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Need some advice

Discussion in 'General Discussion Subforum' started by Click#7, Oct 12, 2017.

  1. Click#7

    Click#7 Well known member

    Hello people,

    Frustration can't even describe how I am feeling. I have been struggling with what was diagnosed (by a TMS MD) as TMS a couple years ago after I had a surgery to remove a cyst in my spine and open things up due to severe central canal stenosis in my lower back (L4-L5). Well the pain never went away !. The surgery de-stabilized the spine and it was called spondylolithesis and after running to surgeon to surgeon they all said I needed a fusion in that area. So like a dumbbell I had that area fused....guess what no surprise here...the pain didn't subside. I have been working on everything suggested by Dr. Sarno and more...I've read at least 7 books. 3 books by the great doctor ( healing back pain, divided mind and mind body prescription) ; SteveO - the GPD and Back Pain Perm. healing; Fred's book RR from Back and Neck Pain and Unlearn your pain by Dr. Schubiner. I have been journaling and self talking and screaming at the unconscious to STOP IT.....and the results are minimal to say the least. So because I am NOW having top of the foot pain & knee pain and clicking, snapping and clunking coming from my spine and knee I got scared and went and saw an orthopedic PA and she said "well I think you have chondromalacia (knee cap isn't tracking right ) so you need some PT to make those muscles stronger. Maybe some tendonitis of the foot (who knows). She suggested a really good PT and I went and saw him this morning.
    He is a doctor of physical therapy and examined my knee and my back and felt some of this could be coming from the back (post op deconditioned etc) and really showed me some exercises to strengthen the quadriceps and hamstrings. He worked me over and did some hands on manual PT. My husband agreed with the plan of care and said.."well laying around in bed, reading Sarno all day and just walking ain't going to help your situation." In a way I really have to agree....So folks I am at a crossroads. I want to do the exercises to make my leg strong, but at the same time believe that this freaking pain is TMS. Other that pain and weakness I do not have any other neurological symptoms like numbness, tingling, atrophy of muscles in my legs in general. The knee is slightly swollen, painful, warm but not red. Just want an opinion from the TMS experts....as to how to progress. One more thing is that I do see a pain management doctor, but haven't allowed any procedures. She just gives me some pain meds (low end) stuff to help with the pain. I have scaled back on as much as I can without going crazy. Thank you for reading...
  2. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Click, I'm sorry to hear of everything you've been through - fortunately, on this forum, you know you're not alone.

    My personal opinion is that most of us need to exercise a LOT more than we do - and you are probably way behind due to your surgeries. How about working with this new PT on an aggressive program of all-over conditioning? Dr. Sarno tells us to avoid PT which focuses on one area, but at this point, you probably do need extra strengthening in the surgical areas, so I say that if your goal is to improve and re-condition your muscles, then that's what you should do - but not just in those areas - you need serious whole-body retraining and rebuilding.

    As you exercise, visualize your muscles getting stronger. If you feel weakness, push through it and tell your brain that your muscles can do this. If you feel pain, as long as it's not dangerous pain (your PT can help interpret) tell your brain that your muscles can take it and that you will improve. I do this all the time at the gym (but I need a trainer, otherwise I don't push myself). It's amazing how a simple shift in my internal conversation can re-energize me and take me through to the completion of a rigorous set that I start out thinking is going to do me in.

    Obviously I agree with your husband. And I know that you do too, or you wouldn't have quoted him :D
    plum, Lily Rose and Click#7 like this.
  3. Click#7

    Click#7 Well known member

    I came home from some little bit of PT and the pain was huge. According to SteveO and Dr. Sarno...PT is taboo. Everything that the PT was trying to do...Stevo says no to on page 142 of BPPH. I swear it's exactly what he wants to do with me. Fire up the core for the back and work on the knee etc.
  4. Gigalos

