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I'm only 23, on the fence, but open-minded. Knee pain has dominated my life for years. My story...

Discussion in 'Support Subforum' started by ryanc, Mar 18, 2018.

  1. ryanc

    ryanc Newcomer

    4 years ago I was just beginning to define myself as a runner but it wasn’t long after that I woke up one morning after a particularly high mileage week with an incredibly swollen knee, in a lot of pain, and unable to walk comfortably. A real injury caused by overuse no doubt -- but what it has turned into is far more troubling.

    For some background, I grew up with no formal sports background. I hated all the sports my parents had me try as a kid. I distinctly remember running around a small gravel loop while on a family vacation and running out of breath to the point that I thought I was having what I imagine an asthma attack feels like. I rode my bike around quite a bit in middle and high school with friends, but that was really it. Despite that, I always had a lot of energy, and I could motivate myself to push through a lot of physical fatigue when I was outside, specifically hiking trails and spending time in the national parks on family trips. Throughout high school I became very interested in the concept of endurance-based sports and long, physical pursuits in the outdoors. These are still ideas that I am very much in love with to do this day. Unfortunately they are not currently a reality.

    My life really hasn’t been the same since I injured my knee running. Despite all of the typical ups and downs and the general ebb and flow of life, nothing has gotten me down more than this injury. For the first time in my life I was beginning to find myself interested in and loving a physical activity, and the rug was pulled out from under me before I could even get my feet wet. It’s not just running though that I no longer do. For the past 4 years, pain has dominated my life almost every waking moment. It’s prevented me from doing just about any physical activity you can think of, or at least, has made me fearful of them. Hike with friends? I’m afraid. Throwing a frisbee? I’m afraid. Bike ride? I’ve managed here and there, but I still am afraid. But even just sitting around on the computer, or laying in bed, or standing around somewhere, or walking can cause pain and often perpetuates it and makes it worse. On the flipside, sometimes these things DO make me feel better. Often activity is actually my saving grace and makes me feel better on some level. By all accounts, to an outside observer, I’m still a very fit, active, and healthy individual. But to me, my knee is always in some varying state of discomfort.

    To frame things a little further, after my initial knee injury, this is approximately the series of events that followed… saw general practitioner, began a heavy dose of NSAID while following basic RICE protocol, began some basic physical therapy, this led to some more intense physical therapy with a sports/running specialist… it was essentially deemed that I had been running too much, too fast, and with improper form…overuse…happens to a lot of people, so why has this turned into the insurmountable issue that it is for me? Working with my PT, we corrected my running form, and I began running again on the treadmill, slowly working in short runs outside on my own, and continuing strength work, etc. However, the pain, or at least my perception of the pain, continued.

    I met with a well-respected orthopedic surgeon in my town and he couldn’t figure anything concrete out. I had an MRI which did not really show anything. He suggested what I think most orthos do and that was to have a cortisone shot. I said sure, why not. This didn’t do much, arguably nothing, hard to remember. However, at this point, from what I can recall, I was still nowhere near the pain I experience often today, and I was doing activities that I can’t see myself accomplishing these days either. That said, the cortisone didn’t seem to do anything, and his next suggestion was an arthoscopic procedure. Prior to deciding to have the surgery, I was still accomplishing pretty solid physical feats, granted with some discomfort. It’s hard to remember where my pain-levels were at this point, but I’m pretty certain it was far more tolerable than it is today. I spent most of that summer traveling doing some projects for school and going on trips with my family. Lots of field work, hiking in the mountains, etc.

    Anyway, my surgeon believed that I had a swollen medial plica, something that doesn't really show on an MRI…basically a fold of tissue on the inside of the knee. Feeling hopeless and out of options, topped off with being young and naïve, I went for it. I wish someone would’ve told me not to (my #1 regret in life is having this procedure). From initial running injury to going through with the surgery, about a year and a half had passed. My surgeon said the procedure went well, claimed I should be back up in no time, and I went back to seeing my physical therapist to rehab from the procedure. I saw him multiple times a week for about half a year after, and continued going around once a week for quite a while after that. He couldn’t figure my knee out. We did so many different things. I was gaining some strength back, slowly, as a lot of my supportive muscles had atrophied in the year I was injured. My quad was practically nonexistent. But the pain continued - and it was worse than it was before the procedure.

