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My story and doubts

Discussion in 'Support Subforum' started by dacello, Jun 20, 2016.

  1. dacello

    dacello New Member

    Hello everyone

    I'm new here and wanted to see people's input to help me sort things out.

    First my story- I'm a musician. Have not performed for almost a year.

    First diagnosed in August with golfers elbow and cubital tunnel (left hand) then in o October my right hands completely gave out. Diagnosed with bicep tendinitis. Got into a sling and waited for 5 weeks with only getting worse. Meanwhile seeing physical therapists, chiropractors, acupuncturists etc. This was a time of living hell. I had no use of either arm and was in pain 10 all the time. My wife was feeding me, dressing me, helping me with everything - this 4 months after me running 5 miles every day...
    Finally in January one of my physical therapists suspected Thoracic Outlet Syndrome- I made the appointments with finest specialists who diagnosed me in March and April.

    Now, since January I regained somewhat the user of my arms, and since April started doing stretching regaining my range of motion. Then I switched physical therapists who became far more aggressive with me which I feel pushes me in the right direction, and more secure of my body. However he also keeps asking about stress.

    Now, at the end of June, I can say that I have full range of motion in my shoulders and maybe still a weakened back, but I have been given exercises to fix that. I still have pain in both arms. It's a strange plasticky burning pain in my entire left arm and my right shoulder. Eating really exacerbates my right arm as well as simply seating. Also one of the weirdest things that happens is that my hands become purple and motted when they are hanging down and feeling very weird. Sometimes I have my feet buzzing also. Doctors suggested that I have overactive sympathetic nervous system. I also have swelling on both sides of my neck that no doctor can really explain. So basically I'm facing massive surgery with first rib resection which doesn't have a very good success rate.

    About two weeks ago I run into Dr. Sarno's books and his description of my personality really hit a chord with me. I decided to take the plunge and started being much more active as well as stopping physical therapy.
    Now, I certainly can do many more things than I thought I could, but still have pain that can get really bad. I have these lingering doubts weather I have a structural issue on top of psychological...

    First of all, musicians seem to be getting Thoracic Outlet diagnosis often. Also, I used to get pain in my chest back in the day when I played a lot. Never enough to stop me from playing, but there. Also would get worse with running - I always thought it would just go away, but it would always bug me when running. Dull ache in my chest. In Thoracic Outlet patients it is claimed that this is a result of tight scalenes.

    In our lives playing a lot equates with great stressful times. It's like the chicken and the egg - what leads to what? Same happens to athletes. And while I totally buy RSI diagnosis to be mostly TMS, I wonder if intense overuse, like bow arm on a cello or baseball batting, or tennis swinging could result in tightening of muscles that pinch the nerves... Because stressful breathing also tightens the scalenes.

    Finally, the fact that I spent 5 weeks in a sling in pain, contouring my hands and immobilized in most unpredicted ways and that my hands still fall asleep when I sleep make me wonder if some pinching is going on, result of my many years of playing and then exacerbated by my injury.... It took me 4 weeks to stay stretching my neck fully... And am I feeling better because of all the exercises I did? Therefore is it safe to stop them?

    Does anyone have any insight into such matters?
    Thank you so much!
    Last edited: Jun 21, 2016
  2. Colly

    Colly Beloved Grand Eagle

    Hi Dacello.

    I had to wear a sling for 6-8 weeks when I broke the neck of my humerus in a nasty bike accident. My close friend is thankfully an ICU nurse and recommended I get into physio into my second week after the break. I was terrified but the physio was really more about releasing the arm from the sling and letting it hang and swing. Had I not got back into rehab with my arm it would have been very painful recovery. Your arm having been immobilised needs to wake up again. Just be patient with this, but in this case physio would be beneficial.

    Regarding being a musician, I have been involved with orchestras and close friends are violin players. They often complain of the toxic nature of playing in their orchestra - how competitive it is and how they feel constantly judged. I'm not sure of your playing experience, but it might be worth exploring what things were like for you around the time of the onset of your symptoms. You say that "in our lives playing a lot equates with great stressful times". This "stressful times" is the key here. Stress (self-imposed or otherwise) is wearing out your nervous system. You suggest that "intense overuse" might be causing your symptoms, but you've trained your body over years of developing your craft as a musician, so your body is strengthened not weakened by this. Think of all the famous classical musicians who spend their entire lives perfecting their craft.

    I've had the burning arm pain - as many of us on this forum have. I've also had the discolouration in hands and feet. This was TMS, and I have since recovered, but it was very scary at the time (before my Dr Sarno discovery). Your nervous system has been in overdrive and needs to come off the boil. The shock to your sense of self from the initial onset of symptoms coupled with the shame and guilt of being cared for would all have enraged you and kept your nervous system in a state of panic and fear - all perfect conditions for keeping TMS symptoms alive and kicking.

    There are many pointers to TMS in your account. Devour Dr Sarno's message and embrace his theory. Put off surgery for now, and work on quietening the mind.

    Your discovery of Dr Sarno is the best gift ever. I think thank my lucky starts every day for my discovery.
    plum likes this.
  3. plum

    plum Beloved Grand Eagle

    Welcome to the forum dacello,

    My partner is a musician and through him and his friends I have been gifted with an interesting prism through which to view this.

    I agree that initially your situation presents a conundrum. Can we overdue practice and performance? Yes. Does prolonged rest restore and replenish? Usually. Yes. Can we afford such time away? Often not. Are certain performances more taxing than others by dint of audience pressures or expectations (ours and theirs)? Yes. Finally does the joy of playing take us out of ourselves and into sublimity? It really can.