    Gigalos Beloved Grand Eagle

    A PT has its purpose. The goal should be to lose the fear surrounding your pain and to get yourself in a better shape overall. The goal should not be to do particular exercises for particular symptoms, unless a symptom clearly is generated by muscle atrophy, a real structural problem or surgical intervention. I feel it is important that you tell your PT how you want to approach your symptoms with his/her help. If he says yes, then you make a dream team, if he says no, simply find another.
    My PT gave me core exercises, which did nothing for my symptoms although it helped me to get in shape after months of doing next to nothing. Whenever I start table tennis after the summer break (3 months), my knee plays up. It is missing the support of a ligament, so the muscles need to take over... and after 3 months of doing little, those muscles need some time to regain strength and endurance. They start to create pain the day after playing, but after a month they are back in shape and I have little or no pain.
    plum, Lily Rose, MindBodyPT and 2 others like this.
  5. Click#7

    Click#7 Well known member

    So you are saying go with the PT just to strengthen the knee not for pain relief.....did you have surgery on your knee ?
  6. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Well, gosh, of course you're going to have pain if you are focused on those guys telling you you're doing something bad! LOL.

    I agree with Gigalos, and in IMHO, the book advice against PT can be taken with a grain of salt. Every person's situation is different. They are really talking about people who go to PT and focus on pain where there is no physiological reason for the pain. But if you've had surgery and did not properly rehabilitate either physically or mentally, you have to start somewhere. In 2008 I had three pins implanted in my left hip after a bike accident, and I did all of the PT that was offered afterwards, but it was pretty minimal and pretty crappy. Six months later I went to a PT with a specialty in gait, and he was the one who told me I wasn't using my glutes when I walked, and that I was favoring the injured side which was not necessary by then, even though I did it because there was pain at the surgery site. But the pain by then was conditioned, and it was also not necessary. I learned to ignore it and not fear it, but I was still more than two years from discovering Dr. Sarno, so I just endured the continuing ache which I attributed to scar tissue from the surgery.

    Shortly after working with that PT, I started seeing an "alternative" MD who ordered me to get serious about regular exercise, including weight training for bone health, which I still do today. At 66, I have bench-pressed 40 pounds, although it just about kills me and I can only do about six repetitions :dead: But the truth is, I'm in much better shape now than I was 20 years ago, and, thanks to Dr. Sarno and this forum, I also don't see debilitation in my future anymore.:joyful:

    These days I have a standing 3-month appointment with a PT who specializes in posture/alignment and "letting go of old patterns". I just go no matter how I feel, so he can check my alignment, do some lovely (and painful, but ultimately satisfying) myofascial releases, and give me exercises that generally work my core and upper back and arm strength (poor upper-body strength is the biggest problem that my gym trainer sees among her older clients, and she has incorporated some of this PT's exercises into her routines). I believe that I get more out of the PT treatments because I am mindful of the effect and benefit of the myofascial work, and I visualize my body staying straight and healthy as I head into my senior years.

    Which reminds me to say that it's very unlikely we would be here discussing any this if we still lived the short and dangerous lives that we did when the primitive TMS mechanism evolved many eons ago. We would be too busy just surviving for TMS symptoms to bother us for long.

    Anyway, I think it's okay to let this PT help you get back into alignment. BUT - this is not a passive activity. You need to be mindful of what your body is experiencing, and visualize how it can improve as you do that work. AND - you can't stop there. Both Dr. Sarno and Steve O are big proponents of regular vigorous exercise. It's time for you to just do it.
  7. Gigalos

    Gigalos Beloved Grand Eagle

    I guess it is gray and not black and white as is preached in certain books. I totally get it that they are black and white, because the last thing a doubtful person suffering from TMS needs is getting pulled of the TMS track by a PT who totally ignores the possibility of emotional factors as a cause for pain and other symptoms, instead he might unintentionally destroy your believe in TMS by creating (temporary, placebo) relief and making false claims (nocebo's; oh, your knee is really worn and you'll need a new one in the near future, or something similar).

    Pain in your knee can have three reasons, often occurring simultaneous: 1) there is really something wrong (often not true), 2) you are missing muscle strength and endurance, so at a certain point the brain decides it needs to protect the body from injuring itself, 3) TMS, when the brain is trying to protect the body for no good reason, starting all kinds of reactions like pain, muscle tightness, swelling etc.

