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Ana321
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Ana321

Peer Supporter, Female

Ana321 was last seen:
Jan 22, 2018
  • My Story

    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
    1. Susan1111
      Susan1111
      Ana I just read your profile story. All I can say is you are truly an amazing strong woman. I believe with all my heart you've got the will and courage to win. I'm routing for you!!

      I hope you don't mind the personal note but I couldn't possibly read your story and not comment.

      Warmly, Susan
      1. mike2014 likes this.
      2. Ana321
        Ana321
        HI Susan, thank you for the encouraging words, they are much appreciated. Often we just keep moving forward without realising just how strong we are or how far we have come. I actually haven't read over my story in a while, reading back over it sparks even more compassion for myself and what i have been through.

        Lots of love,

        Ana x
        Jan 23, 2016
        Susan1111 likes this.
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  • My Story

    Gender:
    Female
    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