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Nice Article in the Guardian by Neurologist....

Discussion in 'General Discussion Subforum' started by tmsandrew, May 17, 2015.

  1. tmsandrew

    tmsandrew Peer Supporter

    Nice article in the guardian about stress-related physical symptoms...long piece written by a neurologist for their book (seems quite Dr Sachs-esque!....)

    A small part posted below:

    When we met in the outpatient department one month later, her arm was in a sling and all four fingers were curled inwards, the index and middle ones completely folded, their nails hidden from view. When I tried to straighten them, there was resistance. It was painful but possible to draw the fingers outwards, so that the palm of the hand was bared. Four red welts were visible where the nails had burrowed into the skin. When I released the fingers, they sprang back into their coiled position.


    “Have you ever seen anything like that? Do you know what it is?” her mother asked.


    “It looks as if Shahina has developed focal dystonia,” I said. “It’s a condition in which people’s muscles go into spasm. It can be triggered by trauma, but we need to look for other causes.”


    When Shahina and I met again, she had been admitted as an inpatient on the ward. Her hand was just as it had been when I saw her last. Blood tests, genetic tests and brain scans designed to look for an underlying neurological disease were all normal. But Shahina’s dominant hand was useless to her now, and she needed her mother to do up her buttons and cut her food.


    A specialist neurologist recommended that she be given a therapeutic trial of botulinum toxin. Botox isn’t just for cosmetic use: it has long been used as a treatment for neurological disorders. In people whose muscles go into painful spasm, for whatever reason, it can paralyse the muscles so they relax. The paralysed muscle may then prove useless, but if it results in an improvement in pain and deformity, it can be worth it anyway.


    I accompanied Shahina to have the procedure. A small needle electrode was placed in the muscles of her forearm. The electrode recorded the excess electrical activity that was produced by the furiously over-contracting muscles leading to her fingers. The computer converted the electrical activity to a noise, so that when the needle was inserted into Shahina’s arm, the room filled with a wild crackling sound. The doctor running the test leaned over and turned down the volume.


    “Is that my arm making that noise?” Shahina asked.


    “Yes.”


    “Is that what it is supposed to sound like?”


    “Not if you are trying to relax. If the muscles going to your fingers were able to relax, there would be silence.”


    The doctor took a small syringe filled with botulinum toxin, attached it to the needle, and slowly injected. Shahina watched the computer screen. We were all listening. The static crackling that had been present since the electrode had been inserted was dying down. Shahina’s gaze moved from the screen to her hand. Her eyes were transfixed as her fingers slowly unfurled.


    Do you really think my daughter could hold her hand like this for weeks? She's in pain. I know my own child


    “It worked!” she cried.


    The doctor who had given the injection looked at me with raised eyebrows.


    That afternoon I went to the ward to see if Shahina’s improvement was sustained. I found her tapping away at the keyboard of her computer.


    “It hurts and my hand feels a bit weak, but look how good it is.” She opened and closed her fist. “I’m cured, can I go home now?”


    What I did next I would regret many times.


    “I need to explain something to you, Shahina.” I sat beside her on the bed as I spoke. “Botulinum toxin poisons the nerve ending and the result is that it relaxes the muscles. But it doesn’t usually work instantaneously. It takes a day or two.”


    Shahina looked at me, puzzled. She had not understood the full implications of what I’d said.


    “But it worked straight away for me. That’s a good sign, right?”


    “Yes, which is all that really matters.”


    “OK, so I can go home.”


    Shahina had offered me an opportunity to retreat and I ignored it.

    A week later, a letter of complaint arrived. It was printed on the headed stationery of the law office where Shahina’s mother worked. It ended by saying that Shahina had met another doctor, who had assured her that there was no possibility that the problem could be psychosomatic.


    More than a year later, I received a letter from another neurologist at a different hospital, who informed me that Shahina’s dystonia had recurred and that she had responded well to a further administration of Botox, but that later the dystonic contraction had moved to her left arm and spread to her trunk. “I am beginning to wonder whether some, if not all, of her problem may be psychological in origin,” it said.


    Even when a diagnosis of psychosomatic illness is delivered carefully, anger is a common response and it can prevent a patient getting the help they need. I have often wondered if the outcome for Shahina could have been different had I managed to communicate my suspicions in a better way.


    http://www.theguardian.com/society/...-im-mad-the-truth-about-psychosomatic-illness
     
  2. Walt Oleksy

    Walt Oleksy Beloved Grand Eagle

    The girl's problem sure sounds to me like TMS. I hope someone steers her in the direction of Dr. Sarno's philosophy and his books.
     
