23 year old honest recount of 11 years of TMS suffering

Hey guys,


I have been lurking about on the wiki for the past 7 weeks and think it is time I finally come out and share my story so far. I want to share the trials and tribulations that have accompanied realisation of what has been causing the pain all these years, as well as seek support through interaction with all of you who have gone through or are currently going through TMS and all that it entails.


My history with TMS goes back 11 years. My first symptom was left foot pain at 12 years old, which could never be identified on imaging, it was simply attributed to overuse from all the athletics and sport I was doing at such a young age. What followed was a series of pains that led to an eventual hip replacement at 21 years of age. I will attempt to be as succinct as possible given my history, along with many of you, is quite detailed, painful and complex.


The left foot pain lasted a couple of years until it was eventually treated with an orthotic boot to ‘relieve the pressure’. I had been struggling with severe foot pain for a while; pushing through it by continuing my training until eventually I could no longer. I was instructed to wear the boot for 6 weeks and was diagnosed with having ‘flat feet’. After the 6-week period, the foot pain stopped but all of a sudden the left hip started to hurt. I was 13 years old at the time and no one could explain this sudden onset of hip pain following the cessation of foot pain. Eventually, what followed was a complete degradation in my physical state. I went from being an athlete, training six days a week to being unable to walk or move at all. I spent 10 months on crutches, was in and out of hospital, put in a wheelchair, diagnosed with a bone infection, treated with antibiotics for 8 months, spent weeks in hospital on a drip, had a bone biopsy, repeated CT’s, MRI’s and X-rays, blood tests, cortisone injections etc. I was put to bed and had completely lost the ability to move, my muscles had atrophied as a result of immobilisation and yet the doctors were still puzzled as to the cause of my hip pain.


I saw various specialists, orthopaedists, rheumatologists, infectious disease specialists, physiotherapists, physiatrists, chiropractors, spiritual healers etc. I saw everyone. What makes my story a bit unusual is that there never was an official diagnosis and I was constantly told I was a ‘phenomenon’, to ‘ask the man upstairs when the pain would disappear’, that ‘plenty of people get around with a stiff hip’, ‘to not mind the crutches even though I went to a competitive sports high school’, all these statements coming from highly regarded medical specialists. Eventually, I was told I simply had severe arthritis, avascular necrosis, and at 14 years old, sitting in an office, one surgeon told me the pain will never go away and that I needed an immediate hip replacement. I still remember being completely devastated at the lack of compassion and care, given I was only 14 years old. I asked the surgeon if it was a little soon to be getting a hip replacement given I was so young and he really had no reply. At this point my hip had completely seized, I had no movement at all, and to top it off, the bed rest had caused my muscles to completely atrophy and I was left with severe pain and an inability to even attend school or leave my home.


Unknown to me or anyone else at the time was that a lot had been going on in my life at that point, with my family and a range of other stressors that are a normal part of existence. No one was aware of this, and I was always one to repress any emotions and thought myself pretty resilient given the stressful situations that had arisen in my life at the time. TMS had always been behind what was going on but lack of knowledge led to serious problems. My parents were also devastated and in a last ditch attempt they took me back to there native country and hoped the doctors there would be able to help given the poor care I received in the country I had grown up in. The next 5 years were spent travelling back and forth between Australia and Poland, constantly having to adjust my life back home in order to receive ‘treatment’. My first interaction with the medical profession in Poland had good results. Given my muscles were in such a state, my whole body was out of proportion, my entire musculoskeletal system had suffered as a result of the bed rest and I did have extensive physiotherapy, electrical stimulation, laser therapy, hydrotherapy, and hyperbaric chamber treatments (which, ironically enough was a treatment that involved breathing in pure oxygen). I had good results in the sense that I finally got off the crutches and had a reduction in pain but the stiffness stayed. I underwent painful proprioceptive neuromuscular facilitation techniques that left me screaming in pain as my therapists tried to manually manipulate the joint, trying to get it to move. All of that was to no avail though as the stiffness persisted. My hip had seized but at least I was able to go back to Australia and continue finishing my education and resume somewhat of a normal life.