    After about a year of frequent PT, I moved away from home and didn’t continue seeing a PT, but at this point, I don’t think there were really any new exercises I could be taught and I was doing everything I could on my own. I tried to get back into activity, or at least the level of activity I want to engage in (running, biking, endurance-sports, etc.) I would manage some short runs here and there, but often would find myself back to square one and sidelined for a while after my knee “blew up.” Really, my knee "blow ups" often for no rhyme or reason. I'll get away with a pretty heavy workout and be fine, and then something pretty easy going will cause it to erupt.

    To give an idea of everything I’ve tried since the surgery to get back to where I want to be, let me lay that out too… various physical therapy routines, weight lifting, swimming, bodyweight exercises, x-country skiing, yoga, cycling, walking, change in diet…went fully whole-food plant-based (vegan) and began incorporating a lot of foods, vitamins, supplements that are supposedly good for joint health and reducing inflammation…I went to a chiropractor for a while, I had some needlework done, custom orthotics, I ice almost every night, I foam roll religiously, I stretch a lot. I’ve tried taking longer-periods of rest, I’ve tried really going back into the activities I want to pursue and pushing myself hard (always leads to things getting worse), and I’ve tried exploring middle ground. Whenever I feel like I’m making mental or physical progress, I always seem to take many steps back.

    This past summer (2 years post-op) I decided to finally get a second opinion after a particular bad blow up had me really down in the dumps. I saw an ortho who works on a lot of the athletes at the local university (division i). Met him several times – had a physical exam, had my pre-surgery MRI, etc., sent to him – he couldn’t come up with anything. I had a fresh MRI, my first since the operation, and he apparently couldn’t find anything wrong with that either. He basically just told me to just not try running for a few months. Great – so I’m told I can’t do that one thing I want to do, but on top of that, it’s not just running that causes the pain. The pain, or at least the discomfort, is there just about regardless of what I'm doing. The only time it seems to not be present, is when I am able to find myself 100% engrossed in whatever it is that I'm doing -- which is almost impossible for me to do because I can't seem to break away from the sensations present in my knee/leg.

    Truth be told, I’m almost always in some form of pain or discomfort. I just feel like this knee pain dominates my life. I’m obsessed with health and wellness and trying to “figure it out.” It’s hard for me to accept that there isn’t a structural basis for this though. My knee joint almost always feels very unstable. Things just feel weird when I’m moving it in and out of different ranges of motion. Even just walking can feel strange and does so frequently. When my knee is going through a period of pretty “severe” pain the pain just doesn’t cease no matter what I do. But the doctor and MRI can’t find anything wrong? But I’ve had exceptions to my pain over the last few years. I’ve been able to go for some several mile runs (granted I’d ideally like to be running much, much more than this) without things being any worse afterwards. I got into a weight lifting routine for a little bit and was squatting a decent amount of weight, feeling myself getting stronger. I’ve gone for longer walks and hikes without the knee feeling worse afterwards. I could go on and on about physical exceptions. But at the same time, things that don’t (in my mind) sound like a logical reason for causing the knee to get worse, often do cause it to do so. Nonetheless, throughout most of these activities, there is definitely still a certain level of discomfort experienced. I've mostly tried to shift my focus towards physical activity that doesn't inherently require much use of the knee joint (which, shockingly, just about everything does, leaving me with very few options).

    I could go on and on about my story with more details about things I’ve tried and things that have happened, but I hope you get the gist. I've. Tried. Everything.


    So flash forward to finding out about TMS recently earlier this year. I read the Mindbody Syndrome in one sitting, took 20 pages of notes while reading it, and was immediately hooked. I felt like I saw myself on just about every page, even down to an example of a patient who had several knee arthroscopes (for a fold of tissue, much like me, even), and was still in pain until finding Dr. Sarno. I found this forum and read through a lot of it. I spent a month going through Alan Gordon’s recovery program and journaling as I go.

    So, as far as TMS goes, I’ve had a lot of other physical symptoms and weird issues happen to me over the last handful of years in addition to but unrelated to my knee. I’ve had weird bouts of arm/shoulder pain that I’ve linked to lifting/swimming/computer use. Carpal tunnel. TMJ. Eye pain. Foot pain. Hip pain. I’ve had issues with frequent urination all my life. You name it. All of these things I think had what my unconscious mind probably viewed as having a perceived cause, so of course there had to be an effect. But after reading this book, almost all of these things seemed to just melt away. Even my knee was feeling a bit better. I was feeling so confident I decided to get on my bike and I biked 20-30 miles a day for an entire week, totaling about 150 mi that week. Things didn’t necessarily feel “normal” but my pain never reached what I’ve come to define as a breaking point (basically a point where no matter what I’m doing, my knee pain doesn’t seem to cease, and often takes a week or even several weeks for it to return to my current perception of “normal”).