  3. mdh157

    mdh157 Well known member

    amazing story.........and more proof of the mind-body connection!
     
  4. RichieRich

    RichieRich Well known member

    I really enjoyed the article.

    Maybe it's British sensibility, but the comments section was possibly the most depressing thread I've ever scrolled through.
     
  5. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Thank you, tmsandrew!
    Andy B
     
  6. tgirl

    tgirl Well known member

    Wow, very interesting..
     
  7. Tennis Tom

    Tennis Tom Beloved Grand Eagle

    I like this comment by Happyness2 :

    "Ah, the mystery that is the Mind.
    We can never get to the bottom of it because the thing we use to investigate it is the thing we are investigating! It will always elude us...thank god!"
     
  8. Cap'n Spanky

    Cap'n Spanky Well known member

    Richie - I'm curious as to why you the comments were depressing? I'll be honest and say I only read a handful. But I was actually surprised by the number of commenters that were very open to the idea of psychosomatic illness. Maybe I missed the worst ones.

    But you're right, often the comments section for these kinds of articles are very negative and depressing. I guess it's very challenging and enraging to have someone tell you something is psychosomatic, especially if you don't see that as a possibility and you are struggling with the illness and pain. It's so important to point out that the pain and symptoms are very real and not imagined.
     
  9. TG957

    TG957 Beloved Grand Eagle

    As someone with focal dystonia, I can testify that dystonia is 100% psychosomatic. I have symptoms very similar to what was described in the article. My dystonia started with left hand and spread to the right hand. I later started getting symptoms in my feet and ankles, but on a much smaller scale.

    Now meet my hero, neuroscientist Dr. Joaquin Farias, who himself had three instances of dystonia and recovered.

    http://www.fariastechnique.com/ (Dystonia Treatment)

    His method helped hundreds of dystonia sufferers to recover. It is very similar to Dr. Sarno's lectures, but more specific to dystonia and neuroscience-oriented. I also found his approach corresponding closely to the Dr. Weekes view of over-sensitized nervous system as the cause of chronic pain. He is well aware of Dr. Sarno and TMS.

    I personally find dystonia much harder to deal with than pain. I was out of neuropathic pain using Dr. Sarno's method within couple months and rarely have it at a completely debilitating level. I hardly ever need a painkiller, maybe a pill or two of Alive on a bad week. Along with neuropathic pain, went away severe insomnia which tortured me for well over 20 years.

    Dystonia is a much harder nut to crack, but I am hopeful. Dr. Farias recommends meditation, yoga and qi gong as well as regular exercise and focus on all things enjoyable. But most importantly, the main healing effect comes from his explanation of the psychosomatic mechanism of dystonia, which he calls "Brexit" of a pre-frontal lobe of the brain (where incidentally emotions reside). He wrote two books which are very helpful to me in my recovery.
     
    plum likes this.
  10. pspa

    pspa Well known member

    Sometimes I get the impression that most enlightened doctors are in Canada.
     
  11. TG957

    TG957 Beloved Grand Eagle

    The most enlightened doctors are Tibetan medicine practitioners who centuries ago were well aware of the fact that repressed emotions transform into pain and other physiological reactions in the body :=)
     
    plum likes this.
  12. RichieRich

    RichieRich Well known member

    I say that because some of the comments show people clearly accepting the existence of somatoform disorders but some practitioners elsewhere are quick to say it's in your head without further assistance. Also, other commenters seem to still be chasing physical symptoms. It's a cacophony of experiences with little assistance. And while I'm not fully on board with the whole 'accept it's TMS' idea, I accept fully somatoform disorders exist and can be overcome.

    It makes me grateful the TMS board exists because at least here you have a supportive community as well as a concept that allows you to channel the idea of psychogenic ailments, without judgement.

    On another note, it would seem that even a tax payer based healthcare system, at least in the case of the NHS, struggles to address the needs of patients with ailments of a psychogenic nature.
     
    JanAtheCPA likes this.
  13. sam908

    sam908 Peer Supporter

    That's not what my Canadian friends tell me.
     