I was kicked out of school due to the repeated absences and had to scramble by finding an alternative way of finishing my secondary education, which I eventually did. I went on to further defy the odds so to speak by enrolling into university and successfully undertaking a law degree. The stiff hip became a part of me; the next 5 years were a balance of trying to maintain my life back home and constantly taking extended trips overseas for treatment. I suppose I did eventually develop an actual physiological problem from TMS as a result of the constant muscle contraction, the joint seized and surgery was needed, I do believe that. I had had repeated flare ups of sciatica pain in my right leg, the ‘good leg’ throughout this dreadful ordeal but it was always attributed to overusing the right leg because the left was in such bad shape. The sciatica would come and go but just before I had surgery, my right hip started to get quite sore. Surgery was a complete success in the sense that I had restored all mobility and recovered from such a major procedure in pretty much a few weeks. Given I was constantly swimming and trying to remain active despite the stiffness, my muscles had been in pretty good shape at the time of surgery and the joint sat in well.


It is amazing to note that, just like Dr. Sarno says, we have amazing abilities to heal, and surgery was evidence of this. I had undergone major surgery and yet the recovery rate was so fast, I had pretty much healed in a few months, left the crutches 2 weeks after surgery. Overall, it was a successful artificial resolution to a psychological problem that had gotten way out of hand. Once I had successfully ‘treated’ the left hip, the right hip became increasingly painful. Cutting another long story short, the right hip has caused me absolute hell the year following surgery, and again, no doctor could explain the reason for it. I had been most recently diagnosed with a ‘torn labrum’ or ‘some kind of a fracture’ all of these NORMAL ABNORMALITIES as Dr Sarno would say. Again, feeling disillusioned with the medical system at home, I decided to go back to Poland, and I did. I was treated with physical therapy, Orthokine (the most modern day approach to ‘treatment of joint pain’) and yet it was all to no avail. The doctors were baffled as to the cause of my pain as they, at least, were able to admit that these structural abnormalities could not produce the kind of pain I was having. I had been struggling to walk, was having shooting pains down my leg, along the sciatic nerve, in my right gluteus, the front of the groin, then along the quadriceps, it was constantly moving, shifting, burning, tingling, aching, sharp pains at times, other times it was weakness, buckling etc. At least they were able to acknowledge that they really did not know what to do, back home they were ready to tell me I needed to start taking calcium tables for Osteopenia (another ridiculous invented medical condition).


I was at my wits end really. Devastated. I had to take my studies with me overseas so I wouldn’t miss out on the semester and I was struggling to deal with this new pain, daily. I had started having panic attacks while crossing the road, at any moment I was waiting for another attack, I couldn’t walk anymore, I was overwhelmed and scared. By some miracle I happened to come across the work of Dr Sarno, this was really at one of my lowest points. Immediately I decided to stop all forms of ‘treatment’ and had to deal with the pressure of family and relatives thinking I had lost my mind. I improved immediately, I returned to training, that is, doing Pilates, the cross trainer, walking around all day, really, I had immediately turned my life around. The pain was decreasing daily and I kept listening to podcasts of interviews with Dr Sarno, reading success stories, journaling, and reading the books. I realised just how much of a goodist, perfectionist, people pleaser I am and found it ironic that given all that had happened the last 11 years, everyone that I met and to all those who knew me, I was the most happiest person they knew, the most relaxed, the most positive. I have only just recognised all of this in coming across TMS and the personality characteristics of people who suffer from such a benign albeit disruptive and devastating condition.