    I was so high on my confidence from this week of riding that I finally went out and sprung on a new road bike – something I’ve been wanting to do for years now but just felt would be a waste of money due to my pain and being afraid of riding. Surprise of the century, but my first ride on the bike (not even a long one) caused my knee to blow up. I gave it a week, it was feeling a bit better, so I tried again, and once again, same thing. So that’s basically where I’m at as I write this stream of consciousness – laying in bed and my knee is hurting. It’s really all I can think about it. It distracts me from every actual important thing in my life and it’s just beyond irritating. There is nearly always some degree of swelling (which Sarno is comfortable stating can be attributed to TMS), muscle pain, nerve pain, numbness, tingling, tendon pain, some degree of weakness...you name it. But these are ultimately symptoms manifested by TMS, right? But how do I break this cycle?

    I’m 23 and I’m afraid of where this is going to lead me. I’m afraid that I’m never going to be able to go on a lot of the physically-demanding adventures/trips I so badly want to do. I’m finishing my graduate degree in geology and I’ll be done this summer and I don’t know what that will mean for job prospects, as I’m afraid of having a job that is physical demanding, as many field-based jobs could be. I am afraid of reinjuring myself more than I so often seem to do. I am afraid that my ever-present focus on my pain will cause me to never find a compatible partner. I am afraid that I will never be able to do activities that make me feel like a physical and invincible human. I am afraid I will never be able to run or bike or even walk without pain. I am afraid that I will never find a meaningful, satisfying career because of my fears.

    But those things aside, I’m just tired of constantly being focused on this and being in a perpetual state of discomfort/pain and fearing that next "flare-up."

    I accept TMS is a real thing. In fact I feel like it is certainly the cause of many issues I’ve had over the past few years. I don’t know if this is actually the case with my knee but I want to believe that it is. Provided this is the issue, a life without TMS would just mean so much to me.

    I could stop manically focusing on all of my “pain” and get to enjoy everything that we are meant to enjoy in life – even the simplest of things that I find myself not getting everything out of that I should, like relationships with others, enjoying meals and simple relaxation, and being comfortable with merely moving from point A to point B on my feet (or even in a car...just sitting in car causes discomfort). More importantly, getting over the fear of pain would allow me to get back into training my body so that I can one day achieve some of the physical and mental feats I have desired for so long. I want to be able to use my body to explore nature, to run for miles, to climb up and down mountains as efficiently as possible – and to do all of these things without feeling pain.

    Right now, I am so focused on the “pain” that I can’t even begin to focus on any of these things, and when I do try and work out or get out and do something, I often find myself afraid of injury or already feeling some injury before I can even get started. I can’t plan ahead adequately because I have no idea how my body is going to feel and react on a given day. I can’t do the simple task of making plans with a friend to go for a bike ride a few days out.

    I just want to live the life of a normal, healthy, and active person – which is how I see myself and want to be able to live. I'm young but I feel crippled compared to many of my peers and people I follow on social media. I want to be able to go about all activities without thinking about pain or being afraid of it. I want to get my life back and to be fit and active. I want to believe that this is truly just deeply rooted in my mind, but I just don’t know how to crack it.

    Unlike a lot of posts I've seen in this forum, I don't really have a resolution to my story. This is where I am at today. But I wanted to share some of my story thus far. The treatment programs on this forum suggested posting in the forums, which I did not really follow while going through them each day -- but I figure better late than never. I'm not really sure where to go from here.
  2. iwire

    iwire Peer Supporter

    Hi Ryanc--
    One thing I noticed in your story is the paragraph for you list the things you are afraid of. Fear has been a big part of my situation--and fear definitely perpetuates the pain. Many people on this forum have recommended listening to Claire Weekes on you tube... her recordings are about anxiety---and although anxiety is not my primary problem-- I have found great benefit from it. Good luck! You are in the right place to find support for the mind body syndrome/TMS journey.
    ryanc likes this.
  3. ryanc

    ryanc Newcomer

    Thanks for the link. I don't think I came across that resource during my browsing. I will definitely read through it and watch the resources.
  4. Andy Bayliss

