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Please help - Brother with possible TMS????

Discussion in 'General Discussion Subforum' started by AC44, May 15, 2019.

  1. AC44

    AC44 Newcomer

    Hello There


    I have joined the forum as I have been searching for a possible answer for my brother who has had 3 years now of miserable pain which started off from a back injury in his lower back from Golf which has now spread throughout his back, neck, fingers, burning etc.

    I am keen to give a full overview as best I can (sorry it’s so long) as considering TMS and his family history and background, I believe it all has relevance.

    My brother Nick is a middle child; there is 3 boys (including Nick and myself) and one girl in our family and we lived all together with our mum and dad. During an extended period when Nick was around 8-12 my Dad was difficult and fearful to live with at times; it wasn’t always terrible but there were episodes of domestic abuse to our mum and oldest brother and quite frankly we lived in fear somewhat.

    Emotionally our parents lack support (our mum tried her best) and for all of us we have never been super close; we all struggle to show our true feelings with affection for example and my brother always felt deprived the most of attention and love (always felt forgotten). One other aspect of our family life was my Nick was extremely close to our oldest brother (Chris). My oldest brother (Chris) started showing signs of paranoid schizophrenia (which we were not aware of at the time) from around 19 onwards (Nick is 5 years younger) which resulted in Chris physically and mentally bullying Nick on a continuous basis for years. Nick lived in fear of Chris; his reasons for getting angry would be completely delusional and my parents never believed Nick as they thought it was just brothers fighting which of course it wasn’t. I also experienced this with Chris in my later mid-teens and I can certainly confirm how scary it was to live with someone you had no idea what they would do and would always use physical violence against us.

    On a personality basis, all of us apart from my mum suffer with mild to severe depression and have done from what I would suggest is early 20’s onwards really (Nick is 37). Nick also has a worry/concern on pleasing ppl; we all have social anxiety anyway and he feels a need to make ppl laugh as otherwise he feels they won’t like him to quite an extreme basis. Also, we hold obsessive aspects; golf for example for my Nick was his life; getting better at it; obsessing about it, doing it all the time. The Same was said about Motorcycle racing; it was his life and he used these aspects to get through depressive times and have goals to aim for which is common across both of us. 100% he has legalist traits (to be fair we all do) and he does have a low self esteem as he struggles with confidence which is common across all the children in our family and something my Dad struggled with when he was child.

    In relation to the pain, it started about 3 years ago from a golf swing. We have both played golf for well over 15 years of our lives with no problems whatsoever (not super fit but we played many sports) but on this one-day Nick felt something happen and a pain and soreness in one place of his back started (lower lumbar L5 sacral area left side). It is important to mention Nick did have numbness in his legs when sitting at the start at work and the initial soreness never left and is still there is one patch of approx. 50 pence piece (sorry British money I know).

    Golf was everything as I suggested but over a period of 3 months the pain would get worse to the point he decided he could not play golf now which was a huge blow to his moral. Moving forward over the next few months he took 2 weeks off sick from work and this is where he experienced his first muscle spasm. Following this one spasm his back started spasms everywhere and slowly but surely it spread across all his muscles at the time on his back and pelvic floor and made him feel more stiffness and tightness and pain in lots of places. His life got much worse; he stopped working completely; he couldn’t sit (and still cannot) in chair at all and it got to the point where he was living on a mattress in his front room with pillows under his back bored, scared and seeking an answer.

    Through this period of the first year, his life become obsessed around the pain problem. I distinctly remember we went from having general chats about Moto gp and all our passions to him not wanting to talk about anything else apart from his condition. During this period as well, his depression got far worse; he started getting very anxious and sweating a lot which are now also problems for him.