You may be wondering where I am now. Well, I am about 7 weeks into this whole new discovery that has changed my entire perception on pain and I have finally discovered what has been causing all my troubles. I have had success in overcoming fears, the same fears that many of you deal with but there is a long way to go. Most recently, I am not sure if I am experiencing a flare up, extinction burst or just stress from having spent 7 months overseas and returning home in a week, but my pain is pretty severe at the moment. I refuse to be intimidated but I am struggling. I know it is TMS and it is desperately trying to get my attention, I know the pain is harmless but it has been unrelenting this last week. Something triggers it and then I immediately become conditioned to associate pain with various postures, sitting, standing in one place etc. Having the people around me constantly ask if I am in pain, watch me, monitor me and pity me does not help with trying to deal. I hate having to explain to people the psychological basis but I am putting enormous pressure on myself to show them that what I am doing is real, to prove to the entire world that I am not some kind of a cripple despite the years of pain. I know this is not about anyone else but about me, yet I am struggling.


At this point I have only started meditating, and am hopeful of the positive effects it will have, yet I am scared. I am not sure what is causing the pain at the moment, I will remain persistent and determined because I really believe in the diagnosis. I am disheartened at the moment though and would appreciate some advice. I have a feeling there is a lot of repressed emotional pain and turmoil that needs to be expressed, I have found on occasions I simply cry and once I do the pain is relieved but I can’t seem to induce this kind of a reaction even though I think it would help a lot.


Just like the rest of you, this is only an excerpt of so much more painful experiences, emotional turmoil and drama. I suppose I just wanted to share what has been going on so far and to hear some words of advice from any of you who have had similar experiences. I am determined to get through this, once and for all, I am onto it but the struggle seems to never end. I will keep you updated as to the progress.


With love,


Ana

 

great story Ana. many are in same boat in regard to the pain coming back. that's particularly disheartening but you believe in the diagnosis and have experience some relief using the methods.
Use that as confirmation that you must focus on the psychological aspect.
I found that when I wrote down symptoms that couldn't possibly be due to injury I diluted the power of those symptoms. You should communicate to those around you as best you can what is going on despite their unwillingness to believe.
I would consider ISTDP (intensive short term dynamic psychotherapy)...or if you can afford it The Hoffman process. David Hanscom is a surgeon who employed Sarnos methods to overcome his own pain and wrote a piece on Hoffman therapy
http://www.drdavidhanscom.com/wp-co.../Staying-Connected.-Interview.-March-2012.pdf

Also a key point that is repeated is 'don't force it'. the more you focus on making a recovery the less likely it seems to be. Many have mentioned that when they stopped worrying about recovering or getting rid of the pain and simply focussed on emotional excavation the pain dissipates and goes away.
It's a really strange phenomenon but its the only thing that has give my mind some rest.
Best of luck in your recovery!

 

Hi Ana,

I am new here, but am in awe of how you went through all of that medical treatment and kept up your studies. I don't want to offer advice, as I said I am new, but I would think there would be anger at all of that medical stuff you went through. That is definitely trauma in and of itself. I appreciate your sharing, as every story I read helps me in my own process. I hope you have a day of some peace.

 

Wow, that is quite a story. It sounds to me like you have a great deal of resilience and endurance. This will help you along the way. I agree with Barb that there is probably a lot of anger around the medical profession that needs to be processed. Also, maybe some childhood issues that you were going through at the time. You were very young, it must have been hard to process all of your feelings at the time.

For me journaling helps release blocked up feelings. Everyday I journal, and everyday I cry a little while journaling. Sometimes I just write x's on the paper. I think the x represents anger and also just wanting to x something out and make it go away. It's not a very elaborate feeling, but it is there. The SEP helped me get my feelings out in a constructive way.

Thanks for sharing, Peggy

 

Hey all,

Thank you for your replies, i really appreciate the kind words and support.

I think i might consider psychotherapy when i return home, i think what is playing on my mind a lot is that i have been through so much and maybe the pain will not cease until i get that repressed sadness and anger out, then again, this may just be TMS trying to keep me preoccupied :/

Although i have read The MindBody Prescription and have been journalling etc, i have missed the SEP. I decided yesterday that i will start from day 1 and undertake the SEP as though i am starting out again. I feel like this will help quite a bit, i flicked through the program these past few weeks but did not attempt it consistently, i will now do this and believe it will help quite a bit.

I will keep you all posted as to the progress.