    Andy Bayliss TMS Coach & Beloved Grand Eagle

    Hi ryanc,

    I think iwire's advice is good. It helps to work on your anxiety, and you're rightfully keyed up about your whole experience. Two more tools which may relate to Claire Weekes work, and certainly will support your work with anxiety is 1) finding a way to relax, and even find pleasure every day, and 2) develop mindfulness so that you can more easily witness your fear and anxiety and not get so swept away. Howard Schubiner's Unlearn Your Pain has some recordings which come in CD or on-line which can help you with mindfulness and relaxing your nervous system, and there a lot on Utube also, from different practitioners.

    What I am saying is that you need to find support until your TMS work goes on longer and/or deeper. Soothing yourself will help you have more patience, and it is part of the "cure."

    It might help also to read my latest posting in Success Stories, to see how far I've been down the medical road, basically hopeless, and doing fine now. Each person finds their way, and I think you will too!

    Andy B
    karinabrown likes this.
  5. zachary1

    zachary1 New Member

    I have been dealing with TMS for many years and don’t have any trouble believing emotional versus structural. However, about a week ago, I injured or felt something in my knee, playing tennis and it swelled up substantially, however, is not the joint. It’s where the IT band attaches Itmade me think of TMS. Still swelling for a week and having doubts/struggling.

    Any comments, thoughts.

  6. Booble

    Booble Well known member

    For things like that I'd give it another couple weeks and let it heal before worrying about it.
  7. Baseball65

    Baseball65 Beloved Grand Eagle

    Thgis original post is several years old. @zachary1, swelling does NOT mean it isn't TMS. I feel bad for the kid (who by my math oughta be about 31 by now) who thinks that he has a real problem. I imagine he's been through the ringer with the doctors.

    The 'stickiest' TMS symptom I ever had was my knee....meaning it was the hardest to work through because it LOOKED physical... but it wasn't. It felt like forever, but it was probably 6 weeks....6 weeks of living alone going through my divorce and finding out I was a slow runner when a big fat guy beat me in a race. Of course I knew none of that then..I am enjoying the hindsight that is always 20/20... back when it was bugging me , my only problem was the knee and if it would just stop hurting and swelling, I would be fine.

    It only hurt when I thought about it...many times it wouldn't hurt for days when I was working and distracted, but if I tried to play baseball or ride my bike or anything fun w/o a distraction...ouch!

    I finally had an emotional dump with a Dr. I was seeing and that was the last day I can remember it bugging me. The swelling never really went away, and that was something else I learned about TMS...we semi-neurotic obsessive types 'find' evidence of it being physical that was always there...we just never noticed until the symptom came. I just have ugly knees from 58 years of crawling around on them....I crawled around all day today at work pain free... but I am not going through a divorce and I am really financially nervous and feeling alone and a bit afraid of the future...If I wasn't, I'd probably have a symptom.
    backhand likes this.
  8. Booble

    Booble Well known member

    SO true!!!
    I have a funny story related to this.
    About 15 years ago, I had to get all my lady parts removed. I was petrified of having surgery. Petrified that they would find cancer (which is why they were going in there), and had been scared for the 7 or 8 years leading up to that point when I put off having surgery by finding doctors that said it probably wasnt' anything dangerous So I have the surgery and after a couple days I get sent home from the hospital with all kinds of warnings of what to watch out for, etc.
    What did I find? Looking at the area where I had the IV in my lower arm, I noticed my bone --- what is that bone called? on the very end of the arm a knuckle-like protrusion where the arm connects to the hand. "WHY THE HELL IS THAT THING PROTRUDING LIKE THAT?!"
    I have very teeny tiny bird like arms so that bone thing reallly sticks out.
    I stared at it for a couple days and then started to panic. I finally called the doctor. My doctor wasn't available so I got someone who was covering for her.
    She probably had to try hard not to laugh. She said, "I'm not sure what that could be. You can come in if you want."
    (Which I didn't.)
    I'm looking at the dang things right now and again they look frightening. It's just nothing I normally look at.
    Point being, like you said, anything can look off if we stare at it long enough!
    Baseball65 and JanAtheCPA like this.

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