    You need all the muscles to put the right tension on your joint, so it can work like it should in all positions. If one or more muscles temporarily lack strength/endurance, problems might start: you develop pain and tight muscles, your knee might start to lock, grind and pop, and of course fear will arise from all that. This fear can keep pain and other symptoms alive even when enough strength/endurance has been developed by exercising.
    A good PT should be able to recognize benign knee pain and determine if it is caused by lack of muscle strength/endurance or not. Myofascial release is an option, but there is the risk that it becomes a placebo, so be mindful! Instead he should help you to exercise without fear and despite mild pain, so you can really start to make progress.

    My ligament has been missing since 1995 :) Nowadays I would get surgery probably, but back then the success rate was pretty low. Nowadays the techniques are much better, but that's from hear-say. When I twist my knee, it hurts in a way that make you use all the swear words you know and create new ones in the process. So my mind is still a bit anxious about using it intensively and TMS lurks around the cornes. But nowadays I feel I am able to distinguish between useful pain (pain that stops me from hurting myself as I am too exhausted and to allow the body/muscles to reoccuperate and strengthen itself) and TMS-pain that I should ignore. This ability is something you need to develop and that might take you some time. I still sometimes get it wrong, but that is often short lived.

    To answer your question: strengthen you knee, work on your TMS and all your pain should go, if it doesn't than any remaining pain is TMS with high probability.
    plum and Lily Rose like this.
  8. andy64tms

    andy64tms Well known member

    Hi Click#7, I don’t like giving advice, but here’s my viewpoint. I differ from yourself, Gigalos and Jan by not having had surgery.

    Recently I cracked my sacrum during a slip accident at the Gym. I fell down full force on the tip of my tailbone, the pain was excruciating, and it took several minutes to get up. After two days of pain I had X-rays at the local Emergency center. The crack appears in two views and goes completely through the sacrum. I was encouraged to see a specialist surgeon. This appeared to be a good time to get checked out physically for my neck issue, but I was very reluctant, the last time I had any type of discussions was in 1998 when MRI’s first came available, I found them to be inconclusive and very hard to understand.

    My neck is the issue now, and since 2011 has been bothersome at times and more so during my sacrum recovery over the last two months, since I was instructed to do nothing, no Yoga, jogging, or even swimming. Without exercise I have declined into a pain-anxiety cycle, with many sleepless nights and a feeling of frustration.

    The surgeon was referred by my son who has had articulating cervical implants in his neck. Yuk! Since he would surely not be interested in TMS I told him I do Yoga, mindfulness and life style changes to control my lower back issues, he was quite impressed and open. I then had my first MRI since 1998 and getting “checked out physically” has resulted in mental turmoil and doubts, since the MRI shows clear compression and rubbing of my central nerve at C2 - C5 area. The surgeon said there were two bone spurs on the vertebra pressing on the nerve like sand paper. I also learnt that my “Charlie Horse” on my neck is the result of my neck curvature not the muscles. Charlie has got to go! I have always had a bulge on my neck nicknamed “Charlie”. Generally speaking I have always had reasonable TMS control over it.

    The surgeon said surgery was not an option and suggested that with my neck issue I would do well with PT. He probably saw that I am already on board with a “self care approach”, so I welcomed this idea, but wondered about the controversy of combating pain with PT or exercise, ref Dr. Sarno and SteveO. I desperately need to reduce my neck tension; my neck is solid, shoulders hunched.

    I have heard the combating pain issue is a slippery slope, but in reality anything we do can be combative, even “thinking psychologically”, or taking a “pain killer”. So to overcome this I say to myself: “How about doing exercise to reduce Tension, and not to reduce Pain”? In some cases Yoga or PT you actually increase pain, so accept it without concern. This approach might be breaking the rules and is quite sneaky, but has worked for me for twenty years on my lower back. I can get a whole body tension soothing by certain Yoga moves, and strangely I have even turned off a neck headache by doing lower back exercises!