 

Hi, Ana321. I'm glad you've decided to restart the SEP. It helps keep us focused on the process toward TMS healing.
Our journey can at times take us off into different directions. The SEP is a great way to follow a "Yellow Brick Road"
to a healthier, happier life. Dr. Sarno is the wizard who put us on the right path.

 

Thank-you for telling your story. It has reminded me about how severe and destructive TMS pain can be. I recently encountered a series of recurrences. From time to time, I become taken in by the same old pain story that my mind wants to hand me over and over again. It just never gives up and strikes at the worst of times. This time I was shaken out of it by a friend who fell from the mast of a boat and was told he would never walk again. He refused to give up and now is not only walking, but running everyday. The power of the mind to help or hurt us is just amazing!

Best of luck to you and keep up the good work.

 

Ana,

Thanks for sharing your story with us. Relapses are difficult. I had one around Christmas after being pain free for over a year. I've gotten some relief since then, but still have a low-level residual amount of pain that just won't budge. I have some ideas about why the pain has re-emerged, but no certainty. But I've learned that analyzing it is counterproductive, and learning to live with uncertainty is part of the healing process. So I just spend about 45 minutes a day, as recommended by Sarno, thinking about TMS and working on it (reading, journaling, meditating). And then I forget about it and go about my day, not letting the pain keep me from doing anything.

I think your decision to do the SEP is a good one. I may start another structured program again soon, if this last bit of pain doesn't leave.

Keep us posted on how you're doing. I wish you well.

 

Hi Ana,
Welcome to this community of wise and caring people! Your story was easy to read, and also heartbreaking: all you've been through.

To me this is a pretty good clue about how you might relieve more symptoms over time. You can feel the emotional release, the melting, the "not trying" when you cry. There is a melting and a self-compassion in crying, at least for me. It also confirms for you the emotional cause of your pain, rather than the physical. How nice to feel yourself deeply, without making yourself wrong for feeling it.

I think psychotherapy might really be great for you. You find yourself drawn to it. I think Alan Gordon will do it with skype if that is helpful.

In this quote from you, I perceive your very active mind, and anxiety about being thrown off by your desire to fix things, of maybe letting the TMS distract you with the idea of therapy. This kind of doubt and fear is natural, and we've all been through it. The mindfulness you learn with the SEP will help you with observing the thoughts and not necesarrily going along with them. With so much pain and desire to heal, the stress causes an anxious mind...

These quotes show to me your studies of Dr. Sarno's work and your self awareness is already deep. Just reading these three quotes, you have enough evidence right there to explain all your symptoms. Contemplate your self-pressure, the conditioned responses, and your personality type. Try to be patient with yourself. Let the SEP process have its effect on you. Observe your doubts and fears, and witness them. Tie them to your symptoms, and leave them alone. None of this tense inner life you have has to change, in my experience. The cure works when we see that our inner life is what causes the symptoms.

Love,

Andy

 

Hey all,

Thank you for all the responses, really appreciate them at this moment.

I will continue with the SEP program but right now i am really struggling. I have started TM meditation and find it really helps reduce anxiety, i am only at the start of my practice but i am hoping with time i will release a lot of the built up anxieties, fears etc.

I keep on pushing myself daily, i don't want to become a prisoner and stay indoors all day long so i keep trying to remind myself it is alright and i step outside and walk around but its been pretty rough. I am having frequent recurring acute attacks where the muscles in the front and back of my right hip just keep spasming, i'll be walking around and just be in complete agony, its so dreadful.

A bit of background may help here. I have spent the last 7 months overseas, primarily Poland and i am returning home to Australia in less than a week. My whole reason for going overseas was to 'get better' and it was a hopeless mission until i discovered the work of Dr. Sarno. I was on the right track and now boom, just before i am about to return i am limping severely. The thought of coming through the airport doors to see my parents after so long sporting a severe limp is really hard to deal with. I have had so many terrible experiences with the medical system back home and the last 11 years have been rough, i understand that i am really stressed about going back and settling into my life again whilst trying to deal etc but i don't understand why knowledge of the process is not resulting in a resolution of symptoms. Maybe this is a shallow and desperate statement because i understand the more you stress about it the worse it gets, i understand mindfulness, i get it but it just seems like i am failing at the moment (exactly what it wants, again, i know) but finding the strength right now is just seeming so unfair and difficult.

