30 years of chronic back pain - my TMS story (still evolving)

Hi all,

After having embarked on my TMS journey last December, I thought it is time to add my story to this forum - a story which is still evolving...sorry for the long story below, but I will give an executive summary at the beginning for those who don't want to read my blurb before I dive into my life of pain and TMS re-awakening:

Short Summary
1. Up until Dec 2013 I had been suffering chronic low back pain for 30 years! The last 10 years have especially been quite difficult essentially experiencing an average of 8/10 pain levels, pretty much non-stop.
2. Over the years I had tried many doctors, physic's, chiropractors, and a few other "outside-the-square" remedies. For 25 years I persisted with acupuncture which provided some relief most of the time, but even that eventually became useless.
3. I had also seen numerous back specialists, and orthopaedic-/neuro- surgeons and even a pain management course. The recommendation was surgery due to a prolapsed disc. I have had about 6 epidurals, 2 facet joint injections and in 2007 I had back surgery - microdiscectomy of L5-S1. All this did nothing to alleviate or reduce the pain. By 2012, I had given up all hope of reducing my pain - I accepted I just had to live with it. Searching for solutions was just becoming too disruptive to one's life. This meant that my back pain completely took over my and my family's life. It also started to wear me down psychologically (it takes a lot of mental energy to continually deal with high pain levels).
3. By 2013 I was onto regular prescription painkillers, having reached up to 250mg of Tramadol a day. Eventually this stopped working as well. It took me months to get off these - the withdrawal symptoms were not nice, but I did it.
4. Last December (5 months ago) I came across Dr Sarno on the web for the first time. What a life changer!! Living in Australia, where TMS is pretty much unheard of in the medical community, I had to self-diagnose. It wasn't hard given I had practically tried everything with no results. I knew after reading Sarno's book this was the answer - I am a people pleaser and a bit of a perfectionist. There is also a strong barrier inside me that doesn't allow me to 'feel' my emotions. The perfect TMS cocktail!
5. It is now May 2014 and after about 5 months of hard work following Dr Sarno's and Schubiner's prescriptive TMS/MBS work as well as work with a somatic psychotherapist (probably the only one in Australia who is TMS aware), my back pain just in the last 2 weeks has started to significantly reduce. Yesterday I sat in a training course for 8 hrs straight with only low level pain! I could not even have dreamt of this last year. I am also doing a bit of bike riding now - this only a few months after a life of spending most of my hours, lying down and avoiding most activities and fearing my back would self destruct if I wasn't careful!
6. But my work is not done yet...Whilst the back pain is now starting to subside, the pain often moves to a new area - to my jaw (both sides at the same time with some pain in the neck and sometimes travelling down to my diaphragm). This pain, which I remember occasionally having as a teenager, can be quite severe, but I know now I have it on the run!!
Whilst I still have some work to do, I can say now with absolute confidence that TMS is real and is the answer for dealing with my pain. Below is my detailed story to date and I hope it helps and inspires others to release themselves for the clutches of pain...even after 30 years, TMS still works!

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My TMS story -
I have been suffering from low-back (sciatic) pain since I was 17 years of age (30 years ago). It started as an innocuous "tight" hamstring which within a matter of weeks led to bouts of excruciating pain which would stop me in my tracks. There were times where I would stand up after sitting for a while and I would be frozen in pain. Being young and active and carefree, I would push myself through this barrier and suddenly find myself being able to walk, run play sport etc. But unfortunately after a some time, the pain would return and started to interfere with different aspects of my life, with sitting being the most uncomfortable. Eventually I went to a couple of GPs who informed me that I had sciatica (even though the X-rays I had done didn't really show anything significant). I was told I had to stay active and fit and just monitor how things go. For the next 10 or so years I would have constant low level back pain with the occasional flare ups but still managed to stay fairly active avoiding the obvious high impact or strenuous activities. I was even practising martial arts which I figured could only be good for my back long term.

However, at year 11 of my back pain, I suddenly had a massive flare up. I couldn't move for 3 days and was confined to bed, after which I slowly started to get out of bed. I even jumped in the pool a week later and would just swin 1 lap in agony. I was at university doing a postgrad and would stand at the back of the room during talks or classes as sitting was excruciating. Eventually I went to the doctor who referred me to a back specialist who told me I had a prolapsed disc. He recommended an epidural which I initially resisted, but eventually agreed to. Extremely painful experience (it was in the days when they did them blind). I didn't really get any relief from it, but he sent me to a physic who worked with me to get active again and after getting into exercises (the usual stuff) and lots of swimming, I started to improve to the point where life was bearable again. I even had a second epidural but it made things worse so I thought enough of that stuff. Looking back now, I know the epidurals really had no effect.