    I think we can agree that there is a huge emotional and psychological component to being a musician, and that this is sometimes a delicate balance. Being at 'concert pitch' endlessly creates its own tension on top of all the other pressures. And indeed musicians are a finely tuned, often highly strung bunch not always in emotional harmony with each other. Enough with musical metaphors. I'm sure you get my drift.

    Many years ago my partner and I attended a seminar for wounded musicians. Most were violin players with requisite neck and shoulder problems, followed closely my pianists with hand and wrist pain. The man leading the group was Dr. Mosaraf Ali who is a pioneer in Integrative Medicine (He is a Medical and Ayurvedic doctor).

    Dr. Ali criticises conventional science for studying the human body in vitro (experimentally) instead of in vivo (in life). We are so much more than the collection of tests, x-rays and diagnosis. We are a collection of stories, memories and dreams. This is pretty much where Sarno is at. He's asking us to look at our selves and at our lives and see where and how we are insecure and intense. And then to recognise how this causes anger and tension. And to let it go. TMS is created by our mind and is remedied by the mind.

    The mind and body are profoundly and intimately connected by the nervous system and this is a great place to intervene and calm your symptoms. An overactive nervous system is one stuck in a sympathetic state which means it is ready to fight or flee at the drop of a hat. The stresses of performance and all that brings could be enough to do this is especially if the tension is not buffered or countered over time.

    The way to change this is by bringing the parasympathetic into play. This branch of the nervous system soothes and restores. It is healing. There is lots of advice on here to help with that.

    Every soul who comes here juggles with the have I/have I not got tms. It is part of the learning curve and usually is the period where we first venture into our histories to seek the genesis. All the veterans on this site can point to an emotional scar and tell you its story. They will tell you how they stood on the tms threshold and proclaimed "here there be dragons". Beasts of burden writ large in the body and successfully conquered.

    The people here are kind and generous, and know well the doubts you face. The man who started this wiki healed himself from thoracic outlet and rsi. His name is Forest and his success story and postings may help you.

    Warm Wishes

  4. dacello

    dacello New Member

    Thank you both for kind replies. The more I think about it the more I am convinced that TMS is behind my unraveling. I have been leading an extremely busy and stressful life with performances non stop, also highly critical of myself and highly demanding. This goes all the way back to childhood with many hours of practicing, through a career with many ups but crazy amount of downs also.

    I didn't mention in the previous post that on top of everything a family member has been diagnosed with terminal illness in December and that really compounded everything.

    Funnily enough I met with my physical therapist today (after 10 days of Sarno) and he told me that he had never seen me so relaxed and my muscles in such great shape of relaxation. I mentioned to him that I have been doing some mental work after reading a book (of course I didn't tell him that Dr. Sarno suggests no physical therapy) and he told me to keep doing what I'm doing and that maybe I should read the book more and come to therapy less. Kind of remarkable of him actually, so we agreed that I won't see him for a while :))

    Meanwhile I will keep exploring and will come here for advice. Thank you!
    Last edited: Jun 21, 2016
    MindBodyPT and plum like this.
  5. plum

    plum Beloved Grand Eagle

    You are more than welcome.

    That is such great feedback from the physical therapist, not to mention great confirmation you are on the right track.

    I am so sorry to hear a loved one has received such a diagnosis. I pray you find the strength and grace to love them through it. Such a thing can be a tipping point. Indeed my tms really kicked in when my partner was diagnosed with Parkinsons.

    My best to you.
  6. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi dacello,
    I had three surgeons ready to do nerve release surgery for "tarsal tunnel" in the ankle/foot because of severe chronic pain. As plum says, each person must inquire into their doubts about the TMS diagnosis, until, with more and more evidence, one is convinced. Evidence can be your personality, stress, improvements or change in symptoms ----anything which pushes against the physical diagnosis and supports Dr. Sarno's theories, in your direct experience. Good luck in this process, and I suggest patience.
    Andy B
    Also there is on the Wiki the TMS Recovery Program and the SEP, which many have found to be very helpful programs. They are free.
  7. dacello

    dacello New Member

    Hello everyone,

    It has been many months since I posted on this page. However, the replies above have been probably the most important and helpful messages I have received from anyone in my life. As you know, if you read my posts from last June, I was in the most dire and desperate of situations, and weeks away from a massive bi-lateral surgery. I intentionally decided to not come back here - so that I don't get obsessed with support and how I am doing etc.

    However, Dr. Sarno's advice and your postings really hit a chord with me (as I mentioned almost a year ago). So, I took the plunge, stopped all physical modalities, and tried to resume all normal activity. I started playing my instrument (the cello) back in July again, couldn't play for more than 5 minutes at the time. Heck, I couldn't even sit to type at the computer for more than 30 seconds without overwhelming pain. Well, I am happy to report that by December I managed to sustain a national tour. In February I performed a recital of complete Bach works for cello - 3 hours and 20 minutes of music by myself with two 20 minute breaks. And just yesterday I returned from another 3-week performance tour, which included 14 concerts in the US and Canada, countless rehearsals and many hours on airplanes, carrying my cello, suitcases, and briefcases :)

    I still have random symptoms but I do not care. Since I have my whole life back and I worry much less about the future. I consider myself fully recovered - I do not do any therapy and I run, walk, play the cello, type on the computer and enjoy life as much as I could. Also, I am a better cellist than ever before - I worry much less about making mistakes and that makes me play much better ;)
    I couldn't ever imagine that this would happen after all the darkness through which I, and my wife have been. And even now I am writing this message with certain trepidation, with that nagging "don't jinx it". But it's my stupid personality :) So, here you go! You can add me to the success stories! Love and hope to all!
    Last edited: May 11, 2017
    Ellen, MindBodyPT and jaumeb like this.
  8. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi dacello,

    I thank you for your update. I congratulate you on your strength of practice, and I am happy you're not afraid any more. Have you posted on the Success section?

    Andy B

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