixed and precise outcome will “answer” (meaning your brain thinks it will answer, but that’s not really true) whatever your brain is perceiving is dangerous.

 

One of the things that I've noticed is that when I'm doing my "write shit down," Sometimes I'll suddenly get really tired. Not just normal tired but deep, overwhelming tired like I have to stop and sleep RIGHT NOW. I assume that is my TMS brain saying, "warning! warning! painful stuff approaching. Shut down all systems!" So I force myself to keep my eyes open and keep going.

 

I'd like to add someting that is occasionally giving me some temporary relief while I work on the TMS root cause of my leg pain...
For those of you who have severe upper leg pain while walking and have been told it’s due to hip arthritis, I have a suggestion that, while not removing your pain completely, should noticeably reduce the pain while walking. A CT scan of my right hip shows severe arthritis, however due to my experience with TMS and back pain two decades ago, as well as my propensity for TMS afflictions in general, I know that the pain and loss of strength in the upper portion of my right leg is undoubtedly due to TMS.

When I was dealing with back pain, before I learned about Dr. Sarno and TMS I was desperate and tried everything conceivable. One of the many things I tried was what I sometimes refer to as the “posture clinic”. This was a group that had decided that the roots of any spine-related pain lie in the fact that in our Western culture, we tend to have bad posture. They tried to teach us how to stand, sit, walk, and even had us practice sleeping positions, all with an eye towards relieving our pain. Of course it didn’t get rid of my pain, however I did learn something that I’ve been using recently to temporarily reduce my pain while walking.

The trick has to do with how we anticipate pain, and to some extent correlates with the “neuro-plastic pain” that Alan Gordon and others describe. If you’re having leg pain while walking, notice what happens with your stomach muscles just before you step onto your bad leg. In anticipation of the pain, those muscles tense-up big time. So the trick is to force your stomach muscles to relax. In fact, actually let your stomach hang-out. If you’re like me and are slightly paunchy it may feel a little weird, however I would much rather feel weird than feel the full force of the pain. With your stomach muscles relaxed you will notice the pain of the next step is less, because you’re essentially telling your body to not be afraid of that next step. If you believe in TMS you know there’s really nothing wrong with your leg or hip, and that you are in fact not in danger.

Now I don’t always remember to do this, just like I don’t always remember to do somatic tracking. However there are many times when I’m walking and I feel the pain getting greater and greater. At that point I actually stop walking briefly and “reset”, where I force my stomach muscles to relax and then I start walking again while concentrating on keeping those muscles relaxed as I walk. Invariably when I do this, the pain is less when I resume walking.

Of course this doesn’t get to the root cause of your TMS, so that’s something I and others still need to work on. However give this a try and see if it reduces your leg pain in a noticeable way.

 

Amazing, isn't it?

Which of course is the #1 thing that makes the difference between stuck vs success. And it's not easy, but it absolutely can be done with what our parents would have called good old will power.
{note: the above is a response I started to write, I guess a couple of weeks ago, and didn't finish}

 

[@quattro, I'll just repeat what I said on that old thread where you also posted this]:

Very cool, @quattro,and good advice, too - similar, really, to Dr Sarno when he said that medication, for example, can be used to give you a break from the pain as you start "doing the work", as long as you are very clear with yourself that the medication is a temporary tool to remind your brain of what it feels like to not have pain.