For the next 10 or so years (taking us up to around year 20 for my back pain) my pain levels went up to a moderate range, with sitting still being uncomfortable and just bearable, with minor flare ups occurring a little more often. By this stage I was starting to forget what being pain free was like all those years ago. I was persisting with my martial arts training but hamstring injuries and missing sessions where happening quite frequently. Eventually I started to curtail many of my fitness activities only keeping the swimming which was still pretty benign in terms of pain.

Around year 20 of my back pain, the pain started to escalate with another major episode of pain (I attributed it to a work trip at the time) and went in for a couple more epidurals which again didn't do anything. Pain levels were now in the 7/10 range consistently with sitting becoming almost unbearable. The impact on my life was now more significant as I withdrew from most normal activities and avoided sitting like the plague. This continued for 2 years, with talk from specialists/doctors of surgery, but I resisted. Then at the end of 2006, I experienced the worst back pain imaginable. I ended up in bed for nearly 3 months, experiencing 10/10 pain for a while. Getting out of bed and going to the bathroom was torture! Having a shower was also torture and I had to make it as short as possible with my wife helping to dry me while I was lying down in absolute agony. I lost 15 kg (33 pounds) in 1 month - not easy to eat lying on your back when you are in agony.

After a couple more epidurals, lots of acupuncture and several visits to specialists and surgeons, MRIs showed that I had a disc rupture, with a piece of disc broken off. I caved in to surgery and had a micro-discectomy of L5-S1. This was my hope for reducing the pain...unfortunately it was not to be!

My general 7/10 pain levels, instead of abating, actually continued to increase and since then till the end of 2013 (that around 7 years) I had been living with average pain levels of 8-9/10 with occasional flare ups. My life completely changed for the worse. I started to avoid anything that caused more pain (sitting, most activities, etc) and for a while at work I would stand all the time in front of my computer. Eventually standing would becoming too painful (but not walking interestingly enough), and I resorted to lying down any time I had to work on my computer (my office essentially had a bed in it). Thankfully I worked for a very understanding company and they accommodated me.

Unfortunately though, the high pain levels completely dominated my life (and my family) and I had pretty much given up hope of ever eliminating my pain. Even numerous epidurals, acupuncture sessions, facet joint injections, a pain management course and other alternative treatments made no difference.

Then in December of 2013, I accidentally came across a Dr John Sarno on the internet. I saw his book Healing Back Pain, read a few reviews and thought, “Hmmm interesting…looks too good to be true, but maybe I should look at this”. I ordered the book thru Amazon and when I got it I read it in a few days.

Just like many TMS sufferers, I could see myself on most pages. I am first and foremost a People Pleaser and have also got some aspects of perfectionism thrown in. I started to do the exercises recommended by Dr Sarno (re-reading the book, listening to it on my iPod or iPhone every day, journaling and ignoring everything anyone ever told me about my back), and interestingly two weeks after reading the book I had 2 pain free days, for the first time in 30 years!! Unfortunately it didn't last, but my pain levels gradually decreased by around 40% and I started to notice that I could start to sit a bit more than usual with reduced pain. So I knew I was onto something. I also bought Dr Sarno's other books and devoured them. I bought Schubiner's Unlearn Your Pain and also went through most of the exercises.

However, I made the mistake early on of benchmarking my relatively slow progress too much on other's successes. This was a mistake I realise now which set me back a bit. The anxiety and frustration of not progressing magically as quickly as others in eliminating my pain started to work against me. It didn't matter how much journalling, meditation, TMS reading I did, my pain levels were only being reduced by about 50%. Still this was something. But I was getting frustrated that I wasn't getting better in the 2 or so months that most people seemed to be reporting. It wasn't until I got the courage to consider seeing an appropriate psychotherapist that more success would eventually come. In Australia, a psychotherapist who is TMS aware are as rare as hen's teeth. But as luck would have it, the only one I could find in Australia had 2 clinics in the same city I live in. You sometimes wonder about coincidences ! The psychotherapist convinced me to stop measuring my success and just foci on the TMS work. I decided it didn't matter how ing it would take, I would just continue the work.

Doing somatic psychotherapy was new to me but after persisting with it for a few months, I am now starting to see some rewards. Literally in the last 2 weeks, my pain levels have dropped even more with my average back pain now usually in the 3-4/10 range, however, as many others have experienced, the pain often moves to my jaw, and seems to usually (but not always) occur when I start walking or go from doing one job to another. It's almost as if something is trying to slow me down again. But this means I now have it on the run and am working on the brain talk to try and defeat this new pain. The pin will sometimes go back to my low-back but I know this is just my brain fighting back! Occasionally I will even feel pain not eh opposite side of my back, but I can easily talk my brain out of that. I have also become more active and about a month ago started bike riding again being able to go on a 3 - 4 km bike ride without any negative impact on my back. This feels great and is further proof that there is nothing wrong with my back.