    Tennis Tom likes this.
  14. RichieRich

    RichieRich Well known member

    Where the 'depressing' part of my comment comes most into play is the idea that people are told, "don't worry, it's not physical, it's mental....goodbye." These individuals are now free to struggle with the dissonance between psychological and physical pain without the comfort of 'ears to hear.'
     
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  15. TG957

    TG957 Beloved Grand Eagle

    Right on the mark! I think the doctors that put people through endless and useless physical treatments are as harmful as those who tell you not to worry. Recognition that excessive worry by itself is a potential danger and needs to be attended with care and compassion is yet to come to the mainstream of our healthcare system. Even more so I agree that we can continue "fixing" the way we pay for our healthcare, but unless we fix the way healthcare is delivered, there will be skyrocketing costs and growing dissatisfaction with the system that offers a lot of treatments but no cure.
     
    JanAtheCPA likes this.
  16. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Similarly, I find my vague imbalance/sort-of-dizziness/brain fog much harder to to banish than pain and other equivalents. All of my other major symptoms disappeared within days to weeks of starting this work five years ago, and they rarely bother me anymore - they are either very mild or I can tell them to go away immediately. Not so with the brain fog. I know it's TMS, and I have no doubt about that, because I can go hours without noticing it if I'm fully-engaged in something - but it hits me momentarily if my brain senses something negative or something to fear, and it comes back with a vengeance during times of high stress. Interestingly, although I rarely get sick, I noticed last spring while I was suffering from a bad head cold that I had NO brain fog at all during those two weeks.

    The good news is that having got my life back five years ago, even this symptom doesn't keep me from doing whatever I want to do, whereas I was in danger of being housebound back in the summer of 2011. Along with banishing a long list of other symptoms, I consider that to be a success. And lately I've been able to go through periods (during low stress times) when I make a real effort to be more mindful: to breathe, calm myself, unclench, bring my thoughts back into the present, and appreciate where I am - and it really helps. It's not easy, given a lifetime (over 60 years) of letting my busy negative brain run the show, but I can tell, that even doing this as little as I do, it makes a very positive difference in how I feel, and the brain fog is definitely less.
     
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  17. TG957

    TG957 Beloved Grand Eagle

    Jan, your approach is very realistic. We may never be 100% symptom-free, but as long as we know how to handle them when they pop up, we are still living normal lives.
     
    Last edited: Dec 18, 2016
    westb, JanAtheCPA and Tennis Tom like this.
  18. dempsey12

    dempsey12 Newcomer

    I also have focal hand dystonia. I was diagnosed a year ago. Coincidently, I attended Farias's workshop within a few months of my diagnosis. I found it very enlightening, though I wonder if it was a good idea to attend the workshop within such a short time of my diagnosis. My dystonia has spread. Not to other areas of my body, but to other tasks. Anyways, I'm just curious as to where things stand with you today. Have you attended Farias's workshop, or have you done any of his recommended exercises? Have you found any progress with your dystonia?
     
  19. TG957

    TG957 Beloved Grand Eagle

    I posted answers to your questions on the other thread, so I am reposting here:

    My 90-95% recovery is a proof of his theory, although I have my lay person's explanation of my specific case that does not completely agree with him. What helped me the most were three things, in this particular order:

    1. Unshakable belief that my dystonia is a result of emotional overload, stress, anxiety and insomnia - took almost a year to convince myself
    2. Meditation classes I took from a Buddhist school and then practiced on my own
    3. Qi gong and yoga, with focus on meditational aspects of it, not as a physical exercise.

    I went to Farias' workshop. Per him, my case was not very typical, because I didn't have weakness or twitching and I also had severe neuropathic pain. I had consistent, impenetrable contraction of the muscles in hands & wrists, later spreading to ankles, elbows and knees. I could not bend my wrists and fingers. I just did my first hand stand couple weeks ago. It is very individual, but I tried many generic TMS approaches recommended here on this site and stayed with ones that worked. I focused on anxiety and fear and tried not to be side tracked by extinction bursts (look it up on this site). I am grateful to members here: plum, Eric Herbie Watson, balto and many others. Just read their posts and take it in. Ask questions and believe that you will get better.

    I am putting my story together but it will be months before it is readable. will ask people on this forum to give me feedback.

    One more: dystonia will spread if you don't deal with underlying factors, which are fear and anxiety. Focus on your emotional issues!

    Good luck and don't despair!
     
    plum likes this.

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