    In some cases one has to indulge in PT for other reasons not just tension. I am concerned about my posture, it’s never been good, but presently my shoulders are hunched and I have atrophy and achy muscles in my neck and shoulder area. I have had one PT session and the therapist agreed my neck was a bundle of knots, but pointed out that the muscles between the shoulder blades were the main cause of tightness. He agreed with my current Yoga moves for tension reduction, and seems to understand the concept of mental tension as well. I feel much better for signing up for PT and will incorporate the new exercises into my routine.

    My recent frustration is anger expressing itself, so I have to be careful and mindful not to become combative. I believe the idea Dr Sarno and SteveO had against PT was that it could be considered combative or aggressive and impairs the belief that the pain is false. This would interfere with the real reason for my TMS pain which is psychological.

    So my reasons and assumptions for doing PT are as follows.

    It’s a form of exercise

    It will not cure my pain

    It is only for a short time and only temporary

    I am following my instincts

    I am getting a second opinion for ruling out the physical from the PT therapist

    I am trying something new

    I am the one in charge of my own recovery. With respect Dr Sarno, SteveO, and therapists are inspirational mentors not rulers.

    I am covered by Medicare and AARP, no money worries there.

    I do enough psychological work (most of my post is extracted from my journaling)

    Be well
    Lily Rose and MindBodyPT like this.
  9. MindBodyPT

    MindBodyPT Beloved Grand Eagle

    I like this discussion! Good points from Andy above. There are so many different reasons for going to PT, and PT is a broad profession with many purposes. Please don’t think Sarno is condemning all PT, the specific situation matters a lot. Like with doctors, there are many different clinicians with varying philosophies of treatment.

    I can assure you all that with TMS pain, PT is either placebo cure or temporary relief only. This is true with use of all modalities (all placebo in my opinion). In situations that are grey area it can’t hurt and the strengthening exercises will at least help you get in shape. I’m not personally big on overly focusing on posture but some people really like getting suggestions for this as it makes them feel better/more confident. As was said above, PT exercises can also help promote relaxation, decreased anxiety and therefore less pain. I’ve taken this approach with a few people open to TMS ideas.

    Also keep in mind a large part of what I do is promote improved function and movement. In my opinion any good PT will be maximizing their clients ability to move joyfully! I love getting people back to walking, moving and doing whatever their goal is. Most of my work centers around this, showing them all the things they CAN do. A good PT won’t scare you into having more pain, they will empower you to do more and achieve your goals.
    plum, Lily Rose and Click#7 like this.
  10. andy64tms

    andy64tms Well known member

    Hi MindbodyPT,

    Yes this is a great thread, I’m gradually moving over from the TMs Help forum.

    I believe we have two separate tensions within us. Physical tension the contraction of muscles from physical labor, if we overdo exercise our muscles get sore and have to recover. Sometimes they rebel and even spasm like a “Charlie Horse”. Mental tension also causes the contraction of muscles; I can get tense just sitting at a computer playing Freecell for example. Both these tensions are operated by the TMS brain, as the brain receives feedback from both Physical and Mental activities. Both tensions can be stand alone or mixed together.

    This reasoning might be obvious to some, sorry about that.
    plum and MindBodyPT like this.
  11. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Hi Andy64tms, we're certainly happy to see more of you over here! I have to laugh just a little bit at your apology - it sounds like that old familiar perfectionism and goodism raising its pesky head, don't you think? :p Seriously, no apologies necessary - you never know when someone new will stumble on your explanation, which suddenly makes sense to them in a way that a similar explanation by someone else might not.

    plum likes this.
  12. andy64tms

    andy64tms Well known member

    Hi Jan,

    Well spotted, yes I am an avid perfectionist. I did more journaling on this topic than any other back in 2011. Since then have done well at understanding it and even enjoy this trait.

    I actually have a very hard time writing and expressing. I use “Word” software to draft and spell check first before I post, It has to be correct does it not? I spent a lifetime creating drawings with cryptic notes that are concise with one meaning only, very boring.