So this is my story thus far, but my journey continues. I would be interested in any tips on how best to deal with the pain moving to new sites based on other's experiences...at the moment my brain talk does not seem to be as effective in stopping the jaw pain.

Cheers,
jimbob_oz

 

Hi, Jimbob. You did yourself and all of us a big favor by writing in depth about your pain.
You are doing great and will get totally pain free as you continue with what you are doing.

It's great that you are more active and bike riding.

You know from reading about TMS that pain can move around. Your unconscious mind thinks
you have found some of your repressed emotions but it may not yet be totally convinced you
believe the pain is from them and they are not structural. Or you may not have discovered
all the repressed emotions that may go back to your childhood.

You didn't say if you have been thinking about or journaling about your repressed emotions,
or if maybe your pain comes from a perfectionist personality or other traits.

Some people have healed completely without journaling or considering their personality,
but for most of us, that has to be done.

The main thing is, keep doing what you're doing. Don't rush your healing.
It will come and it looks like it's going to come real soon.

Stay positive and put another shrimp on the barbie!

 

Hi, Jimbob. I'm new to TMS this week - at least to the definition, I think I've had it for a long time. I'm glad you mentioned that you are no longer letting the miraculous healing of some others discourage you, because I am one of those lucky ones, and yes, I realize just how lucky I am. But like you, I had 30 years of back pain before I discovered TMS. I read Dr. Sarno's book in a day, went to bed thinking about it, and for the first time in decades woke up with no pain. I did already have a strong belief in and personal experience with the mind/body connection, but because of what I thought were legitimate diagnoses of scoliosis, arthritis, and bad discs, I never thought the back pain was due to the mind/body. Learning about TMS was like fitting the last piece into a jigsaw puzzle. I went through most of what you did, except that whenever I considered surgery (I'd been told I had a 50/50 chance that it would make it worse), I would go back to the Internet and search for anything I hadn't seen before. And this week I found 'Healing Back Pain' by Dr. Sarno.

Your post made me wonder at coincidences myself. First, our sharing of the 30 year pain experience. Second - I just had my first experience of the pain moving. I came out here looking for info about that. I never had any neck pain that I can recall of any kind. Today, while doing my first serious, deep-diving journaling I started to get pain up both sides of the back of my neck. It hurt to turn my head from side to side. I tried to ignore it, and it spread a bit downward into my shoulders. So I started focusing on the idea that there is no structural reason why I should be feeling neck pain suddenly, and I thought of oxygen moving through my veins to that area, and the pain went away. Then when I went back to what I had been doing - there it was again. So it's been coming and going in waves - when I try to ignore it, it seems to be trying harder to get my attention (and take it away from the journaling). But I know for sure this is TMS - I mean, come on, how else could I be turning it on and off like a light switch with my own mind? I'm glad I had resources like you out here that let me know the pain can move, or I'd have been saying to myself 'Oh, now what? Haven't I had enough?'

Good luck with your journey!

 

Hi Walt,

Thanks for your reply and encouragement. I have done quite a bit of journaling on repressed emotions and with help of psychotherapy i am slowly getting in touch with a lot of rage in the inner child. As a people pleaser I have totally ignored the inner child with the parent mind totally dominating and suppressing my emotions. It has been a challenge connecting with this when the pain comes on strong but I am slowly getting it. It's amazing how automatic the repression of emotions is. A lot of this started in early childhood. It has also been difficult accepting some of this.

In truth of late I havent journalled a lot so I am starting to increase this again. Thanks for driving that point home...

I am also finding Mindful meditation and Tai Chi very helpful. I can always stop any pain in its tracks with mefitation, I just need to extend this into everyday life.

Cheers
Jimbob_oz

 

Hi Debbi1955,

good to hear that after such a long pain episode you are making some quick progress. I don't think I was completely convinced at the beginning about this idea of pain moving, but having experienced it there is no doubt anymore. Early on I would have very short term movements of my back pain - to the opposite side, to my knee, or thigh - but these were very short and I could easily talk myself out of them, but the pain would always go back to its resting place - my back.

But the last few weeks has been a different story, where the pain has moved with a vengeance to my jaw. It tends to happen in waves, but when it does, there is no pain whatsoever in my back, even when sitting, the biggest trigger of back pain for my whole life. It is turning out to be a challenge to stop the jaw pain, but I am working on it. I guess the mind will do its damnest to convoke you that you have a new problem so that you don't deal with negative emotions. Don't take no for an answer...

Keep up the good work...

Cheers,
Jimbob_oz

 

JimBob, I like this video for TaiChi and meditation:



Cole has others on YouTube and also full length DVDS that I like, too.