    All through this period he has bounced from doctor to doctor; having all physical exams which have always proved inconclusive (apart from a tilted pelvis from Chiros’) and he has had countless MRI’s; nerve blocks and ever test you can imagine linked to bulging discs etc + has seen Rheumatologists for other inflammation problems/Fibromyalgia etc. the majority if not all UK doctors have concluded he is a very healthy individual with a good back shape and no reason they can see of having the pain. It is worth mentioning some of those doctors have suggested over the period that this could be a psychosomatic problem rather than a physical one which Nick has never bought into and gets very angry when suggested.

    Following the first terrible 18 months, Nick’s long-time partner left him; she seemingly could not cope with how different nick was and it was clear she felt it was also not a physical problem which was shared by his best friend somewhat as well.

    This happened at the point where physically Nick was at his worse point; bed bound he would get spasms holding a cup of tea and of course he was not moving for the fear of it getting worse.

    Following his partner leaving I convinced him that he had no choice now but to face his fear and to start exercising and moving again. He finally agreed with me and he started a mild stabilization program on his lower back which in a month had incredible results. He went from bed bound to having 70% normality back; he couldn’t work still but he could at least live with less pain; could even come out with me in the buggy and watch me play golf and physically he was far better which was shocking from just one month of stabilising exercises.

    Emotionally with the breakup of his relationship he was hurting understandably but he was far better and we both put this down to the exercises only which I am sure has a positive effect from being bed bound but in some respects were very surprising on how quickly he got better from his worse point. Just to add over the period I had pleaded with Nick to exercise more and use his back which would always have terrible consequences which he was adamant made him worse but then when he had no choice; committed to the exercises due to his partner leaving all sudden they started having a positive effect.

    2 years on Nick got to a level where he could just about play golf but with pain for days after. He has plateaued somewhat though and was adamant he could not train through it after trying. All throughout the last 18 months it was also suggested to him by one doctor he could have SI joint dysfunction. There were a number of aspects which his symptoms do reflect (like most lower back problem) but he was desperate to recover to 100% and he become convinced it was this which I have to say it carried weight on. Most recently his has gone through with SI Joint fixation to eliminate the muscle imbalance which is associated with the condition and straight away the pain did not change at all which he was disappointed with as soon as he left the hospital (nothing changed)

    What is even more strange as he has got far worse in the last 12 weeks following the op which was done in the US as its not available in the UK. His symptoms following the op have not only confused all of the surgeon team and physio in the US but it does not resemble any side effect ever recorded from Clinical trials. Furthermore, Nick has always had adverse effects to treatment; the first nerve block he had in his SI joint resulted in weeks of torment and pain which was very unusual followed by a second which had no bad affects at all. It is worth noting I went with him for the second injection and from a mentality perspective he was in a better place than the first one and was less hopeful it would work which I suppose looking back would result in less fear as his core fear is not getting better or it is getting worse.

    Furthermore, chiro’s make him feel worse, then sometimes better and he never seems to follow any type of problem conclusively. Furthermore, in the early stages of his back problem, he would get massages for the pain and one of the days he got a very bad pain in his upper back following the massage which now results in burning over his upper back, neck head and face which he believes was nerve damage from pressing too hard (I still find this hard to believe).

    Lastly on the Op and I think relevant here, he felt that the SI Fixation was his last hope to get back to normal; his life in some respects depended on this as unless he is 100% its not good enough. Also the other big fear was it all getting worse after the op which was one of the key reasons he was scared doing it. As you can imagine to then have his worse fears come true; to now believe the op has changed his structure for the worse, he is now obsessing about getting them taken out and is adamant it’s the op even though apart from the timing there is no evidence. Furthermore, to continue to have such unusual effects to all treatments and the fact the op not going how he wanted was such a bitter blow has left me unsure now if it was ever physical.

    In addition, and once again my apologies for the length but previously when Nick was around 14 he used to get severe migraines and was scanned and checked out a great deal with no problem found and where the migraines went after time. Furthermore, he had a holiday to Egypt when around 28 and had a terrible gastroenterology episode which was super traumatic for him. He was bed bound for the whole week and was provided pills from the doctor out there which made his stomach worse and openly admitted he thought he was seriously ill like dying out there with no help in a foreign country which I can only imagine was quite alarming to say the least.