    I’m impressed you can bench press 40 Lbs, right now I am having a hard time lifting a one gallon milk jug out of the fridge. I have pulled out my weights, signed up for six weeks of physio and have affirmed my cracked sacrum is healed. It’s time to immerse myself in the physical “Body” side of TMS. I think Click#7 would benefit from doing the same since this mind stuff can drag you down.
    JanAtheCPA likes this.
  13. andy64tms

    andy64tms Well known member

    It was PT day today, I had a hot date with my wife for we both need PT for different reasons and went together. Today was my second visit and my first specific therapy for my neck stiffness ever, I have had a stiff neck since 1998, twenty years plus.

    I tried to get checked out physically in 2012, having X-rays that showed arthritis on the joints. The GP at that time said the lump on my neck was an “Involuntary” spasm. I remember thinking at that time; “Involuntary” equals “TMS”. I then went to one worthless physical therapy session and moved on, my questions unanswered.

    Today, for the very first time another person actually touched and compressed my stiff neck, commenting it was a hard muscle lump. He told me to turn my head sideways causing considerable pain while stretching. I felt immediately vindicated, my lump was real; I had verified it was only a muscle spasm nothing serious. With repeats of the same exercise I felt immediate relief from pain, but cynically thought of the following words: “Placebo”, “Healing hands” and “Temporary Relief”. I did not care since I suddenly became happy, uplifted and pain free. It was similar to the effect of taking a Tylenol PM.

    The therapy was extreme, I had never dared to stretch this much, it was stretching into and past the pain threshold that I do in yoga. By the end of the session I could turn my head sideways pain free, and my neck was comfortable and loose. We discussed my doing this exercise at home with the use of a towel.

    Wanting to know more about this muscle I consulted my “Google information” center and looked at the gooey images. I think the muscle is called “levator scapulae”. It’s semi-tucked in under another large spiral muscle. Its main purpose is to lift the shoulder blade up, so this would explain my hunched posture. Looking at it I can see the reasoning for the specific exercises that the therapist had me do.

    I have contradicted TMS practice by combating pain with a specific exercise. Perhaps my relief is only temporary since TMS has chosen an existing condition “arthritis” of which there is no cure that I know of. I’ll let the reader decide whether I combated pain or reduced tension.

    I consider this is a spasm that is caused or held in place by TMS. In the course of evolution and human survival, why would the body force a pain upon you for twenty years if it were not for psychological reasons?

    I feel much better and can now rise to the challenge of bench pressing more than 40 Lbs.
    Last edited: Oct 18, 2017
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  14. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Andy, this is such a perfect example and description of how anything related to the mindbody connection simply can not be addressed in black and white terms.

    Before I came across Dr. Sarno, I was (in my desperation) seeing an MD who had turned to cranio-sacral work. Lovely laying-on-of-hands stuff, but as with all such treatments, only gave me temporary relief. However, he did three really good things for me, the first being to impress upon me the necessity of weight-bearing exercise as mentioned above. Another was to get me to throw out my custom orthotics and to believe that there was nothing wrong with my feet the way they are. The third thing was to convince me to stop going to my chiropractor (after more than 15 years!) and to "talk" to my neck. Hm.

    I'd had chronic problems since a skiing accident in 1983 when I whiplashed myself and suffered a small fracture of the C6 or C7, I forget which. Ten years later I was having debilitating muscle spasms in my neck (one time my husband had to back-board me so that I could sit up, it was so bad). A very good chiropractor treated me so that I no longer suffered such severe episodes, but she was frustrated that my A-O (atlas-occipital) joint kept going out, and that she couldn't permanently "fix" me. It would create a big painful lump on one side of my cervical spine (my husband could feel it) along with nasty headaches. For years, it was constant ice packs and multiple ibuprofen until I could receive yet another adjustment. The new MD told me to talk to my neck, soothe it, and just gently stroke it (not massage or push on it) in the direction of my spine. I couldn't believe it the first time I tried it on my own - it worked! That was probably in 2010, and I don't think the joint has gone out more than three, maybe four times since then, and it's very minor by comparison to the bad old days - but the self-talk and soothing always works overnight.