I am fighting conditioning as well but everything i have been doing is so disheartening at the moment. I know Alan talks about success not being determined by good or bad days but by how little you care and yet i can't seem to not care, i am getting preoccupied and really struggling against the thoughts that keep creeping up in my mind like 'this ordeal will never end'.

 

Hi, Ana. My advice is for you to just ride out the pain and soon you will be back home in Australia.
Then you can work on the cause(s) of your limping. It's your subconscious mind giving you pain
so you will discover its psychological causes... repressed emotions that probably go back to your childhood,
and/or a perfectionist and "goodist" personality.

TM meditation is a wonderful way to deal with emotional stresses.
Deep breathing, living in the present, finding ways to relax that give you pleasure.

Keep confident that you are going not only to be pain-free, but through TMS knowledge,
you will be healthier and happier than you ever thought possible.

 

Funny Walt I was looking into TM meditation.
Brian Rose is an ex-Banker guy who set up a Youtube channel in London and here he goes into his own routine for meditating and offers some great tips such as wearing eye cover and even using construction ear blockers to obtain silence easily.

 

Ana,

I think you are putting a lot of pressure on yourself. Part of healing is learning to accept ourselves with our pain and our limps, and to know that we are still deserving of unconditional love. You're having a relapse. It is part of the process. You were pain free once, and you will be again. Don't lose faith. Practice acceptance. Try to relax and enjoy returning home.

 

Thanks Walt, that last comment you made really hit me, that i will not only be pain free but will be happier and healthier then i ever thought possible. That's a real turn around on my current thought pattern.

In terms of TM, i have only started meditating this last week and it is honestly one of the best investments i think i have made. I know the results are yet to come but it really has reduced a lot of anxiety already and those 20mins twice a day are moments i am starting to treasure.

IrishSceptic, i really like the video you just put up although with TM eye covers or construction ear blockers are pretty unnecessary in my opinion. The technique is incredibly simple and you really fall into a state of relaxation quite quickly that an awareness of your surroundings disappears almost completely. My teacher has also mentioned that it is possible to meditate with background noise which i found i did a few days ago. Thought i might share

 

Thank you Ellen, that is pretty spot on..

 

Yes!

Ana,
You are pressuring yourself to heal and have inner tension and are returning to loved ones , believing you need to be someone different (cured) to boot! Just seeing this, connecting your pressured inner life to the symptoms is enough. It may take a little time though.

----you see this so clearly. Connect this with the pain. Witness someone else going through this, and you can easily see how this downward spiral of tension feeds on itself. The pain and fear is there to distract you from deeper feelings. What are those feelings? Keep contemplating this question, without having to necessarily find the "perfect answer" that will stop the symptoms.

Accept the relapse and simply connect the symptoms with deeper feelings, as best you can. Those feelings probably won't change, but the cure is seeing how they are causing the symptoms. Don't give up hope. Limp all over the place! It is your life, not someone else's. I see how far you have come in learning Dr. Sarno's work. This understanding will not go away.

Andy B.

 

Wow Andy, thank you so much for your post, some really powerful and insightful words there.

I will really attempt to take on what you suggested and really appreciate what you have said so much.

All of you guys have been great so far, will keep you posted.

x

 

Howard Benson is one of the most credible advocates of a mindbody approach. he estimates 60-90% of ALL doctor visits are stress related. he describes the relaxation response and coined the term in the same room at Harvard Medical school that the stress response was first described.



its really incredible what the human body can do.

Ana, you might like to try this meditation program I shared on this thread. all free of course via the blessed intervention of Youtube.

http://tmswiki.org/forum/threads/8-week-mindfulness-course.7111/