    Following his return from the holiday, he slowly started getting bowel cramps and stall problems (diarrhoea/constipation/pain) which has never left him and once again this severely changed his life. As mentioned his initial passion was motorcycling racing which he once again had every test under the Sun for which was inconclusive across all tests (one professor suggested he had IBS). His life changed in respect of getting worse as he felt he couldn’t race motorbikes now as it was too restrictive, and he felt to poorly in his stomach; this was a bitter blow for him. He also felt he got intolerant to gluten and lots of different foods, so his diet was very bland, he could not eat or go out with his Girlfriend and it affected his relationships across work and in general (still worked through it) his life got worse. This is also where he started getting panic attacks and anxiety problems and his life was never the same really.

    He has flare ups now which give him problems but before his back injury I have to say it was far more severe than it is now and Nick puts this down to dealing with the problem better. I am not so sure on this as when the back pain goes down slightly his stomach in general gets a little worse as in the way there is always something to have despair over. Just lastly and I really appreciate your attention still, he has a huge anxiety problem now which causes several problems for him. Strangely as his back pain got better and we played more golf his anxiety got far worse and this was the main obsession he had which was all life consuming.

    Now after the operation his pain has gone up I suppose is it natural that his anxiety has gone down????

    Nick’s whole life is his problem(s); he has no other enjoyment really; he lives in fear on what will happen if he over exerts himself and his natural fall back is lay there do nothing and it will recover with mild exercises. I can’t help but feel there are a number of aspects here which physically are not explainable and after learning about TMS only recently and looking into Somatic Disorders mainly due to his reaction to the operation/ the fact his one core fear from the op has become reality with no physical reason why and the fact he doesn’t really seem to fall in line with any physical condition I am now very open to the possibility it could be TMS.

    Also and extremely relevant, he has also had a number of Phycology assessments and there has been around 50% of all doctors have suggested his problems are Psychosomatic with his last Phycologist suggesting it was from childhood trauma and he was subconsciously ruining his life due to fear of his relationships being failures and feeling worthless. At all times though, Nick has been adamant its physical; gets very angry when anything else is suggested and 100% believes its in his head is a load of rubbish to the point it feels at times like it’s a crusade to convince everyone.

    My point then of this essay is to one ask you all; does this firstly make sense, and do you think he fits TMS/Somatic disorders?

    Any ideas or information I can share that would help me lead him to at least entertain this option if it seems like it could be?

    Are there any other Physical reasons this could be the case which need looking into?


    I really appreciate any help anyone can give on this and please contact me should you require further information.


    Thank you


    Antony
     
    Tennis Tom likes this.
  2. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Hi Antony -

    I commend you for thinking about alternatives to help your brother. I have to be honest, though - I don't have the time to read any of the details of what you wrote - I skipped to the end. Based on your brother's psychological assessment, obviously TMS is at play here. What you need to understand is that TMS is a normal human brain mechanism, but in those of us with anxiety, it goes into overdrive, and can end up crippling us and taking over our lives. That's what's happening to your brother, whether or not there are also "actual" physical issues going on. Clearly he needs to get control over his anxiety, and it sounds like you're fighting an uphill battle. Admitting that anxiety is a serious problem is an essential first step.

    We are not able to answer this question. Those of us who are here have already accepted that our debilitating issues with physical symptoms are primarily the result of anxiety, fear, and repressed emotions, even if, in many cases, there seemed initially to have been physical reasons for those symptoms to arise in the first place.

    All you can do is give your brother one of the many great books on the mind-body connection and ask him to read it, or to watch one of the many great videos on the subject. He has to be willing to do one of those small things. I wouldn't recommend that he go to the expense of seeing a TMS medical professional unless he's open to the possibility.

    You're a good brother - Good luck to you both!

    ~Jan

    Good luck!

    ~Jan
     

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