    So... what's my point? I think Andy and I are saying the same thing. TMS symptoms are the result of emotional stress, distress, and/or repression. These can create all kinds of real physical conditions. These conditions are typically not harmful (although some can cause damage if allowed to go on too long without addressing the true cause). All TMS conditions can be self-treated. In some cases, a physical exercise or practice can be employed to help get back on the right path - BUT it's important to understand that these are things we should learn to do on our own.

    Another way of saying this is that we must avoid the mind-set that someone else is responsible for "fixing" us. The best healing is self-healing, because once we know we have the power to self-heal, we can stay healed and stay healthy.
    andy64tms likes this.
  15. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    I hope you can do more than six! :p
    andy64tms likes this.
  16. andy64tms

    andy64tms Well known member

    Bike riding, skiing accidents, you have beaten your self up! Getting beaten up is part of the fun though. I had TMS implications when I broke my foot on a wave jump as I walked on it for two weeks. I was in complete denial that I had broken it.
  17. MigraineSky

    MigraineSky Newcomer

    I agree with Jan, I'm very sorry for you after reading your story :( And yeah, I understand what back pain means, it's my constant problem for several years because of scoliosis.
    But I think too that you need more trainings, in my opinion such regular physical activities can really help you during the time. For example, after starting mine I felt much better and I noticed that if I skip them for at least several times, the pain in my back will come back very soon. However I understand how painful these trainings can be in your state so I recommend you to start with smth easy and not very long. Also as a nice alternative for beginning and further keeping your body in tone a standing desk can be, I was soo glad when they appeared in my office because usually after long sitting I feel such back and neck pain :( And because of their construction you can move really free, change your position and even make simple exercises. I can say from my own experience that after at least of several months with using the one I felt much better in the ending of my working day and my body became fitter which made me glad too.
    Also you can try yoga, in my case it's helpful too but considering your body state I strongly recommend you to start only under a control of a professional trainer.
    Last edited by a moderator: Oct 20, 2017
  18. andy64tms

    andy64tms Well known member

    Hi MigraineSky,

    Thank you for your reply,

    Actually I am actually doing very. I have declared myself fully recovered from my broken Sacrum, having followed the doctor’s orders not to exercise or do Yoga for several months. Not being able to do any exercise and having to be careful dragged me down. My accident happened after three months of windsurfing so I was at a peak of health and happiness.

    The question of “getting checked out physically”, coupled with the fear of a “real ailment” was the main issue here. I rarely have anxiety and agonized over the decision to see a doctor/surgeon no less. I realize now that the lump on my neck is benign. A stiff muscle, “Charlie Horse” is a very good description.

    With the help of the therapist I have identified it as the muscle called:”Levator Scapulae”. The therapist was pleased and attentive when I named it and suggested it was the very cause of my hunched posture. This muscle lifts the Shoulder blade up and down. After twenty years this physical theraphy and new knowledge has given me a real sense of relief, note I have never sought healing hands of anybody, chiropractors, acupuncturist or physical therapist.

    In addition I feel elated and uplifted with hope! He physically helped me stretch the muscle; I imagined it was similar to weight lifting that has the effect of tearing the muscle cells. After my second session yesterday I noticed the muscle was much softer, I have regained full motion of my neck sideways and the crunching stopped.

    In my breakthrough it would be easy to forget TMS, and name this a real physical modality, but I know my issues are linked to my type ‘T personality’. T meaning Tension for I have surely learnt to be tense over matters large and small.

    I have seen those standing chairs and maybe they help exercise, regain posture and strengthen muscles, but my equivalent was to go the printer every twenty minutes. I used to send blank pages sometimes which meant two trips, no one ever knew. I don’t envy you sitting at screen all day, coupled with the stress and demands of other people. Unfortunately I did the same for many years using a 3D software called Pro Engineer. I am so happy to be retired.

    Recently I have added logo of windsurfers. The ‘sea’ represents the sea of chaos that is forever changing direction and intensity just like TMS. May I ask what your logo stands for? Does it show a furry cat or wise old Yoda?
    MigraineSky likes this.

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